Simeon's Trail

The IEP

2012-01-15T17:53:00.000-05:00

We had Eon's first IEP last week. Whew. I was a wreck before hand, having read/heard all kinds of horror stories. I really didn't know what we wanted for him, so that was worrisome, as well.

I am a huge proponent of inclusion for school, but the first year of preschool seems more like an extension of early intervention to me, versus actual school.

Eon scored so well (average) on social skills. He had no problems attending to and participating in group activities. I know he would do very well in a typical preschool setting. What I didn't know was whether or not he would be pushed to excel in that setting. My fear was that they would think he was cute and tend to baby him.

My sister is an OT in the school system. She has seen that first hand. She's watched as a child with Down syndrome was allowed to skate and not required to hang up his backpack or stay in line with the other kids. She's not sure if they just excused him because he's cute or if they just had lower expectations for him.

Eon needs to be pushed. He will do the minimum he can get away with. :) We know Miss Elaine, the developmental preschool teacher won't let that fly. So, when they recommended developmental preschool initially, with the option to move to community preschool when we feel he's ready, we jumped at it. We feel it's a good plan and fits his needs.

I freely admit to tearing up when they started discussing the bus, though. I'm just not sure I'm ready to put my three-year-old on a school bus and watch it drive away. They recommended starting with sending him home on it. That way, he can just get on it with his friends. I got the feeling they've dealt with sappy moms before. We'll see. I can totally see me stalking the bus the first time he rides it.

Some other good things about the meeting were that they seemed to really like him, which every parent enjoys hearing, and, the psychologist seemed to have a good grasp on how limited IQ testing is, especially for kids with decreased communication like Eon. I was prepared to tell him all of that, so it was nice to have him beat me to it.

Overall, it went well. The only surprise was that he starts a full week earlier than I'd anticipated. A week from tomorrow. Just ONE week. When he's still only TWO. Sigh. I don't think I'm ready for this.

Open letter to the Medical Director, Kidney Transplant Team, CHOP

2012-01-13T19:03:00.002-05:00

I read this post and I had a visceral response. I amended a post I wrote a few months ago and responded to what I see as a complete injustice.

Open letter to the Medical Director, Kidney Transplant Team, CHOP:

Dr. Baluarte,

I am certain that you are excellent at what you do. You did not obtain your position without stellar skills. I am wondering, though, if you remember why you became a doctor in the first place. Was it because you wanted to help people? I'm sure that was a lot of it. I'm also sure that you have helped many, many people. And yet, there are some people you deem unworthy of a life saving procedure based on what you and your team perceive to be "low quality of life."

At one time you pledged to have unconditional positive regard for your patients, to not discriminate based on who a person is.

And now you are.

No one can truly appreciate another's life experience. Who should decide whose life is valuable?

The Angelina Jolies of the world - with their excessive wealth, nanny for every child, globe trotting lifestyle, etc - might consider my life to have less value than theirs.

We work hard for every dime we bring in. We have a small, starter home...that we've lived in for 13 years and have squeezed seven children into. We are raising these kids without outside help, nor do we have a housekeeper, a driver, or a chef. We drive vehicles that are over 10 years old. If the fuel pump goes out in the mini-van, we just don't drive it until we can afford to get another. Our vacations consist of camping in nearby parks in our tiny little camper...that leaks.

But our reality is so much MORE! We have love and laughter (daily). We have great friends and actually enjoy the work or our hands. Our children are a blessing (all of them) and we delight in them! While I prefer 5-star resorts, gourmet coffee, and theatre performances, I've learn to LOVE camping, McDonald's ice cream cones, and the $1 movie. :) My life is full and rich, even though, at times, suffering has been a part of it. (Who has never suffered?)

Wouldn't it have been a shame if the Angelina Jolies got to decide my fate based on the first description?

Just because my son with an intellectual disability will never father a child, might not marry, go to college, hold a job, etc., does not mean that he will suffer. Just because his life will not be like mine, doesn't mean he shouldn't have one.

How did we come to this - where we can project our hopes for our own lives onto children to the point that, if they can't meet them, we decide that they must die?!? You look at a list of diagnoses and make a judgment on the quality of that life.

The list never told me that my child with Down syndrome would:
* make me laugh every single day
* eat with gusto everything his momma cooks
* learn to use sign language
* wrestle with his brothers
* be everybody's favorite sibling
* be such a great problem solver
* introduce us to so many wonderful people
* love music, Blue's Clues, and pizza
* have a smile that lights up the room
* be so active (and fast!)
* have so few health issues
* charm everyone he meets

No list of diagnoses and potential problems could EVER accurately describe the life of a person! I hope that you will reconsider your stance on this. I hope that you will view people with intellectual disabilities as just that...people. Amelia Rivera deserves a transplant. You need to give her one.

Sincerely,

Mrs. Tara Lakes

www.simeonstrail.blogspot.com

Hmmmmm

2012-01-08T12:50:00.000-05:00

My subscription to Reader's Digest recently ran out, so there are only 2 magazines that actually come to my house. Both of them are free, otherwise, they wouldn't come either. One is a local homeschooling magazine that I rarely read because it just makes me feel guilty and the other is a magazine that I devour, not because I necessarily agree with all it represents, but because I find it fascinating.

It's called Above Rubies, self published by Nancy Campbell, and its stated purpose is to encourage mothers. There's a whole lot about eating organically healthy and other things that I tend to skip over, but I really enjoy the personal stories from her readers. Many of them have a certain "I've got it all together" tone that I find annoying, but it rarely makes me mad.

Until now.

This issue, there is a section of personal stories about women receiving the "Wrong Diagnosis" while pregnant and how they responded. The first story sent my normally very low blood pressure through the roof. Of course, the "diagnosis" was Down syndrome. They used the term "diagnosis" very liberally as most of the women simply had the early blood screenings which indicated they had a higher risk of Down syndrome, and declined the actual testing that would have given an actual diagnosis.

Of course, because of their prayers and faith, they did not have a baby with Down syndrome.

I wrote a letter to the publisher. I haven't received a response. Shocking.

Dear Nancy,

I am a long time subscriber and avid reader of Above Rubies magazine. I usually devour the magazine from cover to cover as soon as I get the chance. Issue 83 was no different for me. To say I was disappointed is an extreme understatement. From the moment I read your intro in the section titled "Wrong Diagnosis", I had a bad feeling about where it was going. While a bit inaccurate (no physician would encourage termination for Down syndrome without a confirmed diagnosis), you are correct that the medical community does indeed often push for the termination of Down syndrome pregnancies. In fact, the current estimation here in the US shows 92% of confirmed Down syndrome pregnancies are terminated. I have one friend who was told of her positive amnio results and immediately informed, "I will call and schedule your termination for as soon as possible." When she adamantly declined, her obstetrician's office phoned her THREE more times to inform her that she was running out of time to legally abort. It is a travesty.

However, when I read the individual testimonies, my heart sank. It is no wonder to me that the world finds little worth in individuals with Down syndrome, when we in the Body of Christ believe it is something to "fight and pray" against (My Prayer Warriors) and that only babies born without it are "perfect" (My Prayer Warriors) and "healthy"(Infertile!, I'm Glad We Didn't Listen). I found the tone of some of the articles to be bordering on arrogant, indicating that the reason their babies were born without Down syndrome is because of the prayers they offered or the attitudes they maintained during the pregnancy. I think that kind of thinking is not just offensive to me, but also to our Heavenly Father.

Here is my story: I have always refused the routine blood tests which screen for things like trisomies, spina bifida, and cystic fibrosis. I know that these are not definitive tests and the only way to be sure is to have an amniocentesis or CVS. At the level 2 ultrasound for baby #6, the technician thought she saw something of concern with the baby's heart. Because of my age, 38, I was sent to the maternal fetal specialist for another scan. There, the heart looked fine, but the bowel on our baby boy looked bright, a marker for Down syndrome. I was offered and declined an amnio. I rightly assumed that our baby was being fearfully and wonderfully made in the secret place of my womb and went on to enjoy the pregnancy.

At exactly 39 weeks, I gave birth to a 7lb, 10 oz perfect and healthy baby boy, who also has Down syndrome. We are very proud of our son's "designer genes"! We know that he was indeed fearfully and wonderfully made and created in the image of an Almighty God. At 3-years-old, he is very much more like typical kids than different. He enjoys playing cars and wrestling with his older brothers and he is as gentle as a 3yo boy can be with his baby sister. We like having him in our family so much, that we are moving forward to internationally adopt another little boy or girl with Down syndrome.

I wish people in the Church would get educated. I wish that they would seek information to see beyond the common myths associated with Down syndrome. Our son is not an "angel". He is most certainly not "happy all the time". He is not "downs" or "mentally retarded". He's a little boy who happens to have an extra chromosome. Because of that, it takes him a little longer to learn things that come easily to other children. He will learn to read, ride a bike, and, hopefully, drive a car. Young adults with Down syndrome are attending college, working meaningful jobs, and even getting married. We have high hopes for our Simeon. But, even if his intellectual disability causes him to live with us as an adult, we know that we have been given a gift and we are forever grateful.

I hope that we will see more positive stories of people and children with disabilities in your magazine in the future. I hope that you will join us in working to remove the fear associated with parenting a child with special needs. Not all the gifts that God gives look the same, but the joy and the rewards are completely worth the challenge.

Sincerely,

I'll let you know if she responds.

Adoption

2011-12-27T20:03:00.000-05:00

My heart hurts for orphans. From the time I knew about adoption, I knew I wanted to adopt a child. Early in our marriage, Shawn and I discussed adopting a child with Down syndrome some day. When we had Eon, I thought God had just been preparing us for him. Now, we believe Eon is, in fact, preparing us for someone else.

Upon the birth of our first born, I remember thinking, "They could've handed me any baby and I know I would love her just as much." And, later thinking, "That was a bizarre thought to have." :) But I knew then that I was capable of loving one born to another.

So, it's really no surprise that the children of Reece's Rainbow have captured my heart and turned me into an advocate with my first click to the website. I have spent much time praying, crying, and longing over the children listed there. I follow the blogs of parents working to bring their children home. I rejoice when I read the "Gotcha" posts and feel like I'm walking on air after viewing the pictures of the first meeting. I talk about the fate of those not chosen with anyone who will listen...and sometimes even if they won't.

I wrote this post several months ago about our position on adoption.

But, God, in His mercy, intervened and radically changed our circumstances. Suddenly, we qualify. We could actually do what just months ago seemed so much like a pipe dream. We could actually have a "Gotcha Day" of our own.

How in the world do you choose a child? I scroll through the pictures and my heart is captivated by each and every one. God chose the children currently in our home. For the most part, we even left the timing and the number up to Him. So, being in the driver's seat is something new.

Yet, we're not really in the driver's seat, are we? Honestly, if we were, I'd be researching our next vacation spot instead of researching the best agencies. But God has so strongly placed this on our hearts, there really isn't any question as to if we'll take the leap.

The rational (maybe secular?) side of me, insists that we wait until the time is right, the money is there, the house is bigger, the baby's older, the littles are potty trained, the olders are enthusiastically supportive, etc.

My heart, however, tells me there is a child who goes to bed at night without a story, a kiss, or a prayer...a child who wakes at night without crying because he knows there is no one to comfort him...a child who has never felt like he mattered (because, in his country, he doesn't)...a child who's fate is sealed when he reaches the age of five and who will surely die unless I can get my head in the game.

When I listen to my heart, my excuses fly out the window. I know a sense of urgency to bring that child home, before any more harm is done.

But who is he?

A Gift

2011-11-20T20:00:00.000-05:00

(For those looking for an update: Eon's EEG is scheduled for Wednesday morning. We have not witnessed anymore seizure activity. We'll keep you posted.)

Today, I am incredibly grateful to be Simeon's mom. I'm lying on my bed typing on my laptop and Eon is in the tv room right outside mine. He's playing ball with his big brother, Ben. His pants are falling off and his diaper is sagging, giving him a plumber's crack.

Any second, he's going to catch sight of me and run in here signing, "diaper" so I'll change it. While in here, he'll invariable sneak a drink of my coke (and cough...he's still not supposed to have thin liquids) and throw a book at me so I'll read to him.

This morning, he raced into church ahead of me and took off toward the stairs to go to his class. He was indignant when I steered him to the bathroom to wash breakfast off his face, instead. He kept signing, "play, play!" Big sister dropped him off at his class. She later told me that he walked up to the gate and said, "Hiiiiiiii!" and signed, "Play!" to a little boy who was waiting there, then lifted his arms to be carried over the gate and into the classroom. Once inside, he gave a backward wave to big sis and joined in the fun.

I was thinking earlier how empty my life would've been had I chosen differently and terminated my pregnancy for Down syndrome.

Every year, on my due date, there would be tears, sadness, and even guilt. Now, there's cake, candles, presents, and laughter.

If someone with Down syndrome crossed my path, I would inwardly cringe, even as I watched, wondering if they'd confirm my choice by behavior or need. Now, there's an instant delight and immediate connection as we compare notes on our similar trails.

I might feel some measure of relief, along with my pangs of grief, from time to time that my life is not as difficult as I was sure that it would be, but I also would never know what I do now...that courage grows from meeting challenges, that depth comes from embracing hard things, and that love really does conquer all.

He's a miracle, this child of mine. In spite of all odds, he's not only here, he's thriving. He's teaching me what living really means. He's leading me in my quest to discover one thousand gifts, of which he's certainly one.

Without him, my life would have less color. I imagine the winters a little colder and the edges a little harder. The highs of life would be less high and the lows would last longer. There would be less laughter, less passion, less grace...less life.

And I would never know.

What a gift he is to me, this exuberant bundle of designer genes! I am so humbled that God gave me the eyes to see beyond the fear. How I pray that others will see, as well.

The Seizure

2011-11-14T21:56:00.002-05:00

Saturday, after having donuts in honor of our bookends' birthdays (Michaela, our oldest, turned 15, and Keturah, our youngest, turned one), Eon suddenly started crying and grabbing his belly while rolling around in obvious pain. We tried everything to calm him and to discover what the problem was, to no avail.

After a half hour of this, we called the doctor on call and left a message for the nurse. Before she returned our call, he calmed somewhat. Then, while he was laying on our bed, his eyes half-way closed, his eyes started flitting from side to side. I called his name and he didn't respond. When I called him louder, his eyes opened wider and stilled, but didn't focus. Then they half closed and flitted some more. The whole thing probably lasted 30 seconds or so.

When the nurse called and I explained what happened, she sent us to the ER. Eon was completely exhausted by then and didn't even move when Shawn buckled him into the van. Pulling into the ER parking lot, I thought he looked pale and I couldn't get him to wake up. I shook his leg and patted him and called his name loudly. Nothing. Freaked out, I pulled into the nearest parking spot, yanked him from his car seat and took off running.

Halfway to the door he said, "Momma. Down!" After that, he acted totally normal. He was diagnosed with an ear infection. I tried to hold him down for a CT scan. That was fun. They were able to get enough to rule out hydrocephalus and a brain tumor, anyway.

We were instructed to have our pediatrician order an EEG and follow-up with a pediatric neurologist. We have an appointment with our ped tomorrow morning.

Honestly, I'm a little stressed about it all. I was very afraid on the way to the ER.

Also, I'm in a lot of physical pain. I hurt my back dashing into the hospital with a 30 pound bundle of low muscle tone. I just recently recovered from a back injury that happened over 3 months ago. I have some thoughts about this new injury that I haven't sorted out, yet. I'll keep you posted.

For now, please pray for my boy.

Random pics

2011-10-22T15:20:00.002-04:00

Just thought I'd share some recent cuteness. This kid is such a perfect part of our family! The first one is at the pumpkin patch. Eon's not real sure he likes the goats. Maybe because the turkey just pecked at him?

Brotherly love. Or would this be "smotherly love"? He really does love his baby sister. Most of the time, she loves him back.

Can't resist showing off some KJ cuteness. She is really quite adorable. :)

All the siblings after a long afternoon searching for the perfect pumpkin.

Bye! (This is the look we usually get before he takes off like a shot toward the nearest busy street. Thank you to his PT for spending all those hours teaching him how to run. Really.)

Changes

2011-10-17T17:11:00.000-04:00

Recently, Shawn and I made the decision to switch roles on a more permanent basis. Meaning, I am now working full-time and he is staying home and schooling the kids. You can read more about all of that on my other blog. What it means for this one is that adoption may not be out of reach anymore.

I'm scared.

It's one thing to have noble ideals; it's a whole 'nother ball of wax to walk them out, or even to take the first step. When it was just a distant dream, I thought and prayed about it all the time. Now that it could actually happen, I find myself avoiding the conversation with God and with my husband. I'm afraid of what they might say...positively or negatively.

The what ifs are looming large:

What if we commit to a child and then can't raise the money? What if our friends think we're presumptuous to ask for help? What if we're not organized enough to pull off the mountain of paperwork this would require? What if we don't pass our home study? What if our oldest never gets on board and it rips our family apart? What if the child has undisclosed medical issues we can't handle? What if he has autism? What if we never come to love him as our own? What if something happens to one of us and the other is left to do this alone? What if our biological kids resent us for this? What if they feel burdened instead of blessed?

The hows are close behind:

How on earth can we handle another child, when we're so often exasperated by the ones we have? How will we cope with the additional noise when it's overwhelming as is? How can we possibly afford this? How will we have time to fundraise when we can't even find the time to make Buddy Walk t-shirts? How can we take time out to bond with one child, while still meeting the needs of seven?

All of those questions are overshadowed by one more:

How can I not obey when God has so clearly directed?

How, indeed.

Rescue those who are unjustly sentenced to death; don't stand back and let them die. Don't try to avoid responsibility by saying you didn't know about it. For God knows all hearts, and he sees you. He keeps watch over your soul, and he knows you knew! And he will judge all people according to what they have done. Proverbs 24:11-12 (NLT)

The Monster in my Mind

2011-10-02T11:27:00.001-04:00

I have long encouraged women waiting for amnio results to get educated. I know from experience that, unless you are already holding your sweet baby, Down syndrome can become a monster in your mind.

What I didn't realize is that it can become that monster no matter how educated you are.

I've been working full-time for the first time in years. Lately, I've worried about Eon, his future, and his delays more than I ever have.

In trying to figure out why, I realized that I haven't spent much time with him. When I walk in the door, he enthusiastically says, "Hiiiiii!" and then hugs me. He follows me upstairs where his baby sister is waiting to nurse. I sit on the bed to nurse her and he climbs up there, too. After hearing me chide him to be, "Gentle!" or, "Don't sit on her!" too many times, he wanders off to do his own thing. By the time I'm done nursing, I have another hundred things to do and Eon's busy with something else.

Everyone else in the family comes to me when they want attention (repeatedly. :) Eon doesn't come back.

I finally realized that I need to seek him out to spend time with him. The more time I spend with him, the less worried I am about Down syndrome. Eon's just Eon...perfect the way he is. No monsters here.

Out of Left Field.

2011-09-14T18:37:00.000-04:00

Ever have a smooth day when all of the sudden, out of left field, comes something you were completely unprepared for?

We had one of those rare days where we weren't completely swamped with patients and could actually leave the building for a real lunch break, today. Most of us took advantage of that fact.

As it often does, conversation turned to marriage and family, with the single gals fielding questions about marriage and the married gals fielding questions about children. Only 2 of us in the group actually have children. We weren't fielding questions at all. ;)

The conversation took a turn and left me feeling as if I'd been sucker-punched.

One of the single gals declared, "I just want to have a child before I'm 35." She was asked, "Why 35?" and my stomach started to churn a bit.

I knew what was coming.

"No offense, Tara, but I don't want a Down's baby."

Rationally, I understand where she's coming from. She's young and is lacking the experience to see that life is not so easily controlled. She has no children and doesn't yet understand that all children have special needs. She doesn't have the spiritual wisdom to know that children are a gift, not a right, no matter how many chromosomes they sport.

Emotionally, I was a bit undone. I know what she said, but I heard, "I don't want a child like yours. He's not good enough. I will avoid one like him at all costs." My momma bear instincts were rising up and I'm afraid I was rather snarky in my response.

"You do know," I said pointedly, "that 80% of babies with Down syndrome are born to women under the age of 35, right?" She did not. The rest of the conversation is a little fuzzy as I tried to get control of my emotions.

Eon is not a mistake. He isn't a tragic accident. He is not a statistic to be avoided, or worse, a problem to be terminated. He was born in the image of an Almighty God who chose for him to be here. He is a gift. I am blessed to be his mom!

Honestly, it is harder (in some ways) to parent a child with Down syndrome. I'm sure even more complications will arise with age.

But, I wonder...how many difficulties are a true result of the extra 21st chromosome, and how many are simply a result of our culture? If ignorance, discrimination, self-absorption, and a general sense of entitlement were not part of our societal norm, would it be easier to raise a child with special needs? I think it would.

My life would be easier if I didn't feel like I had to defend my child's very right to exist. If I didn't feel like I had to prove to everyone how very worthy he is of acceptance, I could relax and enjoy him. My life would be cake if I didn't have to counteract basic ignorance of Down syndrome that I encounter almost daily (Ex, this week alone: Ds is caused by vaccines, only women over 35 have babies with Ds, "they're all so happy," "most of them can't talk," "you can teach them to read?", etc.).

The only frustration I have currently that is actually related to an extra copy of the 21st chromosome, is that Eon can't yet verbally communicate with us and I am certain that he one day will. (He's only 2 1/2.)

I wish that she could truly see how this child has my heart. How he has enriched my life in ways the "typical" children cannot. How he embraces life and expects us to do the same. How he is so very much like his typical peers and his differences only enhance him; they do not define him.

She really doesn't know what she's missing.

Maybe he's just 2

2011-09-10T15:26:00.000-04:00

Lately, I've been struggling with Down syndrome. At 2 1/2, Eon has rockin' gross motor skills and does pretty well with self-feeding and other fine motor tasks. Speech, however, is a whole 'nother ball of wax.

He used to have words. Up to fifteen, in fact. I don't know where they go, but they're gone. We no longer hear, "gallup, gallup, gallup" when he wants up or "goggie" when he sees the family pet. We don't hear "ook" when he wants to be read to. Those words are just gone and they've not been replaced. He continues to sign and adds to his signing vocabulary almost daily, but he doesn't attempt to speak. He seems lost when asked to imitate sounds or words, too. It breaks my heart. There are so many choices and ideas when it comes to speech. So many things to try and so little time. I don't know where to put our focus because no one has done any research into best speech practices for our kids. What if we waste our time pursuing something that won't help and ignore something that will? I'm looking into prompt therapy, sight reading, augmentative communication, or stopping signing altogether in hopes it will encourage spoken words.

What he does do when he's excited, frustrated, bored, hungry, feeling left out, or any other emotion is yell, "MOOOOOOOOW!" often repeatedly. Shushing him doesn't help. Whispering back doesn't make him stop. Telling him a firm, "NO" doesn't work, either. Honestly, it sounds a lot like a large, distressed cow. And it makes me cringe. He sounds very much like a person with special needs.

My reaction reveals a lot about me. It uncovers a boat load of pride and prejudice which have nothing to do with the classic novel. I'm embarrassed that my son makes noises that draw attention to him and the rest of us. I'm ashamed that I'm embarrassed. I'm frustrated because I don't know how to make him stop. I'm mortified that it reveals a prejudice about me. Why is it so important to me that he sound "normal"? Why do the looks of pity or irritation that we receive bother me so much? How can I expect other people to accept him, when I'm struggling to accept him, myself?

And then it occurs to me. I have had the occasion to parent a 2 year-old five other times. They have all been really good at being two. I have not enjoyed my outings with them. Their behavior was obnoxious and often mortifying. They were unpredictable and made me question my parenting skills. They caused people to stare with their tantrums. I received looks of pity and irritation. I was embarrassed.

Why should my experience with Eon be any different? Have I bought into the myth that people with Down syndrome are all "so happy"? Or did he just spoil me by being such a good baby? Why do I insist on making everything about Down syndrome?

Maybe, Eon's just 2...and he's really, really good at it.

Siblings and Down syndrome

2011-08-07T14:43:00.000-04:00

Tali, 7, spent the evening playing with Eon until he had to go to bed. Then she picked up her baby sister and said, "You don't have Down syndrome, but that's okay. You're still cute!"...as if she was consoling her. She also informed me that I should have another baby because she needs a sister with Down syndrome, too. :-)

These moments bless me. I love it when my kids seek out Eon to play with or just be with. They truly love him, which I knew they would, but they also like him. He is enriching their lives. He is very much included in this family.

The bigger boys (6 & 4) have yet to really see him as different. They ask me occasionally why he can't talk, yet, and know that he has Down syndrome and gets therapy, but it doesn't change how they interact with him. He is always in on the action whether they are building tracks in their room or sliding down the stairs in totes.

Tali obviously knows he has Down syndrome. She finds it delightful! She loves to mother him and teach him new signs. He's her favorite hide and seek partner, too. If it were up to her, we'd have a dozen kids with Ds.

Ellie, 11, has a better understanding of it. She adores Eon and is very protective of him. She gets excited when he masters a skill he's been working on and gets frustrated for him when he struggles. She has developed a love for all people with Down syndrome and is very comfortable around people with any disability. She asks the most questions and is, therefore, the most knowledgeable about it. She stands by her statement made when he was weeks old that she will take care of him when we're gone.

Mick is 14 and at the age where different is not a good thing. Yet, she is very practical and has a strong personality. At a time in her life where she could be ashamed of her brother and want to hide him, I watch her reach down to pick him up while talking with her friends. At the grocery store, when he loudly vocalizes, I see her shush him and then tickle his belly just to hear him laugh. When he kicks up a fuss at nap time, she often asks, "Can he please just stay up? He can watch tv with me." And then I watch as she settles him on her lap and turns on his favorite show.

Keturah, almost 9 mos, will never know a life without Down syndrome as part of it. She just knows Eon as the big brother who used to steal and throw her pacifier, but now just kisses her and brings her toys.

My children amaze me. They have taken the changes to our life in stride. They accept Eon for Eon, mildly curious about the things that make him different, but fully embracing the ways he is the same.

We are blessed.

Tell All Tuesday!

2011-07-26T13:09:00.000-04:00

This little guy needs a home and a family. Could it be yours?

Soon, (if it hasn't happened, yet) he will be transferred to the mental institute. His head will be shaved and he will likely be tied to a crib. When he cries (and he will, at first, until he learns it won't do any good), he will be ignored or abused. He will sit for hours in his own waste with no stimulation and nothing to do.

Given a family, he could thrive! We've seen it happen time and time again. These kids do very well when given a chance.

Please share this. Post it on Facebook, tweet it, blog it, tell people irl, send emails, etc. Please, let's find Harlen a home!

$5 Friday!

2011-07-22T10:01:00.000-04:00

Today is $5 Friday for Harlen. Can you spare just $5 measly dollars for a boy who has no one? Maybe you think, "$5 is just a drop in the bucket. It's really nothing compared to the need." You're right. It's not. But a bucket is simply filled with lots of drops. If enough people just take the time and a little bit of cash, soon the bucket will be full.

So, go ahead. Be a drop in the bucket for Harlen! This little guy will soon be transferred to a mental institution. There, he will likely face abuse and neglect that will kill him.

Rescue those who are unjustly sentenced to death; don't stand back and let them die. Don't try to avoid responsibility by saying you didn't know about it. For God knows all hearts, and he sees you. He keeps watch over your soul, and he knows you knew! And he will judge all people according to what they have done. Proverbs 24:11-12 (NLT)

Sorry, but now you know. There is a little boy in a far off land who is headed for death. He is innocent and there is something you can do to save him. God knows you know.

$5 is not much, but it can be everything for this child!

Please give here, today, right now, before you forget!
(And share this on Facebook, Twitter, your blog, wherever you can think to.)

Dear Harlen,

2011-07-16T16:33:00.000-04:00

You are a little boy with an extra chromosome. Because of it, you have neither a mom or dad, siblings, grandparents, or a church family. You have no toys, clothes, or even shoes that are yours alone. You have blond hair and blue eyes. You are five-years-old.

That is the sum total of what I know about you.

I don't know what makes you smile or if you ever laugh so hard your belly shakes. I don't know what comforts you when you're sick. I don't know if you dance when music plays or if you wave your hands like your directing the choir. I don't know what your favorite food is or if you like the color red.

I do know that I have failed you. My heart aches over my failure and I've lived in a haze of guilt for several months because of it. I do know that my guilt in no way compares to the misery of what's in store for you as you transfer (or have already transferred) to the mental institute.

I agreed to be a 5-5-5 Warrior for you, to advocate for you, and raise money for your adoption, to tell the world about your fate and maybe even find you a family.

I am a coward.

I wish I could say that I got busy or forgot. Even those lame excuses would be better than the truth.

The truth, dear boy, is that I am a coward. I was afraid of so many things. I was afraid that people were sick of hearing me go on and on about orphans. I was afraid that people would think I was only friends with them because I wanted their help. I was afraid people wouldn't care.

But mostly I was afraid I would care too much. It hurts to love an orphan. It hurts to allow my heart to be broken over things I can't control. It's hard to have one part of my heart in an unknown land and still deal with the here and now.

The reality that I can't protect you is hard for me to take. The harshness of your world is hard to reconcile with the ease of my own.

Added to that is my own foolish pride which knows that I'm not creative enough, persistent enough, or eloquent enough to move others to give with their hearts, to feel your plight, and to tell their friends. I couldn't do it perfectly, so I settled for not at all.

I am so sorry. I am weeping as I write this. The middle-aged mom of many from the rich country of America, ashamed to confess her failings to the poor orphan of Eastern Europe.

It is my hope that one day you will hear these words. I hope that you will sit on the lap of a woman who smells like lavender soap and calls herself "mom" and she will whisper these words to let you know that someone, in her own warped way, really cared about you when you were all alone.

I also hope that others who read these words will care and give and act to get you here.

I am not afraid, anymore, sweet boy. I know that you are not really alone. The same Jesus who is here with me is there with you. He will not give either of us more than we can bear with His help. He will give me the strength to fight for you and you the strength to hold on until someone comes for you. He will hold me as I love you from afar, and hold you as you wait.

Be strong, little one.
Love,
Tara
(If you would like to donate for Harlen, in spite of my failings, I would be so very grateful. Every little bit helps. Please go here to give.)

Signing, picnic, and VBS musings.

2011-07-13T14:28:00.001-04:00

We recently counted up Eon's consistent signs and found there are about 40 that he uses regularly. Most of them are close approximations and some are so similar to each other that we have to pay attention to context (apple and candy, or bug and bird, for examples.) I continue to be amazed by how well he communicates with facial expressions alone, though. Those big blue eyes communicate volumes!

We went to the Down syndrome Indiana picnic last weekend and really had a good time. It's fun to connect with other families and see all the kids. Of course, I can't seem to stop myself from comparing him to other kids with Ds. Seems he's doing really well, especially gross motor wise, thanks to the wonder PT, Jill. She works with him at the playground, frequently, and now he's convinced there is nothing he can't do. Which is great...and scary!

It is VBS week at church this week and for us, it's a family affair. The big girls are assistant leaders, Shawn does sound, and I work the nursery while the middles all participate. I enjoyed learning a bit about Eon last night. He is so comfortable with his brothers that he tends to be a little "in your face" with other kids. He was trying to play with a little boy about his age and he started off by tickling him. The other kid was having none of it, and I encouraged him to back off a bit. Then, he tapped the other kid and ran away, wanting to be chased. Other kid was still intimidated by this. Finally, he found a roll of duck tape and threw it, then chased it. Other kid watched for awhile and joined in and they played together.

At first, I was cringing that Eon was scaring the kid. It was obvious the boy didn't know what to do with this odd kid who doesn't speak his language. But, then I was happy that Eon seemed to sense that and adjusted his approach. He certainly isn't one to be ignored!

I also realized how nice it is that, for the most part, I am perfectly comfortable with how everyone loves and interacts with him at church. He is accepted just how he is and I hope that will always be a safe place for him and us. There are a few exceptions. There is one gentleman who means well, but I always get the vibe that he has to "try" to interact with Eon. He'll pat him on the head and say nice things, but I get the impression he's thinking he's such a great guy because he was nice to the disabled kid. Do you know what I mean? Kind of like prejudiced people who say, "Some of my best friends are black"?

Have I mentioned that I'm a little overly sensitive? :)

What's it like? (Part 2)

2011-06-22T12:02:00.001-04:00

You can find the beginning of this post here.
No one can truly appreciate another's life experience. Who should decide whose life is valuable?

The Angelina Jolies of the world - with their excessive wealth, nanny for every child, globe trotting lifestyle, etc - might consider my life to have less value than theirs.

We work hard for every dime we bring in (and by "we", I mean Shawn because he certainly works harder than me. And brings in more dimes.:) We have a small, starter home...that we've lived in for 13 years and have squeezed seven children into. We are raising these kids without outside help, nor do we have a housekeeper, a driver, or a chef. We drive vehicles that are over 10 years old. If the fuel pump goes out in the mini-van, we just don't drive it until we can afford to get another. Our vacations consist of camping in nearby parks in our tiny little camper...that leaks.

But our reality is so much MORE! We have love and laughter (daily). We have great friends and actually enjoy the work or our hands. Our children are a blessing (all of them) and we delight in them! While I prefer 5-star resorts, gourmet coffee, and theatre performances, I've learn to LOVE camping, McDonald's ice cream cones, and the $1 movie. :) My life is full and rich, even though, at times, suffering has been a part of it. (Who has never suffered?)

Wouldn't have been a shame if the Angelina Jolies got to decide my fate based on the first description?

Just because Eon will never father a child, might not marry, go to college, hold a job, etc., does not mean that he will suffer. Just because his life will not be like mine, doesn't mean he shouldn't have one.

How did we come to this - where we can project our hopes for our own lives onto our children to the point that, if they can't meet them, we decide that they must die?!?

We give women, in their darkest hour, a list of all the possible health issues their child might face and ask them to make a heart wrenching choice. They are supposed to take a gamble on what kind of life their baby might have based on a list.
It breaks my heart.

The list never told me that my child with Down syndrome would:
* make me laugh every single day
* eat with gusto everything his momma cooks
* learn to use sign language
* wrestle with his brothers
* be everybody's favorite sibling
* be such a great problem solver
* introduce us to so many wonderful people
* love music, Blue's Clues, and pizza
* have a smile that lights up the room
* be so active (and fast!)
* have so few health issues
* charm everyone he meets

No list of diagnoses and potential problems could EVER accurately describe the life of a person! I don't know what the answer is. I do know that education and advocacy help. So does prayer. I'll continue to do both. I hope you will, too.

What's it like? (Part 1)

2011-06-12T20:53:00.000-04:00

Someone recently asked me what having a child with Down syndrome was really like. She freely admitted that when they were considering having kids, they stated they would terminate if found to be carrying a baby with Ds. She did clarify that, after having kids, she is appalled at having had that thought.

When people ask me about Eon, I often don't know how to describe my feelings toward him. I certainly don't want to present the idea that I love him more than the other kids. I don't. Yet, there is something special/different about my feelings toward him. My friend, Mary Grace, sums it up perfectly in describing her relationship with her own child with special needs. "He has my heart in a way the others don't need to," she says.

Exactly.

I'm sad that the world is sold a bill of goods when it comes to special kids. I've heard women say that they couldn't handle parenting a child with special needs because of finances, lack of support, or because their life was already too complicated.

These poor women will never know what they are made of. They will always see themselves as weak or as victims. They will never experience the joy of plunging in and learning the water is neither as deep nor as scary as they once thought. They will never come to the realization that, while sometimes the water is murky, there are moments of great clarity and supreme beauty. They will only know that they ran from fear. And a small piece of them will die, too.

It makes me sad.

Currently, Down syndrome is diagnosed during pregnancy one of two ways: CVS or amniocentesis. Both tests are invasive and both carry a significant risk of miscarriage. There are screenings that are done through a blood test, but they only convey odds of T21 and are incredibly unreliable. The only way to know for sure is to have the invasive testing or wait until birth.

Until now.

All of my friends in the Ds community already know about this, but a new prenatal test for Down syndrome has been introduced in Great Britain. It is a simple blood test given around the 12th week of pregnancy. It is reported to be about 99% accurate in predicting Down syndrome in utero. It should be available in the US by April of next year.

I find this terrifying.

Currently, there is a 90% termination rate for confirmed Down syndrome pregnancies. Keeping in mind there are many women like me who know they have increased odds, but refuse the testing, this number is still unbelievably high. Many, many women are simply surprised at birth to discover their new baby has Ds. They either declined the screenings, or the screenings showed they were at low risk.

What will happen when testing for Down syndrome becomes routine and women discover, perhaps before they've even announced their pregnancies, that they are carrying a baby with Down syndrome? I'll tell you. They will abort in ever increasing numbers. The number of babies with Down syndrome born each year will drop dramatically.

It breaks my heart.

These babies are being targeted for termination. Don't let anyone tell you that this testing is to help expectant parents to prepare. That is a wonderful side benefit for those who choose to carry to term. But that is not the intent of this test. It's just not.

I've heard too many stories of my friends with a prenatal diagnosis (and many with just increased odds) being pressured to terminate. I've read too many comments on articles about this, denouncing the "cost to society" those with Down syndrome represent. (Lest you think I'm being dramatic, I calculated the ratio of positive to negative comments about Ds on a mainstream article. It was around 1:8...for every one positive comment, there were eight negative ones, usually focused on "suffering" and "burden".

(To be continued...)

Update on KJ & Eon

2011-06-11T22:37:00.000-04:00

I spoke of our concerns about Keturah in my last post. I'm happy to report that her echo came back normal and she appears to be gaining some weight from the supplementation. Yay! Our follow-up visit is on the 22nd, so we'll see where we go from there.

Eon is doing great! He is 2 years and 4 months, now. He is so typical in some ways...asserting his independence, throwing the occasional tantrum, running away when called, hiding when eating stolen candy, wrestling his brothers, pretending to "die" when shot with a toy gun, etc.

In some ways, Down syndrome seems more apparent than ever before. We are working hard on "inside voice" as he vocalizes loudly in public sometimes and I cringe. He's responding well to that, and will quiet down when I remind him (unless he's tired or hungry).

He is starting to really imitate more and more signs and we are even seeing him request things not given as a choice. For example, I asked him if he wanted to watch Barney or Blue's Clues. He thought for a minute and signed, "Signing Time". I didn't even know he could do that one! The other day, he heard the door slam and thought it was Shawn. He signed/said, "dada?" I told him that Daddy wasn't home and he signed, "Where?"

He seems to have trouble with the motor planning involved in signs and some issues with proprioception (knowing where his body is in space). Sometimes he'll attempt a sign and do it on the wrong part of his body, or make it look just like another sign when he clearly means the new one. Also, lol, he can't pick his nose. :) He will put his finger up there, then has to move it around to even find his nose, let alone the nostril, and by that time, I've put a stop to his intentions. Cracks me up!

We are adding OT back into the mix in hopes of helping him with these issues. (well, not the nose picking. LOL!)

Gross motor-wise, the kid has got it going on. He has some mad sliding skills. I was so impressed at our first outing to the park and he was able to climb right up to the slide, turn himself around and shimmy down, and then exit the slide to do it again...completely by himself! He's also learning to run and jump in PT. Even without full-on running, that kid is fast!

His receptive language skills are really good. He seems to know what we are saying, even when we wish he didn't. The kids like to quiz him. For example, they'll say random words and then throw in a food item. He'll say, "Mmmmm" every time he hears a food choice, even if it's something we rarely have! He also has very keen ears for the words "nap" and "quiet time" and will immediately start fussing if we utter them. :)

Here's a pic from a Babycenter.com meet-up. Eon had a wonderful time hanging with the princesses! :)

Fear, worry, fretting

2011-05-21T20:29:00.000-04:00

So the last few years have been something. We had Eon and the diagnosis of Down syndrome and all the appointments/specialists associated with that. Then he had a vascular ring repair. We've also had one child diagnosed with anxiety disorder after baffling behavioral issues and another started medication for long-diagnosed ADHD. I had a kidney stone in pregnancy, and after, with resulting hospitalization and lithotripsy.

It should not have come as a surprise, then, to discover that there may be a problem with our littlest peanut, Keturah (KJ). She has been a slow grower from the beginning. She weighed 7lb, 11oz at birth, but was slow to put on the ounces and was just over 10lbs at 4 months. I was concerned; the doctor was not. She was plotting on the chart in a regular way and there was no cause for alarm.

Until Thursday, at her well-baby 6-month check, when she had gained only 2 ounces. Suddenly, her weight was no longer even on the chart and we were discussing failure to thrive work-ups. We decided to supplement for a month and reassess. Until he heard her heart and detected a murmur. "Have I heard a murmur on her before?" he asked. Nope. And he scheduled her for an echo-cardiogram.

I took it all in stride. In my Down syndrome world, echos, heart issues, and supplementation are all the norm. I am comfortable discussing these things. Only, this is not my hearty kid with Down syndrome. This is my tiny, delicate princess with the typical number of chromosomes. And I am terrified.

In retrospect, I can see so many signs for concern. She has always been "my putziest nurser" I've often said. She takes forever to finish feeding and usually falls asleep long before she's done. She sweats more than the others did. I can see her freakin' ribs when I change her diaper. (DUH!)

So now we wait, with Dr. Google close at hand and all the terrifying possibilities.

I find myself worrying and fretting.

Have I learned nothing over the past two years?!? God's got this. This does not take Him by surprise. Worrying doesn't do any good and cannot change the outcome of any situation. In fact, my life verse is Psalm 37:8b, "Do not fret - it only causes harm." (Other people get really cool life verses. God is very practical with me. :)

God loves my little princess even more than I do. He has a plan for her life, as He does mine. His grace is sufficient for me.

Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. Phillipians 4:6

Happy Mother's Day!

2011-05-07T21:07:00.000-04:00

Enough Kids?

2011-04-24T15:42:00.001-04:00

People that we are close to expressed their displeasure recently at our desire to adopt. "Don't you think you have enough kids?!"

This would be my response if I thought they would hear me:

It's not about a desire to have more kids. We have seven. By most people's standards, that's a lot. Often, we even think it's a lot, but usually, it just seems normal. We are imperfect people and an imperfect family. There are times when I think we've got it goin' on...and times when I feel like we're the Beverly Hillbillies. But when I look closely, I can see God's design.

There are an estimated 147 million orphans in the world, today. That number is too big to wrap my brain around, so I look at individual children that I'm aware of that have nobody. I look at the pictures on Reece's Rainbow and imagine what those kids are like. Who delights in them? Who encourages and challenges them? Who loves them?

No one.

I imagine them living the life they've always known, in the same groupa with the same caregivers, playing with the same toys (if there are any), looking at the same walls...when, suddenly, at the age of five, they are jerked from that environment...ripped away from all they've ever known...and taken to a dark and scary place. There, they are tied to a bed or crib and left alone. I imagine their tears (which are ignored) and the noises which leave them terrified. Screams, moans, cries, and profanity assault their innocent ears. Most of them die within the first year.

And I think of my children.

If you asked them, they would tell you they have a rough life. They don't have the electronic gadgets many of their friends do. They are forced to share a room with siblings. Most of their clothing is second-hand. I lose my patience and yell, sometimes. (Okay, maybe a lot). They are required to do chores and take care of each other. Their younger siblings break their stuff.

They are blessed.

Quite simply, we believe we have something to offer the orphan. A small home, an imperfect family, siblings to play and fight with, parents to delight in them (and yell at them, from time to time), and the love of their Heavenly Father.

We are under no illusion that it will be easy. We don't expect our future children to show us any gratitude for being rescued any more than our current children do for not having to be. Children are generally selfish, messy, loud, and exhausting. Kids who were raised in orphanages come with emotional baggage, usually expressed behaviorally. Parenting is seldom easy, no matter where you get your kids.

Do we have unrealistic expectations about what it will be like? I'm certain that we do. We sure did when we were expecting our first, when we added a second, and when we set out to have a large family. No one can adequately prepare you for the future.

I believe that's where grace comes in to play. God promises to be our strength in weakness. He tells us that He has given us all we need for life and godliness. He assures us that His grace is sufficient. I imagine it will be. It is now.

I didn't know about the fate of children punished for simply having an extra chromosome before we had Eon. I do now. I cannot pretend I don't. I believe that would grieve the heart of my Father. He is a champion of the weak. "Let the little children come to me," He said. He called caring for orphans "pure and undefiled religion," and He likens caring for "the least of these" as caring for Himself.

"Rescue those who are unjustly sentenced to death; don't stand back and let them die. Don't try to avoid responsibility by saying you didn't know about it. For God knows all hearts, and he sees you. He keeps watch over your soul, and he knows you knew! And he will judge all people according to what they have done." Prov. 24:11, 12 NLT

We are not in a position to adopt, at this time. We don't meet the minimum income requirements for our family size. That's a hard pill for me to swallow, sometimes, but I believe God's timing is perfect. Until then, our hearts are willing. We advocate for orphans and support the adoptions of others. And we pray....oh, how we pray...that the precious children waiting will find their way home.

Back Home Again, In Indiana*

2011-04-12T14:57:00.001-04:00

When Eon was born, I received numerous copies of the essay, "Welcome to Holland." Although, I didn't agree with everything in it at the time, I thought it was a good enough analogy for what we were experiencing. I've since learned that some of my fellow moms in the Down syndrome community really loathe that essay and some really love it.

My friend, Patti, recently wrote a blog post about her response to it and where she is now, that made me think about it some more.

Now that I am more than two years into this journey, I feel like I lived in Holland for a little over a year. During that time, I ate, breathed, and slept Down syndrome. I read journal articles, joined support groups, blogged and read blogs, connected with other mommies, and advocated until I was blue in the face. Anything related to Down syndrome was worth my time.

If Holland is the analogy, then I learned the language, wore wooden shoes, and ate dutch food. I did feel like I was navigating the back roads of a foreign land.

Eon is now 2 years and almost 3 months-old. I feel like we emigrated back to Indiana. I enjoyed my time in Holland. I learned so much and connected with some amazing people who will always be part of our lives. I brought home useful and beautiful souvenirs. I still know the language and occasionally cook dutch food and wear my wooden shoes.

But I don't live there, anymore.

Down syndrome is a part of our lives and always will be, but it is no longer front and center. It is not the defining part of who we are.

Eon's needs fit with the needs of the other kids. He needs his juice thickened to prevent aspiration, Ellie needs to take her ADHD medication, Ben needs a schedule to plan for his day, Zak needs reminders to flush the toilet, etc. Everyone's needs are special to them and, because they're my kids, they're special to me.

Eon is a kid with Down syndrome. He is also one of the Lakes' kids. I finally see him as more of the latter, than the former.

I love Holland, but there is just no place like home!

*Back Home Again, In Indiana is our state song, most famously sung by Jim Neighbors (of Gomer Pyle fame) before each Indy 500 Race.

Suffering

2011-03-13T16:24:00.000-04:00

"I just couldn't let my child suffer." That line is used a lot to justify terminating a pregnancy for Down syndrome. Those of us parenting a child with Down syndrome would be quick to dispel the myth of "suffering" when it comes to our kids.

But, in thinking about the last week, I realized Eon really does suffer, at least in his mind.

He suffers every time he gets a flick on the hand for plucking the pacifier out of his baby sister's mouth. He suffers everyday around 2:00 when he is laid down for his afternoon nap. He suffers when his mean old mom hands him a cup of milk and he wanted juice instead, or when she makes him get down when he's standing on the dining room table, or when he walks into the bathroom signing "bath" and no one will give him one. If his response is any indication, he suffers every time someone has the audacity to go against his will.

He's enduring all this suffering, not because he has Down syndrome, but because he's two. And he's really, really good at it.

The dictionary defines "suffer" as: to undergo or feel pain or distress. While most of the above wouldn't qualify as pain, judging from his reaction, there is no small amount of distress.

We, his parents, learned a few kids ago that causing a 2yo some distress by not letting him get his way all the time will save him (and us) from more severe distress in the future. So, ya, Eon's going to suffer. We expect him to grow into a mature, responsible adult, just like we do his siblings.

I wonder about those parents who would choose death over suffering for their children. Who has ever escaped pain or distress in this life? Who's to say that escaping them is desirable or the best outcome?

Well, besides Eon, of course. ;-)

I got my baby back, baby back, baby back!

2011-03-09T15:42:00.000-05:00

This poor, neglected blog. Sigh. It's not just the blog, it's facebook, and babycenter, too. I needed to unplug for awhile to devote my attention to real life stuff. I hate when life gets in the way of my socializing!

February was a rough month for Eon. I'm not sure what was going on with him. He started waking up at night, every night, and was just kind of whiny and demanding. Basically, he acted like a 2yo and he's really good at it! More concerning to me was that he seemed to have gone backwards with communication. He lost most of the signs he was consistently using and almost all of the words he used, too. It was disheartening. Every sign he even attempted to imitate looked exactly like "stop".

In the last few days, he's started sleeping all night, seems more engaged and happy, and more importantly, has begun signing again....imitation and spontaneous! I have no idea what was going on with him, but I feel like he's back and I am beyond blessed!

So what did you do this week?

2011-02-12T15:56:00.001-05:00

I just spent several days in the hospital after my large kidney stone - remember the one from my recent pregnancy? - decided to rear its ugly head. I was sitting in my beginning crochet class on my birthday (gift from my awesome husband) when the familiar pain about took my breath away. I thought it would eventually recede back into the kidney like it did before and was determined to outlast it. I threw in the towel 12 hours later and headed to the ER. Kidney stones hurt!

After receiving pain meds (ahhhhhhh) and a stent to allow for good urine flow, I was sent home. The next day, I awoke with a fever which kept climbing until it was above the "call the office if you develop a fever greater than 101F". Mine was 102.7. They sent me to the ER, where we waited for 3 1/2 hours before being called back to see a doctor. After giving me more pain meds (ahhhhh) and fluids, they decided to admit me.

In 2008, I had similar kidney stone experience. I had a lithotripsy (shock to the kidney to break up the stone), received a terribly uncomfortable stent, and (long story short) ended up in the hospital with candida sepsis and almost died.

The morning after my recent admission, in walks my urologist who cared for me during my last debacle (much of which was the fault of one of his partners). He walked in and said, "I thought it was you! How many kids do you have, now?"
And then I remembered: He was just in awe of the fact that we had 5 kids at the time. He talked about it every time he saw me. He could not imagine how we afforded all those kids and how we handled them. He asked tons of questions about it.

When I told him we now have seven, he was, of course, incredulous. He asked the same questions all over again and I laughed. I responded like I always did.

But it made me think.

It's obvious he doesn't know many moms of large families. The few times he's seen me, I've been at my worst, in a medical crisis. I looked awful...exhausted, stressed, sick. I'm sure any other moms of many he sees in his medical practice look the same because of when he sees them.
What if he decides from those encounters that moms of many have a poor quality of life and must suffer a great deal? They are exhausted, stressed, and sick. What if, when he saw my husband who looked stressed, as well, he deduced that I'm a burden to my family? I'm now someone who's in and out of the hospital. He's never seen me laugh with my kids, or hang out with my friends, or date my husband, or enjoy my job, or any of the things that make my life great!

Maybe it's a bit far fetched (or maybe not...he was really focused on our large family:), but I'm afraid that's what happens when doctors see children and adults with Down syndrome. They see these folks in a medical crisis and make the leap. They decide that theirs is a life of poor quality. They see the number of hospitalizations or the severity of an illness and decide that patient has a miserable life, as if a medical record can ever adequately describe the life of a person. They never see the patient laughing, loving, living. They never see the in between times. They only see the stress, the sickness, the fear.

Often they assume the negatives must also be true of every other person affected with Ds. Just like my doctor will never see the thousands of healthy moms of many, other specialists will never see the thousands of healthy people with Ds.

So when people with a prenatal Down syndrome diagnosis ask them about quality of life for those with Ds, they answer with their experience, and their opinions formed from their experience. And that's just not accurate.

And it's not good enough.

Thankfully, it's no longer all they have to go on. Lettercase now offers a brochure to medical professionals called Delivering a Down Syndrome Diagnosis. I am told it's excellent and of the highest quality and most accurate information. They plan to deliver them to 10,000 perinatologists, obstetricians, and genetic counselors this year. That will only be a fraction of the number needed to be distributed. It is incredibly expensive to publish and distribute and they could use our help. Please visit the site and consider making a donation or, at least, purchasing a brochure and delivering it to your healthcare professional. If even one woman chose to continue her pregnancy because of it, wouldn't it be worth the cost?

Pure Love Giveaway

2011-02-01T15:27:00.000-05:00

A few nights ago, Eon fussed in the middle of the night and would not settle down. After trying a cup and a diaper change, I finally just hauled him into bed with us. I rubbed his back and let him lay on me for awhile. He ended up lying between us sideways (why do kids always end up that way?) with his feet basically in my face.
I couldn't sleep. I just laid there thinking how blessed he is to be born in this country, into our family. I couldn't help but think about all the other toddlers who will never be comforted in the middle of the night and who will never know the soft touch of a mother's hand.
I've read before that institutionalized babies don't cry. They learn quickly that it does them no good. There is no one to soothe them or meet their needs. A researcher from Harvard Medical School studying Romanian orphans recently divulged that the institutions were "eerily quiet".
Some of the adoptive moms have mentioned that they had to teach their children how to be comforted. It was a foreign concept to them.
We have to stop thinking that this is someone else's problem, that someone else will meet the need. Because someone isn't. An estimated 147 million orphans do not have anyone to smooth the hair off their foreheads, or rub their backs, or kiss their noses....acts we, as mothers, perform countless times a day.
My friend, Patti, though she is unable to adopt at this time, is working to change that for a few kids. Please visit her blog to join her "Pure Love Giveaway". She has lots of great prizes so you can help an orphan and maybe win something. I should know...I read about it on my iPod Touch that I won in her first giveaway! :)

The Tsunami

2011-01-28T13:13:00.000-05:00

When it comes to emotional topics, I like to write a blog post after I've reached a conclusion, when the emotion is past and I feel I've resolved something within my mind.

But my emotions are running high right now and I feel there is no solution. There will be no tidy package with a neat little bow for this crisis.

My heart literally aches over the 92% termination rate for Down syndrome pregnancies. I am burdened for the women who have made the choice to have their young killed out of fear, ignorance, and, yes, selfishness. I am burdened for the lives of children eliminated and tossed away simply for being different than what was expected.

And I am terrified for the many yet to be targeted. A test is coming that will guarantee the almost complete annihilation of a whole class of people. Right now, many women give birth to babies with Down syndrome unaware. They are surprised to discover soon after birth that their child is sporting an extra chromosome. While they are usually shell-shocked initially, love for their child saves the day and they come to learn that life with an extra 21st chromosome is a life worth living. Most eventually discover that they wouldn't change a thing, even if they could.

Soon, a surprise like that will be almost unheard of. A simple, non-invasive, accurate blood test will be available within the year to diagnose Down syndrome during pregnancy. Some women will still choose to continue the pregnancy. Most will not.

You may think I am being overly dramatic, but I have heard too many mothers of children with Ds, honestly confess that they are glad they didn't know. They don't know what they would've done had they had a prenatal diagnosis. I have read too many negative comments following news articles about the new test to pretend like it is good for women to have "all the information available to them." And I have read too many stories from women who were pressured to terminate in subtle and blatantly obvious ways from the healthcare professionals treating them, to believe that these women are being given accurate and current information and making informed decisions.

Honestly, I barely see people with Down syndrome in my community as it is now.

I advocate all the time. I spend more time than I should on birth boards, the amniocentesis board, the prenatal testing, and poor prenatal diagnosis boards of Babycenter.com giving accurate information, showing pictures, and sharing snippets of normal life in an effort to dispel some myths and fear surrounding Down syndrome. I blog about our life and our boy. I post articles and facts on Facebook. I take Eon out into the community and "show him off".

I fear it does little good.

I feel like I am standing on the shore with a cup, trying to hold off a tsunami.

There is a tidal wave of ignorance, bigotry, misinformation, deception, convenience, ambivalence, and fear threatening to wipe out people like my son. My cup of truth seems paltry in comparison.

I feel discouraged and helpless.

No idea what to title this...

2011-01-27T09:53:00.001-05:00

(I usually reserve posts about overtly spiritual things for my other blog, Remnant of Grace. However, as this post also discusses Down syndrome, I've decided to post it here, as well.)

I’m beginning to think that legalism is the root of all kinds of evil. We often think we are impervious to it, but clearly we are not. It infiltrates our subconscious and colors the lens through which we view others and ourselves. It causes us to act in ways which are inconsistent with our beliefs and contradictory to our hearts. It places a price tag on that which is free and keeps us from ever walking in victory.

More lethally, it keeps others from having a relationship with Jesus. Other people latch onto our particular brand of legalism, and follow along, looking the part. But, in a moment where true relationship would keep them from disaster, the rules of legalism just force them underground.

Meet Julie, a married mom of a 3 1/2 year-old daughter. She comes from "a religious family" (her words). After struggles with both primary and secondary infertility, she finds herself pregnant with a much wanted little boy. Unfortunately, Julie discovered from amniocentesis that her son is sporting an extra chromosome. Down syndrome was not part of the plan and she is terrified. She also admits that she is very, very angry at God for playing "this cruel joke" on her.

Julie wants an abortion. But, she is struggling with that decision because of her "religious family." The only person that she has shared her son’s diagnosis with is her sister, who is championing that Julie and her husband will do a great job raising a child with Ds. Julie has not shared with her the desire/plan to terminate, because she is worried that her sister will "think less of her."

I can’t help but wonder. If Julie’s family were less religion and more relationship, would that make a difference in this situation? If she were not worried about judgment from them for breaking the rules, would she be able to share her heart and be heard? Would the love and support of her family change the outcome for both Julie and her baby? Would she have already come to a saving knowledge of Jesus Christ?

If she had relationship with Jesus, instead of a desire to keep up appearances, she would already be convinced that, because God loves her and her son, He must have a plan for her precious baby’s life that includes his extra genetic material. She would know that he is being knit together in secret for a purpose, and that he is being created in the image of her God. Termination might have been her gut reaction to the mind-numbing fear, but it would have garnered no serious consideration.

What about the rest of us? Are we living according to some moral code that applies to other people’s situations? Do we know that abortion is wrong because it just is…and because we would never find ourselves in a situation where we would be tempted? Or do we know it’s wrong because of a gut-wrenching knowledge of the Father’s heart? Can we be real with the Julies of this world and say, "I know your fear. I’ve had it, too. I, too, just wanted to make it go away," and then encourage them that God knows, and that only He can bring them peace?

Or do we shake our heads and click our tongues and declare, "I could never do that to my baby," knowing that it is unlikely that we would ever find ourselves in that situation.

It is easy for me to sit on this side of it and judge. Today, I find myself judging the unknown "you" that are steeped in legalism, reacting only to the intent and not responding to the heart. Tomorrow, in my frustration, I will judge the sinner, too. I will be so frustrated and feel so helpless that I could not make her see the truth, when the truth is not mine to reveal. I will feel holier than thou because I’m living this life, and she chose to throw it away.

How is that different? Unfortunately, it’s not. If I had a living, breathing Julie in my life, I would hold her hand and let her cry. I would listen as she processed. I would validate her feelings and pray with her. I would lovingly share truth with her and pour everything I had into her. And then if, in her fear she chose wrongly, I would walk away in disgust and horror.

When will my eyes be Yours, Lord? When will I hear with Your ears? How long must I live this selfish life? Why does it always come back to my foolish pride? I pray for grace, dear Lord. Grace to love my brand of unlovables. I pray for grace to own the mercy you have so freely given me, so that I can freely give it. Change my heart of stone.

(I wrote this post in October of 2009. I don't know what Julie chose to do, but since she broke contact with me, I think I can safely guess that she chose to abort her precious son. Given the new, non-invasive blood test for Down syndrome diagnosis in pregnancy that will be here in the US within the year, the likelihood of many more stories like Julie's is great. Do we have what it takes to love them all?)

Things I wish my children knew

2011-01-23T21:18:00.003-05:00

Here are 5 things I wish my children knew:

Everything is not an emergency. There are true emergencies in life. They usually involve blood or fire. So, unless there is blood (must be dripping or spurting) or fire, do not interrupt my phone call, bathroom break, or nap. Really, don't. Because then we might have an emergency.
There are injustices in the world. Children sent to mental institutions just because they have an extra chromosome is one of them. Getting a smaller piece of cake than your siblings is not.
Honesty really is the best policy. Why? Because you stink at lying. I will catch you and, even if I can't prove you are lying, we both know you are. My trust in you plummets to zero and neither of us wants that. I allow very few good things to happen to you when I don't trust you. So, just tell the truth.
I love you. I believe in you. I am behind you. I am your biggest fan, your greatest champion, and your strongest supporter. I am incredibly blessed to be your mom!
God is real and He is good. Never stop talking to Him, even if you're mad at Him. He's big. He can take it. It is hard for me to believe this, but He loves you even more than I do. He will never leave you. Ever. He will never fail you. I have failed you before and I probably will again, but He won't.

That's my list, so far. What's your list?

Taking Bites!

2011-01-10T16:08:00.003-05:00

Based on my research, I anticipated all kinds of feeding woes with Eon, but we have been really blessed. That boy loves to eat! He has done really well and has been on all table foods since about 14 months.

That's not to say we haven't been cutting his food into tiny little bites every meal, though. He understands the concept of taking bites from larger food items. He will take bites if we are holding it and cue him, but was unable to handle having total control of a larger item. If given a quarter of a sandwich, for example, he would shove the entire thing into his mouth.

However, the other night, I cut half of his hamburger into pieces for him but accidentally left the intact half on his plate. Meals are, um, lively around here and I just wasn't paying attention to him. When I finally glanced over, he was holding the half of sandwich and taking bites!!! I watched him finish the whole thing, taking very appropriate bites with good chewing and swallowing. I am so excited!

Now, if I could just get him to scoop his own food with his spoon. This is how it goes right now. I scoop a bit of food on his spoon and leave it on his plate. He picks it up and puts it in his mouth. Then he hands me his spoon. I tell him to scoop it but he insists. I place my hand over his and guide him to scoop some food. He puts it in his mouth. Then he hands me his spoon, again. We do this a few times until I get distracted and he finally drops the spoon and goes at it with his hands.

Sigh. Baby steps. :-)

Cringing!

2011-01-09T09:26:00.003-05:00

I don't want to offend anyone. It's funny how we say that followed by a giant "BUT" meaning that we most definitely will offend someone. Truly, that is not my intention with this post, but something really rankles me and I need to speak to it.

Twice in the last few weeks, I have visited blogs of adoptive parents. They have both adopted children with Down syndrome, which is fantastic! They are both amazing women and wonderful mommas. I have great respect for them. (here comes the "BUT"...are you ready for it?)

But, they both refer to their children with Ds as "downsies". Just writing it out raises my blood pressure. I tried seeing it from their perspective. I understand that they view it as a term of endearment. They obviously love these kids. They are smitten with the characteristics that make them unique. They use "downsie" as a pet name for their cherished children.

The problem with pet names, however, is that they often make the designee seem like, well, pets. It puts these kids in a separate, cutsie category from the rest of the family, even the rest of society. It makes them seem slightly subhuman. Even with the best of intentions, calling children with Down syndrome "downsie" sounds condescending and even demeaning.

You may think I'm over-reacting. Perhaps I am, but imagine if these same families (both white) had adopted children of another race. What if they, loving the characteristics that make their new kids unique, chose to call them "darkies"? Would that be acceptable? Does that make you cringe as much as "downsie" does me?

One problem I have with this terminology is that I have found that there are two camps in the general public when it comes to attitudes about Down syndrome. There is the "burden" camp: those that believe people with Ds contribute little to society, are a burden to their surviving siblings when the parents pass on, and that it's even irresponsible to carry a Ds pregnancy to term. That camp deserves a post of their own.

The other camp is the one that's pertinent to this discussion. It's the "sweet" camp, as in, "Ahhhh, they're so sweet". Of the two, I prefer this one, but neither are accurate. People with Ds experience the whole range of human emotions and attitudes. Eon is alternatingly sweet and crabby, easy-going and stubborn, happy and mad, just like the rest of us.

"Downsie" sounds very much like it came from the uneducated sweet camp. I know of self-advocates, young adults with Ds, who are struggling to be taken seriously. They have to overcome unbelievable obstacles to earn the respect typical people are afforded at birth. Parents who call their children "downsie" are perpetuating the stereotypes that are limiting these individuals. In so doing, they are limiting their own children and decreasing their potential. They are also limiting my child.

The other problem I have with this label is that it shows that these moms, as awesome as they are, have not spent a great deal of time immersing themselves in the Down syndrome community. I wish they would. They would quickly learn about "people first language" and correct terminology, but more importantly, they would have instant support and answers for questions about medical problems, IEPs, best toys, behavioral issues, nutrition, speech/language, therapies, potty training, etc. That would be the best for their kids. They wouldn't have to rely on the, often uninformed, medical community for answers. We in the Ds community would benefit from their ideas and input, as well.

One day, I hope to join these women in adopting a child with Ds. But please note: That child may have Down syndrome, but will also have the same respect, status in the family, and unlimited potential as his siblings. While we will love him dearly and, I'm sure, find him incredibly cute, he will not be a "downsie".

Wordless Wednesday

2011-01-05T16:17:00.001-05:00

Sleep study

Reverse Comparison

2011-01-04T19:38:00.002-05:00

I often read posts on my online support group from moms comparing their little ones with Down syndrome to typically developing kids. Today, I want to reverse that and compare my typically developing baby with Eon at the same age.

Keturah (KJ) is 7 weeks old. She is just starting to have a longer (up to 6 hr) stretch of sleep at night. Eon was sleeping 12 hours straight at this age.

To fall asleep, KJ needs to be nursed, rocked, jiggled, and shushed. Eon needed to be laid in his crib.

On car rides, someone needs to sit next to KJ and constantly stuff her pacifier back into her mouth. Eon slept or watched his toys quietly.

When I'm cooking dinner, someone has to have KJ duty and walk her around the living room to keep her from wailing. Eon sat contentedly in his bouncer seat for 45 minutes in the kitchen with me.

When being held, KJ's whole body seems to be tense, like she wants to be moving. Eon just melted against my chest.

Don't get me wrong, I LOVE this baby with all that is in me. She is a blessing. But she is very high maintenance. I worried about how I'd cope with a "typical" child after enjoying the blessing of a baby with Down syndrome. The answer is: not very well. I try not to compare her to her brother, but I'm not very successful. And they say Eon is the one with special needs. LOL!

Oddities

2011-01-03T16:11:00.003-05:00

In researching Down syndrome after Eon's birth, I discovered the general consensus was that he would be "more alike than different" (from typical kids) and that he would just learn to do things a little slower.

While those things are certainly true, I'm discovering there is a little more to it than that simplistic explanation. I expected that he would take forever to learn to crawl, walk, feed himself with utensils, etc. Those are things my typical kids struggled a bit to master. I was right. We're still working on utensils.

There are also things that I did not anticipate that he struggles with. He has been working in PT on sitting in a low chair or stool. He loves to sit on things his size, he just can't seem to figure out how to do it. He approaches the stool, and rather than just turn and sit, he tries to climb onto it from the front. That doesn't work. After several attempts, he generally ends up straddling it. I never noticed my typical kids learning this skill. They just knew it.

The wonder PT, Jill, is teaching him to walk backwards to sit down. Which is a great idea...except Eon generally sits about a foot in front of the actual chair. After he sits short of the chair, he turns, surprised to see the chair behind him. (Terrible mom alert: I laugh every time. It is just too cute and I can't help myself!) You'd think this would be terribly frustrating, but he just gets up and tries again.

Another thing that he cannot seem to master is getting off the bed. We have a king-size bed and he has found ingenious ways of getting onto it. His favorite is to push the desk chair over, climb onto that and then onto the bed, but he's also been known to stack books into a pile to climb on, too. Getting off is a whole 'nother thing. By the time he's ready to get off the bed, someone has invariably moved the chair. For almost an entire year, we've been telling him, showing him, helping him to "turn and shimmy" off the bed to the floor. Sometimes, he actually does it, but usually, he just sits and whines until someone rescues him. Not sure what's up with that.

I also kind of expected that once he "got" something, he would have it mastered. That was true of crawling and walking (although his balance isn't that great, yet), but not at all true of speaking and signing. He gets a word and will use it frequently and correctly for several weeks only to "lose" it and never speak it again, or at least for a long while. We have seen "doggy", "ball", "Micky", and "book" just disappear. It is baffling and beyond frustrating to me. The signs that have disappeared seem to reappear much more quickly, although I haven't seen "again" for several weeks.

Those little quirks aside, he is doing great! He understands almost everything and follows commands really well. He's starting to string 2-3 signs together to make "sentences". He is really in tune to other people's feelings and feels really bad when someone is upset. He tries to make them feel better. When his baby sister cries, he will go and get her blanket or get her pacifier (and put it on her forehead - cracks me up!) The other day, he accidentally hurt his older sister and he just looked devastated. He signed, "hurt", "Ellie", and "sad", then folded himself in half and cried.

Maybe it's the therapist in me, but I find the way his brain processes fascinating. I can tell we are in for a wild ride! :)

Pics of cuteness

2011-01-01T17:21:00.005-05:00

Last day as the baby of the family.

Whoa! What's this thing?!?

Ahhhh. Good old therapy.

Baby sister decked out in Christmas duds.

Cheesy grin now given whenever he sees the camera.

Reflections. 2010 was a pretty good year.

Happy New Year, everyone!!!

Doubt, reposted

2010-12-31T20:30:00.003-05:00

This is a post I wrote back in March. I revisit it from time to time because I need to. I wonder if there will come a time when I won't. In the meantime, I thought I'd repost it for anyone who missed it the first time around.

doubt

(It starts as a whisper, a tiny niggling in the back of my brain.)

Recently, I posted a comment on a site stating that I am proud of my son's designer genes, that Down syndrome is part of his charm, and that his chromosomal enhancement is actually kind of cool. The responses were less than stellar. "Is this a joke?!" "A birth defect isn't cool!" "A genetic accident isn't something to be celebrated...it's a tragedy." "That's like saying leukemia or other diseases are cool."

Birth defect......Genetic accident........Tragedy......Disease

Doubt

(A little louder now, more insistent, it pushes forward toward the front of my conscious mind.)

Eon just got over being sick. He was sicker than the rest of us......again. Sometimes, I think he's doing phenomenally well, but, sometimes, I notice things like him staring at his hands in endless fascination or seeming not to recognize his own name and I wonder. Is he fully there? How much is he really getting? How far can he go? What is his purpose?

Sicker.......Staring........Purpose

Doubt

(Starting to sink a little into the abyss of fear.)

Can I do this? I feel inadequate. The thought of being the mom of a kid with special needs is overwhelming at times. Am I doing enough? I feel like he just hangs out with us most of the time. I rarely do structured therapy with him. We're not doing flashcards or an early reading program. We play with him and include him in our lives, but is that really all he needs? Am I strong enough to deal with all the therapies, appointments, and advocacy?

Inadequate.......Not doing......Overwhelming.......Enough

DOUBT

("Help me, Lord," I whisper.)

(and then...)

For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be. Psalm 139:13-16

So God created man in his own image, in the image of God he created him; Genesis 1:27

You created......Wonderfully made.........Image of God

truth

(Yes, he is fearfully and wonderfully made. He was created in your image. You planned his days long before he was born.)

For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11

The Lord will fulfill His purpose for me; Psalm 138:8

Future.......Hope.......Purpose

Truth

(Of course! You, oh God, have plans and a purpose for both of us. How do I fail to see it sometimes?)

I can do everything through Him who gives me strength. Philippians 4:13

But He said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. 2 Corinthians 12:9

Strength......Grace......Power

TRUTH

(You are my source. You are my strength and my shield. I can do this through you and you alone. I am not strong enough, but I don't have to be. As always, you are.)

God Cares

2010-12-30T21:07:00.003-05:00

Julia and her husband adopted Aaron from Ukraine this past year. He had been transferred to a mental institute a year before they were able to rescue him. In country, they ran into difficulties and spent a good deal longer there than they were anticipating. They visited Aaron everyday and began to get a very bleak picture of the lives of the boys who lived with him in the institute. She calls them "The Lost Boys" and has been shouting from the roof tops about their plight. Today, she reveals some good news, that only God could bring, about "her" boys. Please read the entire story here. ***Warning: You will need tissues. God cares so deeply for these children. Shouldn't we do the same?

Moments of Sadness

2010-12-27T11:50:00.004-05:00

I never really went through the grieving process I was apparently supposed to have when I had a baby with Down syndrome. I did experience about 5 minutes of raw fear after getting the diagnosis before they placed him in my arms. Once I held him, I knew it was going to be okay. A friend of mine had been updating family and friends during labor. I called her about 20 minutes after delivery to tell her he was here. I said, "He's here! Simeon Israel. He's the cutest baby with Down syndrome we've ever seen." She responded that she was sorry and I said not to be...that he was perfect. I meant every word. I also joked that we needed to get one of those bumper stickers that says, "My child has more chromosomes than yours". Acceptance came easily for me.

I don't know if previously considering adopting a child with Down syndrome or knowing I had a high risk helped prepare me, but I never got depressed over it. I have had moments of sadness periodically, though. Very few and far between them almost two years into it, but sometimes they come out of nowhere.

I had one the other day. I was shopping at Aldi and I heard the familiar sound of an insistent "Uhhhh!" I recognized it because Eon hollers it frequently when he's excited or wants attention. I don't notice it much at home because all the kids are loud around here. But in the middle of a crowded store, it was noticeable. As I was bagging, I saw her. She was standing in line with her mother pretending to talk on a cell phone. What she was saying was completely unintelligible, but she was obviously enjoying herself. She looked to be about 7 or 8 and had on the cutest sparkly tennis shoes.

I never know how to approach people, especially if Eon's not with me, but I decided to go for it. I walked up and said, "I think we have something in common. My youngest son has Down syndrome." The mom brightened and asked me how old Eon is and we chatted for a minute. Then I asked how old her daughter is. I was completely unprepared for her response. "Sixteen," she replied. My heart dropped into my stomach and I hope she didn't catch the dismay I'm sure I wore on my face. I mumbled something to the girl about being a "tiny little thing" and that I liked her shoes. She didn't appear to understand me.

We chatted some more and she mentioned something about "the other little girl I watch that's a month younger than her"...

Another 16 year-old that needs a babysitter?!

You're probably thinking, "Duh. Of course a teen with Ds might need someone to watch them." I know that cognition varies with individuals and people with Ds function at different levels, but I guess I hadn't gotten that far. I was unprepared to see a young woman with Eon's condition still engaging in behavior that Eon currently enjoys (loudly vocalizing and pretending to "talk" on the phone). It threw me.

And, the encounter has stayed with me. I'm still trying to process it and my response to it. I just assumed Eon would progress beyond the toddler he currently is. He is so typical in many ways, I sometimes forget that he's behind in other ways. My expectations for him are high. Now, I wonder if they're too high.

As I was writing this post, Eon walked over to Keturah's crib, signed "baby" and then, "sleeping". I asked him if he wanted to sit in my lap and he climbed up. He's doing great and I am so proud of him! I just need to remember to take it one day at a time.

Our Christmas Letter

2010-12-15T20:35:00.002-05:00

I decided to write a different kind of letter this year. It seemed trivial to write about our achievements when none of them matter for eternity (with the exception of our newest addition, Keturah Joy:) and someone's life hangs in the balance. This is the letter I sent, instead:

Dear Family & Friends,

Merry Christmas! Instead of a traditional Christmas letter, we want to share with you what God has placed on our hearts in hopes that you will partner with us in changing lives.

Earlier this year, I prayed that God would break our hearts with what breaks His. Turns out, there is much that breaks His heart and the pain is almost overwhelming at times.

Most of you have heard us talk of Reece's Rainbow, an adoption ministry focused on finding homes for children with Down syndrome (and other disabilities) in other countries. Here in the US, there is a waiting list of families looking to adopt a child with Down syndrome. (There is also a termination rate of 90% for Down syndrome pregnancies, but that's another topic.) In other countries, when a baby is born with Ds, that child is left at the hospital and then sent to an orphanage, or "baby house", where they are available for international adoption. Once the child reaches the age of 4-5, they are sent to a mental institution (Please, please click on the link and watch. It's difficult to watch, but necessary to fully grasp what we are trying to communicate.) This particular institution is in Serbia, but very similar to those in Ukraine, Bulgaria, and Russia.

Elizabeth is a little girl who enjoyed an early childhood in one of the better orphanages (they actually have toys to play with). She was recently transferred. Please see some cute pics of her and read her story here.

Can you imagine? Can you imagine the fear and confusion she felt when she was transferred? Can you imagine the fear and hunger she feels right now as you are reading this? Can you imagine one of your children experiencing that? We can, and it's breaking our hearts.

"Once our eyes are opened, we can't pretend we don't know what to do. God, who weighs our hearts and keeps our souls, knows what we know, and holds us responsible to act." Prov. 24:12

Patti, a fellow mom of a child with Ds, is determined to see that another little girl, Olga, does not have to experience a similar fate. Olga in nearing transfer. Patti's family doesn't meet the income requirements to adopt, themselves, but she is working to see a Christmas miracle of a fully funded adoption account for Olga. So many families are willing to adopt, but the cost (around $20,000) is prohibitive. If Olga's account is funded, a family will step up to adopt her, to save her from life in a mental institution. When Patti started her efforts to spread the word only 10 days ago, Olga had less than a hundred dollars in her fund. Now, she has over $10,000! We are halfway there!

Visit Patti's blog to learn what the current count is and to find out how to donate. Pray and ask God what He would have you do for the "least of these". Ask Him how He would have you save a life. Be part of a Christmas miracle this year!!!

Please, visit the links I've provided and learn more. Feel free to pepper us with questions, as well! There are currently 147 million orphans in the world today. We cannot save all of them; but, we can save this one!

And the King will answer and say to them, 'Assuredly, I say to you, inasmuch as you did it to one of the least of these My brethren, you did it to Me.' Matthew 25:40

We challenge you to pray, as we did, that God will break your heart with what breaks His this year. Be prepared for Him to rock your world. :)

With much love and gratitude,
Shawn, Tara, Michaela, Elliana, Atalia, Benaiah, Zakkai, Simeon, & Keturah Lakes

The plight of the orphan

2010-12-06T10:45:00.003-05:00

This breaks my heart. I can only believe that Jesus is with her and will protect her like we're asking Him to do.

At Peace

2010-11-23T11:56:00.005-05:00

Perhaps, with postpartum hormones a swirling, I'm a little more emotional than usual. Maybe, because our recent delivery of Keturah was a little scary with a partial placental abrubtion, I'm more sensitive to the preciousness of life. Or maybe it's just that I am so tired of the trite platitudes that women use to justify their decision to kill their babies with Down syndrome. I'm tired of not being able to respond to the ill-informed reasons they give. I'm tired of reacting with compassion and "tolerance". I'm tired of reading that I'm the selfish one for giving my baby life. I'm tired of hearing that my child is "suffering" when clearly he is not.

Yesterday, I read a comment by a mom who terminated her pregnancy for T21. She wrote that her little boy is "at peace". Well, guess what?!? My little boy with T21 is at peace, too! He's at peace when he's sleeping safe and secure in his crib. He's at peace when he's playing trucks and cars with his brothers or wrestling with his dad.
He's at peace when he "holds me" at the end of a long day. He's at peace when he's coloring pictures at the dining room table or eating his favorite dessert. He's at peace as he embraces life at full-throttle. He's lived a full 21 months now, with many years to come...all of them "at peace".

We are blessed that he is not a memory, but a living, breathing, joyful little boy...at peace!

Just writing the above changes my heart to one of compassion for the women I started out so angry at. That's all they have...a memory of some kicks in the womb, a trip to a clinic or a hospital induction, all cloaked in a shroud of fear and grief. Of course they hold steadfast to the platitudes, it's all they have. To face the truth at this point, to have their carefully crafted lies fray even a little, would cause them unbearable pain.

My anger is misplaced. I wish I could see people through the eyes of my Jesus who grieves as I do for the injustices done to those little ones that He created, and yet, who loves and sees with compassion the women who caused the injustices to occur. It's difficult this despising of sin and setting aside pride to embrace the one who sins. I'm not very good at it when anger and bitterness seem so much more satisfying. Pointing the finger is easy; reaching out a hand is decidedly not. Maybe someday, I'll have the opportunity to do the latter. I hope that I'll be willing to do so.

Little Sister

2010-11-15T20:27:00.003-05:00

She's here! Eon became a big brother on November 12 with the arrival of little sister, Keturah Joy! We are all smitten and exhausted. :) She is a treasure and Eon is very sweet with her...so far.

Big brother soon...

2010-11-10T12:59:00.002-05:00

Eon will be a big brother in the next few days, not that he has any idea what's about to hit him. :) For a long time, he's been rubbing my belly and signing "baby", but I wasn't sure he really made a connection. Lately, though, he's been seeing a baby and calling my attention to it, then signing "baby" and rubbing my belly, so maybe he understands more than I think he does.

Over the weekend, I started having severe abdominal pain. While I was having contractions, it did not feel like labor and the pain was too high. I began to suspect a kidney stone (as I have some experience with that). After I was triaged at the hospital, a 2cm stone was found on the renal ultrasound. They decided to induce labor to get the baby out so they could deal with the stone. I was an emotional mess. I was completely unready to have her and was devastated by an induction. Once I wrapped my brain around it, they started Cervadil to soften the cervix and I started contracting regularly a few hours later. Unfortunately, the Cervadil came out when the nurse checked my progress and everything tapered off, so the doctor ordered pitocin.

Early Sunday morning, I got an epidural and my already low blood pressure plummeted. I was very sick and near passing out and it took some intervention to regulate it, again. Early afternoon, with pitocin cranked up and contractions coming 3 minutes apart and hard, my doctor came in and checked me...only to find I had not progressed at all. Baby girl was still flying high, I was undilated, and very posterior. He decided to call it quits...and send me home...after thirteen hours of labor! I did not even know that was a choice.

Monday, I felt like I'd been run over by a truck and was terrified to go through all of that again. Yesterday, I went to my OB appointment to find that I was dilated, much more anterior, and slightly effaced. Yay! Even though the kidney stone has receded back into the kidney, the plan is to induce again Friday morning. Now, I feel ready. :)

I hope Eon is, too.

Gotta be the Down syndrome

2010-11-05T14:23:00.003-04:00

This week has been filled with appointments. I will be 39 weeks pregnant, tomorrow, and while everyone else nests by cleaning, I, apparently, nest by taking kids to various appointments. Whew.

I have decided I am wearying of the medical "experts" that have me running to appointments just because Eon has Down syndrome. I have a very good idea of the potential things that can go wrong in little bodies with extra chromosomes. I am starting to resent the fact that I have just been jumping through hoops because "they" tell me to. For example, this week, we went to the audiologist. Why? Because he has Ds and is supposed to get his hearing checked every 6 months, according to the developmental pediatrician at the Ds clinic. I understand why this is the recommendation for the general Ds population. BUT, Eon has only had two ear infections his whole life (many less than his typical sibs at this age), he has great ear passages, he has never failed a hearing test or screen, and he shows no symptoms that would indicate a hearing problem. So, why did I take him? Because "they" told me to! I am feeling like such a sheep! And, I'm tired of the "experts" only seeing Down syndrome when they make these recommendations and not looking at Eon as an individual.

Yesterday, we had speech therapy. I love her. She has seen all my boys and she's great. But, I'm huge, pregnant, hormonal, and exhausted and she was not picking up on that at all. Eon was throwing toys. She asked me if he always did that. No, he doesn't. Just when he's in a tiff about something. I explained that he's been crabby for a week and a half and is getting some new teeth.

She responds with, "Well, not to scare you, but that stubborn streak is pretty common with kids who have Downs." Really?!? Straight to blaming it on Ds? Could we not problem solve that he's a toddler and being a grump? Could we not chalk it up to teething, or not sleeping well, or a cold? Nope. Gotta be Down syndrome! Sigh.

She also took it upon herself to ask if we intend to send him to preschool. I tried to deflect the question with a simple "I don't know, yet", but she wouldn't let it go and started trying to convince me how helpful it would be for him. Again, really?!? Now?!? I have 15-months until that's even an option. I'm having a baby in a week or two. Can't we just focus on the now for now? Yeesh.

Buddy Walk

2010-11-02T16:50:00.004-04:00

We had a great time on the Indianapolis Buddy Walk and were so blessed by our team of around 45 people! Wow. Here are some pics. I managed to waddle about 1/2 mile of the 2.6 mile walk, but it was fun to watch all the teams go by. It seemed to be a bigger turn-out than last year (which was estimated at 1500 people). As I was sitting and watching, though, I was struck by the number of people that were missing...because of all the women who choose to terminate the pregnancy after discovering their baby has Down syndrome. If only they had given their child a chance, they could've been walking with us, enjoying the day and bursting with pride over their child and the Ds community as a whole. Made me sad. Aside from my melancholy, it turned out to be a good day. Here are some pics of the overcast day.

So tired...and a little chilly.

We had a lot of kids walking with us (and this is not even all of them).

Dad (Shawn), Me, and Eon after the festivities were over and we were worn out.

The boy of the hour with oldest sister Michaela and blond brother Zak behind him.
Not real sure about Grandpa (who just got back into town after 5 months.
See the sea of orange "Simeon's Sidekicks" t-shirts? The walk is along the canal in downtown Indy.
Being held by Aunt Tonya...still not looking thrilled.
Assembling the team. The cute bald man in the middle is Shawn. :) Looking forward to next year!

Hope for the Future

2010-10-26T17:05:00.004-04:00

My friend, Heidi, has a 37yo. brother-in-law with Down syndrome (her husband, Jason's brother). Her in-laws only had the two boys, and Brian, the one with Ds, lives with his parents in another state.

She brought their kids to the Buddy Walk, last weekend, and started talking about Brian. She told me what a great uncle he is to their boys and what a blessing he is to her. Then she said, "I'm concerned about what happens when his parents pass on."

I was preparing myself to hear her talk about where they might end up placing him or what a burden it would be to care for him, given that they have three young boys, etc.

She pleasantly surprised me by announcing, "There's no question that he will live with us! He's family. I'm just hoping that maybe by then we'll have moved back to his home state so it won't be too much of a transition for him." She went on to express concern that he has a bit of OCD and she's worried that he'll have a difficult time adjusting to their family life.

She has very valid concerns, but what shocked me, given our culture, was that she just expected to take on the challenge! She was very adamant about their love and concern for Brian and how important he is to their family. And she's an in-law!!!

What a blessing! I hope and pray that my kids will find spouses that love their brother as much as they do, too! It just gave me another burst of hope for the future.

Youch! Here's a post with a necessary punch.

2010-10-23T19:55:00.002-04:00

Fellow blogging mom of many, including one with Down syndrome, Susanna, posted this on her blog the other day. I was, and still am, incredibly convicted. She is absolutely correct. I have no right to nurse an offense or even become offended in the first place. Words I will ponder for years to come.

Wordless Wednesday: PT Fun

2010-10-17T16:11:00.004-04:00

Fun at the pumpkin patch

2010-10-15T20:31:00.004-04:00

I'm 36 weeks pregnant, so we walk at about the same pace. :)
Hmmmm. Is this pumpkin bigger than my belly?
Why can't I get this one?

I liked the ones over there better.

Walking, and signing, and speaking, oh my!

2010-09-28T08:43:00.005-04:00

Eon has been taking steps for months, now, and I kept waiting for him to just "take off" walking. It's funny to me that it hasn't happened that way at all. Gradually, he has just taken more and more steps until, now, he walks more than he crawls. He's still unstable and falls a lot, but he's very determined and always just stands back up and keeps plugging along. Very cute! It still surprises me when I catch sight of him out of the corner of my eye and he's walking by. He'll be 20-months-old tomorrow, so it's a bit earlier than I expected, too.

I've mentioned before his tendency to use signs and words for awhile and then just kind of lose them. It drives me crazy. I've been encouraged by other parents that they will come back and we're finally seeing that it's true. He hasn't used the sign for "daddy" for the longest time. Sunday, he and I stayed home from church as he'd been vomiting in the middle of the night (fun, fun). He was sitting on my bed with me watching videos on the laptop, when he reached over and patted me to get my attention. Then, he signed, "Daddy", and looked to Shawn's side of the bed. I responded, "Daddy's at church." He then waved "bye-bye" and went back to watching his video. I was thrilled! That was the first abstract communication that we've had...something beyond his wants and needs.

He's starting to do that more and more. The other day, his 3yo brother, Zak, was yelling at him for wrecking up his train track. Eon scrunched up his face and signed, "Stop!" Cracked me up! The one that really made me laugh was when I was hollering up the stairs for Ben. Eon walked over the the baby gate, stretched his arm up the stairs, and started signing "Ben" real emphatically, like he was yelling for him, too! LOL!

He uses some words or word approximations, too. My favorite new one is "up". He used to just whisper the "p" sound for that. Now, he loudly says, "glup-a-glup-a-glup-a" when he wants up. I don't know if that's what he thinks we sound like, but I think it's too cute.

Community

2010-09-24T21:33:00.002-04:00

I've been thinking a lot about community, lately. Our Buddy Walk for Down syndrome is coming up in a month. I really want to have a big team. I have visions of a mass of Simeon's Sidekicks all in matching t-shirts smiling and enjoying the day together. I was very disappointed when I learned of a few scheduling conflicts that day which could (and probably will) impact the size of our team...like, over-the-top disappointed.

I had to do some soul-searching to figure out why this is so important to me. There is the usual (and acceptable) desire to expose more people to the beauty of Down syndrome. There's the desire to get more people to advocate for our kids. And then there is the desire to have more people enter our world, to really see what our life has come to be about.

I have to be honest with myself and admit that part of it is this intense need to have Eon be beyond accepted and actually celebrated...to be seen and known for who he really is. I'm sure there is a selfish need for me to be accepted, too.

But, I want to go back to my "have more people enter our world" reason. Our world. I want to invite people into our world, but I realize that I am very reluctant to enter theirs. Other people in our circle have walks for things that are important to them, but I never make an effort to participate. They have children with various diagnoses that I have never bothered to learn much about. Their kids are involved in all kinds of activities that I've never shown an interest in.

My friend, Nicki, is my new hero. She brought her kids to the Buddy Walk with us last year (When we totally misnamed our team, Simeon's Trailblazers, only to be so far behind we had to take a shortcut to catch up). This year, she was asking me when the Buddy Walk was a few months ago to make sure she got it on her calendar and now, she has her own fundraising page for it. I have been tremendously blessed and humbled by her enthusiasm.

Nicki has a huge sense of community that I am lacking. When the youth at church have any kind of game or performance, she makes an effort to be there. This inclination to look beyond "her world" has really caught my attention. What better way to foster community than to go beyond inviting people to join my world and attempt to join theirs, too?

I'm learning much from her. The other day on facebook, a mutual friend posted that her young son didn't get the part in the Christmas play he wanted and was disappointed, even though he still got a part. My thought was, "Oh, bummer." Nicki responded, "When and where? Because our family would love to be there." Because of her inspiration, I echoed the sentiment and am looking forward to it.

I do hope people will join our team. I'm sure it will be a great day! But I am also looking for ways to enter the world of those around me.

The Future

2010-09-18T13:08:00.004-04:00

As a busy mom of many, I have many preferences I don't often indulge in. For example, I prefer gourmet coffee and cheesecake at a quiet place with leather couches, but I usually end up with chocolate softserve at the walk-up place near the creek the kids love. I prefer downtown hotels with 5-star amenities, but often succumb to the great outdoors in our tiny camper. I prefer live theater and concerts, but am often found at the $1 movie place with the sticky floor watching the not-so-latest kid flick.

For most moms, substituting kid-friendly entertainment for our own preferences is just part of being a mom. Most moms know that this season of life is only temporary. Someday, their nest will be empty and they can return to the things they enjoy. They may long for the day when quiet coffee and theater tickets are the norm, but they know it's coming.

The moms of kids with special needs have no such assurance. While we are doing everything we can to ensure our child's future independence, we know that there are no guarantees. Our nests may never empty. We are possibly on a lifelong parenting journey without an earthly end.

The more I think about this, the less certain I am that it's a negative thing. I've grown to really like chocolate softserve, $1 movies, and (gasp!) even camping! But more than that is the complete realization that my life is not my own. As a follower of Christ, I have given up those rights. Any plans I have for the future are just a vapor and can vanish at any moment. My desire should be to simply do what He's placed right in front of me to do.

I have always struggled with what I call "when we, then we". For example, when we have this baby, then we can start the new housekeeping plan. When we have mostly older kids, then we can adopt. When we have an empty nest, then we can travel more. Do you see how this can be a trap? Always longing for the future, but never quite content in the here and now?

Having Eon in our lives is forcing me to hold my plans more loosely, to look to the future with anticipation instead of certainty, and to enjoy my reality as it is right now. It may not be cheesecake and coffee, but I'm making the most of it!

Deciding Not to Screen for Down Syndrome

2010-09-15T16:20:00.000-04:00

Deciding Not to Screen for Down Syndrome
This is an excellent article that succinctly explains my reasons for declining genetic screenings this pregnancy. Unfortunately, the comments took their predictable route. Sigh. I've blogged about this phenomenon before. It's disheartening to see how ignorant and angry the world continues to be.

Preschool?

2010-09-08T16:14:00.004-04:00

I try not to buck the system too much, really. I am a homeschool mom, though, so that is an area where we are not following the norm. Of course, having seven kids isn't exactly normal, either. For that matter, neither is encouraging one's husband to leave his steady job of 15 years with great benefits to start his own business. Hmmmmm. Maybe I am a bit of a rebel.

Anyway, reading so many blogs and so many posts about sending our 3-year-olds to preschool, many of them on a bus, has caused me to pause and ponder.

Is this really the best thing for Eon?

Who decided that it is? I think I need to see some research to back it up. I know that it will be easier to get him therapies if he is in preschool and I've heard some wonderful things about the program in our area, but, I've heard those things from people who expect all their children to attend public school, anyway.

In all the posts and musings about this, the options revolve around which type of preschool, how many days, or what type of transportation to utilize. I have not read anyone question even attending preschool.

I suppose, since he's only 19-months, I have some time to explore this issue, but time seems to be flying by at an alarming rate. If anyone has any research or input on this, I would love to hear it!

So now I wonder...

2010-08-31T20:19:00.002-04:00

When we found out we were pregnant this time around, there was no question that we would skip the prenatal screenings. We knew that anything screened for would be visible on our level 2 ultrasound, except Down syndrome. There were no markers for Down syndrome on the ultrasound and everything measured exactly as it should. Plenty of babies with Down syndrome are born without any markers on the level 2 ultrasound, so that does not mean that she is not sporting an extra chromosome, but odds are good that she has the usual number.

I had to wrap my brain around the possibility of a typical baby this time around. I admit that Eon, with his phenomenal sleeping schedule and laid back personality, completely spoiled us. I remember well the infancies of my typical kids with their unexplained crying jags and demanding personalities. Seems like a lot of work to me.

As a family, we enjoy Eon so much and delight in everything that he is. I worry now that we will not have the same bond with his little sister, that we will miss all she has to offer because of our complete devotion to her brother. My head knows that it is unfounded, but my heart is not so easily convinced.

So I wonder, will she have Down syndrome, too? Will she be healthy? Will we instantly bond? Will we accept her and delight in who she is? Time will tell, but these are the things I pray about.

Rolling Around In My Head: The People Who 'ARE'

2010-08-23T18:37:00.001-04:00

Rolling Around In My Head: The People Who 'ARE': "It's in the press again. I search to find out the context of the word. I see debates all over the web, people bemoaning the 'politically c..."

I found this post to be a must-read...humbling and brilliant. Please, please...take the time.

SMO Guilt

2010-08-18T12:09:00.003-04:00

SMOs (small ankle braces designed to provide support and proprioceptive input) have been the bane of my existence for several months. My life is crazy. It is summer and all the kids stay barefoot, donning flip-flops only if we leave the house. Putting socks, tennis shoes, and SMOs on Eon first thing in the morning and again after nap time was not working for me. I kept trying to find a way to make it work, but mostly I just lived with nagging guilt that he wasn't wearing them as much as he should.

Then, I began to notice that, without them, he was standing independently and even taking steps. With them, he would barely pull to stand and cruise. He spent a great deal of time pulling at the straps of his shoes trying to take them off. I felt like they were interfering with his independence and mobility.

Remembering that the PT was uncertain initially if he even needed them, I decided to approach her and confess my negligence in this area. When she showed up last week, he was barefoot. I told her all I just shared with you. She agreed with me that we don't want to slow him down and that we can add them back in once ambulation becomes his primary mode of mobility. I was thrilled and amazingly relieved! It's the first time I've bucked the system, so to speak. (Well, except for when I d/c'd OT, but I am an OT, so that shouldn't count...right?)

This week, we met at the park for PT and she was amazed with all he could do. He climbed the stairs and she worked with him on coming down (not so great at that, yet:), he climbed the slide, took a step or two in the mulch, stood independently for over a minute several times, and took several steps in a row on the pavement. He was wearing his shoes, but no SMOs. I think he enjoyed showing off! He also learned the word "hot" from where the sun was shining on the equipment and used it repeatedly! He did so much more at the park that we're meeting there next week, too.

Oh! She was letting him rest on her lap in the shade for a minute and he started signing "play". That's the first time he's used that sign without prompting. That was our added bonus for the day! :)

God Wink

2010-08-09T12:00:00.002-04:00

Last week, I read a post by Erin about a "God wink" she experienced, a moment that God ordained to show her she's not alone and it's going to be okay. I read her post with a heavy heart. I was feeling down about Down syndrome and sinking into a giant pity party.

Later that day, I took the kidlets to a McDonalds with a playland. Before we left, I struggled to put Eon's SMOs (ankle braces) and shoes on as he squirmed and kicked. Once there, I got him a cup of water (unmeasured) and tried to guess how much thickener to mix it with to prevent aspiration. I've learned that he does better eating his cheeseburger if I just offer it to him to take bites from, versus cutting it up. It takes longer, though, so the other kids ran off to play.

As we sat there, I looked around at the other families. Then I saw her. She was about 2 1/2, but I'm purely guessing at that because she was tiny. She had soft blond hair and cute little glasses. Her mom was holding her rather awkwardly and feeding her lunch...a jar of stage 2 baby food. It was obvious that she had cerebral palsy and her limitations were significant. Her hair was rubbed off on the back of her head like a baby's from lying or semi-sitting in a stroller.

I pondered the scene for awhile. I have no doubt that the mom delights in her daughter every bit as much as I delight in Eon. Her three older siblings obviously adored her, too. Yet, I couldn't help but realize that this mom has significantly more work, appointments, and uncertainty in her life with her daughter, than I do with Eon. At this point, Eon was climbing through the playland with Ellie close on his heels. He was shrieking with laughter as he tried to stay out of her reach. The little girl was smiling, too, as her siblings ran up to kiss and tickle her and include her in their play.

Suddenly, my perspective was changed. I felt grateful. Not because I don't have that woman's life, but because I get to have mine...the one that was chosen for me.

On the way home, I realized that God had winked at me, too.

He's on to something!

2010-08-05T15:42:00.003-04:00

A few weeks ago, I wrote a post entitled "I See Down Syndrome". It has always baffled me that other moms seem to forget about it in their children, but I never do. A few days ago, Faith's mom, Stephanie, wrote a great post entitled "Sometimes I Forget". I admit to feeling a tad jealous of her after reading it. I read it to my husband and he agreed with Stephanie.

"I hardly think about it and when I do, I'm almost surprised to realize he has Down syndrome," he said.

Really?!? What is wrong with me?

Then Shawn told me he thinks it's because of my medical background. I'm an OT. It's what I do, but it's also part of who I am. He pointed out that I've always been aware of my friends' kids' development. I'm the one who "diagnoses" kids when I work in the church nursery. I'm the one who isn't afraid to recommend early intervention to a mom when I notice her child is lagging behind. It's just what I do. I've been trained to "see" these things.

He seemed to think that it's no different from him, as a professional handyman, noticing needed house repairs when we visit someone. (Hmmmm. That doesn't seem to translate to our own house...;)

I think he's on to something! After starting to question my acceptance of Ds and even Eon himself, I am breathing a deep sigh of relief. Maybe I'm not as warped as I thought!

Odds and Ends

2010-07-31T09:59:00.002-04:00

We had our first Down syndrome play date, yesterday! I was so excited to get to spend time with Laura and her adorable little girl, Lilly! They are former neighbors of our pastor's family and his wife, Julie, graciously invited us all over so we could connect. Lilly turned 2yo yesterday, and is just so cute! She's been walking since she was 14 mos. and is so fast. She's also the busiest little thing I've ever seen! I think she opened every available drawer and cabinet. I jokingly told Eon that I'm sorry I ever pushed for him to start walking! LOL!

Speaking of walking, our little man turned 18 mos. on Thursday and celebrated the day by taking his first steps! After standing independently in the middle of the room for months, we were all excited when he took it a "step further", so to speak. Unfortunately, I started clapping and cheering just as he fell, so he decided that falling was the thing we were celebrating. For the rest of the evening, he proceeded to stand up, fall, and clap for himself! LOL! Timing is everything.

I've had several people ask how the pregnancy is going. I'm 25 weeks and feeling okay. We skipped all screenings except the level 2 u/s this time around. My reasoning was that of all the things they screen for (with the exception of CF), T21 is the only thing that doesn't have definitive markers readily seen on a level 2 ultrasound. We are not worried about this little one having Down syndrome, so it really made no sense to me to go through the screenings when anything else would be found on the u/s. That being said, I went into that u/s with much fear. I was terrified that they would find something fatal! They did not. :) Everything looked great and within normal limits. I was very relieved. I was quite excited to discover that our tie breaker is a little girl, too! After three boys, I am very ready for pink again. :)

Some pregnancies are easier than others and this is not one of the easy ones. I've experienced near fainting due to blood pressure dips, almost constant itching that has prompted some bloodwork for possible liver issues, and a strained back that left me bedridden for a few days. I'm thankful to know that this is just a temporary inconvenience for an eternal blessing, though! We are anxious to meet this little cutie and see what she brings to the table. :)

I see Down syndrome

2010-07-26T17:19:00.000-04:00

When Eon was a few weeks old, I asked a question on Babycenter's Ds board: "When will I stop "seeing" Down syndrome?" Most of the responses were among the vein of "when his personality develops", "when he starts smiling", etc. I noticed Down syndrome every time I looked at him. I think I was looking for it in his features; some indication that it was actually part of him.

Our son, Zak, has blond hair. It is really, really, really blond. I see it every time
I look at him. I can tell when he's been in the sun because it practically glows. I notice if it seems a tad long or if Daddy missed a spot when he buzzed him. It is very much a part of his cool "surfer-dude" personality and I love it about him.

Likewise, I see Down syndrome every time I look at Eon. I can tell when he's tired because his features seem more pronounced. I look at him with wonder that he can look so much like his siblings, and yet, also like thousands of kids across the planet that have Down syndrome, too. I look at him with joy that he is special and different. Sometimes, I look at him with concern and wonder if there is more I should be doing for him. But, I never look at him and fail to see Down syndrome. It is part of his charm and I love it about him.

His cheering section

2010-07-23T08:56:00.003-04:00

Eon has been standing from the floor independently for awhile. He's even picking things up from the floor while standing and unfastening his shoes. However, he only does it at home. I think he's too busy checking out the sights when we go somewhere.

That changed at VBS the other night, however. He was crawling around the church foyer playing with some kids while I was talking to some friends. I heard someone say, "Wow! Look at Eon." I glanced over and saw him standing in the middle of the room with a big grin on his face. Several other people noticed and exclaimed over him. I even had a quite a few people tell me about it later. They were all grinning and obviously excited for him.

It occurred to me that all of his typical peers started walking in the last few months and no one seemed to notice. It was a complete non-event to everyone except the parents. Eon stands once in public and causes quite a stir. Everyone notices and cheers.

We are blessed to be part of such a caring group of people who love our son and celebrate his abilities with us!

My chip

2010-07-22T18:55:00.002-04:00

I learned something this week. I have a chip on my shoulder. When it comes to Down syndrome, I am starting to expect the worst from people. It started a few weeks ago when I was discussing Eon's transition into the toddler room at church with the coordinator, who is also a good friend. I thought it would be helpful to have our oldest daughters take turns being in there with him to assist him if needed (mostly because he doesn't do well without "his people" around).

Thinking aloud, my friend thought through potential issues with this arrangement and I became ridiculously defensive. I erroneously assumed it was turning into a fight for my son's "rights" and became loaded for bear. Turned out to be a complete non-issue.

This week, I'm working in the nursery for VBS (vacation Bible school). There is a petite little girl in there who is 2yo. Eon tends to crawl like a boy on a mission with his head down and really fast. The first night, he almost ran into the little girl and she freaked. From then on, she'd whimper when he got too close and point him out when he made too much noise. My assumption was that she was scared of him because he's different. It made me sad.

Fast forward to the next night. A typical little girl, Eon's age, got too close to the first girl and she freaked again. After that, anytime that girl got too close, she whimpered. She forgot all about her fear of Eon. I realized I just assumed the problem was Down syndrome, not that the little girl has space issues.

I'm the one with issues. I have to lose this attitude I've begun to carry around! There is nothing wrong with being an advocate, but not to the point that I alienate those around us. What does that communicate to people, if I'm constantly expecting them to treat him differently? I think it just showcases his differences and certainly doesn't convey the intended message that he's more alike than different.

The Day is Coming

2010-07-08T20:32:00.003-04:00

I have not been upset or saddened by Eon's developmental delays. In fact, I've relished the extra time we have to enjoy all his stages and phases. I thought I was enjoying them because he was to be our last, but the knowledge that his baby sister will be joining us in November hasn't changed anything. Unfortunately, he seems to be growing up at an alarming rate.

I find myself in near panic attacks about how fast he's growing. I finally realized that I want to keep him little forever and why I feel that way.

He gets attention where ever we go. It's only positive attention at this stage. People acknowledge his engaging personality and comment on how cute he is. Even when he's being shy and stubborn, people smile at him.

Unfortunately, I know the day is coming when he will continue to attract attention, but it will be because he's different, not because he's cute. My heart breaks to think of that day. The positive attention will invariably turn negative when he loses his childhood charm. We live in an ugly world. I'm certain that he will still receive some smiles from experienced or kind-hearted people, but other people will look away, uncomfortable by his presence. Some will stare and others may say hateful things.

What he will not have the luxury of is anonymity. He will not be unnoticed.

I've experienced that a little in the last few years. We have a large family. If we go somewhere together, people notice. I've learned to plant a smile on my face and let them stare (and count). If everyone looks cute and is well-behaved, I enjoy the extra attention. If we're having a "Beverly Hillbillies" kind of day, not so much.

When I want my anonymity back, I go somewhere alone. If Eon wants his, he'll have no recourse.

And so, I want to snuggle him and hold him close. I want to listen to him giggle as I tickle him and raspberry his fat belly. I want him to stay small and safe, shielded by his cuteness and protected from that day.

Processing

2010-07-08T20:07:00.004-04:00

Simeon is 17 months-old and I am just starting to see some of the processing differences in him. Rather than just being delayed or behind on milestones, he takes a little longer than his typical peers to process information. An example of this is his tendency to take a nose dive off the bed if not watched closely. He stands and cruises independently, but he has yet to figure out how to safely get off the bed. I've been providing verbal, visual, and tactile cues for this task for months, but he insists that head first is the only way to fall....and fall he does on occasion. Thankfully, other than a bruise or two, he has escaped these incidences relatively unharmed.

Even with his slower processing, he often surprises me. I've been playing the "where's your nose" game with him for a few weeks, to no avail. He simply looks at me blankly whenever I ask. But, the other day, I asked a different question: "Where's your head?" Immediately, he smiled really big and patted his head. I have no idea where he learned that. Silly mom's just been asking the wrong question all this time! :)

Excellent article on "More"

2010-07-05T17:24:00.004-04:00

I found this article to be very helpful (in an abstract sort of way) in understanding intellectual disability.

More

Interested to see what our "more" looks like as Eon gets older. I could relate to much of what she had to say in regards to our other son without intellectual disability. Sometimes our world is difficult to describe to those around us.

Water Baby

2010-07-03T15:01:00.003-04:00

Eon had a great time playing in the pool on our vacation last week!

He's not the only one!

2010-06-09T15:25:00.004-04:00

Shawn and I decided to join a nearby gym (nothing like deciding to finally exercise while pregnant). As we were touring, we dropped the kids off in the babysitting area. When I scanned the room, I was so excited to see another little boy about Eon's age with Down syndrome. He was so cute! I asked the attendant about him and she said she thinks he's the youngest of four and that he's 18 mos.

Later, when we picked the kids up, she told me that she pointed me out to the mom who didn't want to interrupt when we were signing up. I hope she sees me there, again, and "makes contact". :) I still think we need a secret handshake or something. Ellie told me that when she put Eon down, he crawled right over to him and they played together.

I know it's silly to get so excited over a chance encounter, but I just never see kids his age with Ds unless we are at a Ds event. It was a momentous occasion. :) I think the attendant was as excited about it as I was.

At least with Down syndrome...

2010-06-01T14:45:00.000-04:00

As this blog is primarily about our life with Simeon, I don't talk much about our other kids. But it's another kid of mine that prompted this post. Ben is 4 (will be 5 in August). He is tall and lanky with sandy colored hair and a dimple in his left cheek. He is my sweet, first born son. The first time he brought me a bouquet of dandelions, I thought my heart would melt right there. I am forever blessed to be his mom.

Ben is also my most challenging child. His was my most difficult birth, most difficult postpartum period (complete with postpartum depression), most difficult nursing relationship, etc., so it makes sense that he is my most difficult child. There is some trauma in his history and I am certain that many of his behaviors stem from that.

He has mild speech apraxia, some sensory issues, some vague learning issues, and who knows what else. We have an appointment with a psychologist in July to try to identify his issues and get the help we need. In the meantime, he has outbursts...moments of rage in which he seems to lose all control. He screams, kicks, throws things, bites, pinches, etc. It is exhausting for both of us and I am at a loss as to how to help him. Some days, I parent him with love, grace, and understanding; some days, with impatience, frustration, and anger. Typical parenting doesn't work for him.

I find it so ironic that mothers are devastated to get the diagnosis of Down syndrome for their baby, when I've found that typically chromosomed kids can be so much more challenging. It makes me so much more aware of the benefits of a Down syndrome diagnosis:

At least with Down syndrome, we have an entire community to ask questions of. Someone in my network somewhere will have advice for me when a new situation with Eon pops up.
At least with Down syndrome, we get an inkling of some of the challenges we may face at or before birth.
At least with Down syndrome, people visually recognize that this is a child with special needs. When your typical looking child has a meltdown in the store, people blame you and your poor parenting. (If you happen to have a lot of children, they may blame that, too.)
At least with Down syndrome, there is the knowledge that this child is this way by design and not some failure on your part.

As with all of our children, I am grateful that I can rely on the wisdom of God in parenting Ben. He is a handful, but he is worth it.

The teenie-weenie

2010-05-30T16:32:00.002-04:00

Just a warning, but this post contains way too much information. I'm hoping some of you other moms of boys with Ds can help me. My little guy has a teenie-weenie turtle penis. It is small and constantly hidden by a fat pad in his groin. I'm concerned that when we eventually start potty training, it is going to be a big problem. Plus, it's kind of awkward that it doesn't resemble his brothers. They, at 4 and 3, are totally into all things gross and private and have taken note that Eon's is just not right.

I have repeatedly asked our beloved pediatrician about it and he basically blows me off every time. (I love the man, but he has a stubborn streak.) Does anyone have any experience with this? Which doctor should I address this with? He has an appointment at the Ds clinic in July and an appointment with his endocrinologist in the fall.

The well-meaning comment

2010-05-20T17:30:00.003-04:00

At only 15 mos., Eon has yet to face ridicule or discrimination because of Down syndrome. I don't doubt those moments will come, but I try not to dwell on them. I do know other moms have had to put up with negativity and insensitive comments related to their little one's diagnosis, but we have escaped relatively unscathed.

Shawn thinks it's because people are afraid of me. That might be the case. I have a tendency to speak my mind. I get it from my mom, although she is 6' tall and slightly more intimidating.

What does often catch me off guard is when some well-meaning person decides to "encourage" me by saying some inane thing about Down syndrome or children with special needs. Recently, a gentleman who had been watching Eon really get into the worship service at church, approached me to tell me that even though Eon is not the "original design", he is still God's creation or something equally ridiculous.

Honestly, it kind of ticked me off. It was like he had just had the revelation that my son is worthy of life and felt the need to tell me. And, he said it like I should be delighted with this new tidbit of information. Really?!? Do people think I sit around depressed because I have this beautiful toddler who has an extra chromosome? How many times do I have to testify publicly that Down syndrome has blessed our lives, that Eon is exactly who God made him to be, that we couldn't be more in love with or prouder of our son?

Of all the experiences like this (and they always happen from church people...why is that?), my favorite was the lady who told us soon after he was born, "God told me to tell you that he does have an extra chromosome...an extra chromosome of love!" Still cracks us up and we say that all the time around here just for a giggle. :)

Goodness. If I get this worked up over well-meaning comments, how will I react when someone really is a jerk? Let's just chalk it up to pregnancy hormones, shall we? :)

MIA

2010-05-10T15:17:00.002-04:00

I have been MIA in bloggy land for the last several weeks. It's probably hard to imagine since I have birthed six children, but I am not a fan of pregnancy. Those early weeks are difficult on everyone in the family. So, I have spent much of my time away hugging the toilet and fighting off the frequent migraines that accompany this blessed condition. I wish, at 13 weeks, I could assure you that I am well past that, but I can't. I keep thinking I should be feeling better and I am, but still not great.

I was truly spoiled in my pregnancy with Eon. I felt great the whole time. After going overdue with all of his siblings, I was amazed and blessed when he even gave me the gift of showing up a week early. He's such a great kid! :)

Speaking of Eon, one of my biggest fears for him is that he will be nonverbal. It is really important to me that he become an effective communicator. Probably because this family is full of gabbers and I want him to fit in, I'm worried that speech will never come for him. His oldest brother, Ben, has mild speech apraxia and two of his other siblings also needed EI for speech therapy, so it's kind of at the front of my brain. His speech therapist remains unconcerned and I wish I could adopt her attitude.

Because of that, whenever he learns a new sign, I am thrilled! But, right now, I am even more thrilled because, at 15 mos., he has added two spoken words to his "momma" and "dada" repertoire! He started signing "dog" a while ago and then started saying, "goggie" with it a few weeks ago. His newest addition is "book" which sounds more like "ook". He is very consistent with both of them. Earlier, he was out of my line of sight, but I heard him repeating "ook, ook" and I knew he must be looking at one. Sure enough, he had found his sister's book of sea creatures.

I know he will be behind in language development, but it gives me hope that one day, we will have meaningful conversations with this kid!

In other news, we should be receiving his SMOs early next week. The PT is confident that he will be walking behind a push toy shortly. I'm unconvinced, but we'll see. He is starting to cruise around furniture, but it's a little awkward and slow. He's also starting to let go after pulling up to stand and pause in midair before crashing to his diapered bottom. Makes me cringe, but he thinks it's great fun.

We have taught him to rely on a bedtime routine that is just ridiculous and it's beyond time to teach him to fall asleep in his crib, but I don't have the stomach for it. Isn't that sad? Any words of wisdom or encouragement on that front would be greatly appreciated.

Now, it's time to sign off here so I can spend some time catching up on the many blogs/lives I have been neglecting in my hiatus.

SURPRISE!

2010-04-09T14:54:00.002-04:00

Shortly after Eon was born, I discovered Reece's Rainbow and it became my passion to see those precious children with Down syndrome rescued from almost certain death. It was my hope that, one day, we would join the amazing families that are bringing them home, and adopt one of our own. We were moving to that end. I felt as if both the passion and the desire were from God. I was excited that we would finally do something "big" for Him.

So, imagine my surprise when I discovered I was pregnant. "This cannot be happening," I thought. We had the perfect, albeit large, package - three bio girls and three bio boys. The tie-breaker was supposed to be a chosen, adopted child. Honestly, six seems nice and compact to me. Seven just seems Duggar-kind of crazy! I sobbed the entire day after seeing the pink line. This was not the plan!

I wallowed in misery and disbelief for days. I'm not a big fan of pregnancy. For the previous seven months, I had not been pregnant or nursing for the first time in almost seven years. I discovered that I like myself without all those swirling hormones. So certain was I that we were finished with infancy, I discarded all things infant-related.

I remember telling a friend, "It is so hard for me when I'm all set to zig and God says, 'Zag'."

A few weeks ago at church our pastor was talking about following Jesus. He said that we need to learn to follow Jesus before we can truly serve Him....that sometimes we jump in and start serving God, and that it's possible to do that without actually following Jesus.

And then it hit me: I was irritated with God for interrupting my plans to serve Him.

I realized that I had a decision to make. I could either continue in my misery and believe the lie that this pregnancy was a mistake. OR I could choose to follow Jesus. I could believe the truth that this child was chosen by God, that his/her days were planned at the creation of the world, and that he/she is a blessing.

I chose the latter, and He's slowly changing my heart.

Someday, maybe we will adopt. But for now, we are rejoicing in new life, swallowing our pride, and looking Duggar-kind of crazy. :)

2010-04-03T20:37:00.000-04:00

EDD: 11/13/10

Doubt

2010-03-26T17:14:00.001-04:00

doubt

(It starts as a whisper, a tiny niggling in the back of my brain.)

Birth defect......Genetic accident........Tragedy......Disease

Doubt

(A little louder now, more insistent, it pushes forward toward the front of my conscious mind.)

Eon just got over being sick. He was sicker than the rest of us......again. Sometimes, I think he's doing phenomenally well, but, sometimes, I notice things like him staring at his hands in endless fascination or seeming not to recognize his own name and I wonder. Is he fully there? How much is he really getting? How far can he go? What is his purpose?

Sicker.......Staring........Purpose

Doubt

(Starting to sink a little into the abyss of fear.)

Inadequate.......Not doing......Overwhelming.......Enough

DOUBT

("Help me, Lord," I whisper.)

(and then...)

For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be. Psalm 139:13-16

So God created man in his own image, in the image of God he created him; Genesis 1:27

You created......Wonderfully made.........Image of God

truth

(Yes, he is fearfully and wonderfully made. He was created in your image. You planned his days long before he was born.)

Future.......Hope.......Purpose

Truth

(Of course! You, oh God, have plans and a purpose for both of us. How do I fail to see it sometimes?)

Strength......Grace......Power

TRUTH

(You are my source. You are my strength and my shield. I can do this through you and you alone. I am not strong enough, but I don't have to be. As always, you are.)

Blech!

2010-03-16T16:51:00.003-04:00

I have been MIA in blog land for the last week as we were attacked by a tummy bug. Attacked as in every. single. one. of. us. It started exactly a week ago with the 2yo and has run through the entire family. The worst part is that it lasted for days for each person, with the exception of Ben. We joke that Ben has a compulsion for hand sanitizer but, as he is the only one who was down for a mere 24 hours, I think maybe he's onto something there. :)

Eon, though started vomiting Thursday night, seemed to get better by Sunday, was given formula and started vomiting again. The nurse at the ped's office had told me it was safe to reintroduce formula after 24hrs from the last episode, as long as he was keeping down other liquids and food...which he was. Yesterday, he slept most of the day, just waking up to whine and drink pedialyte. :( I finally gave him Tylenol and some stage 2 pears in the evening and he was much happier.

After sleeping fourteen hours last night, he was his old self this morning! I was so excited. He seemed hungry and, since it had been 36 hours since his last vomiting episode, I gave him formula. DOH! An hour and a half later, he started with projectile vomiting AGAIN! Ugh. So we're back to applesauce-thickened Pedialyte today. We were on our way to the Dollar Tree, so I'm glad we didn't make it out the door! Can you imagine me at the store with six kids, one of them projectile vomiting in the aisle? Ack!

My biggest concern is that he might be aspirating when he vomits. :( He's sounding very gurgly afterward and Shawn thinks his breathing looks a tad labored this afternoon. We're watching him closely.

I have not yet found a good way to catch projectile vomit from a 13 month-old, except with whatever clothing I happen to be wearing. :) Sunday, I knew it was coming so I held a bowl up to him. It missed the bowl completely and shot all over me! Hilarious! (I even found it funny at the time!) I've done more laundry in the last week than I have in the last six months. Shawn says the last time we had clean sheets every day.....we had to tip the maid.

The Nursery

2010-03-07T16:16:00.002-05:00

Eon is not a fan of the church nursery. He has some seperation anxiety and spending the morning with a bunch of strange adults, and even stranger kids, is just not his cup of apple juice. Maybe the problem is that we had a run on girls in our church around the time Eon was born and he is the only boy that's nursery age. Today our friend, Doug, was working in the nursery, so I thought we'd give it a whirl. My other two boys generally hated the nursery, too, but they loved Doug.

Actually, he did last a record amount of time (for him) in there this morning. Apparently, I forgot to mention to Doug's wife, Teresa, that Eon is now crawling and pulling up to stand. Eon, being intimidated by all those girls, I'm sure, just sat and played with toys for almost an hour without moving. Toward the end of the hour, he started to fuss a bit and Teresa was concerned that his back was getting tired. Thinking he couldn't reposition himself, she laid him down. He promptly flipped over and sat up. Hmmmm. Then Doug did the unthinkable. He put Eon in the exersaucer. I heard the reaction to that from my seat downstairs in the sanctuary.

After I went and rescued him, I decided that Eon must've been listening to his PT all those times when she disapproved of exersaucers for kids like him. :)

Simple

2010-03-05T16:24:00.006-05:00

I'm a simple girl. I have a simple belief system, a simple lifestyle, and a simple worldview. That's not to say that I'm simplistic, mind you, just uncomplicated.

I believe, for example, that those who are unwilling to accept challenges with a child, should not have unprotected sex. I don't understand saying, out of one side of your mouth, that people with Down syndrome are "more alike than different" and that your life with your child is "normal", and, out of the other side, that you will pursue IVF with embryo screening to make sure you don't get another one with Ds. It's ludicrous to me. It doesn't add up.

But, again, I'm a simple girl. Never could figure out the new math.

Wordless Wednesday ("borrowed" from a friend:)

2010-03-03T14:45:00.001-05:00

In Defense of Homeschooling

2010-03-02T12:43:00.006-05:00

Because of my last post, I feel the need to spend a few minutes defending homeschooling...only because I won't actually say any of this to the naysayers in real life.

Here are some of my answers to the questions that we get: "Aren't you worried about socialization?" The definition of socialization is: a continuing process whereby an individual acquires a personal identity and learns the norms, values, behavior, and social skills appropriate to his or her social position. Hmmm. I don't know about you, but I think I'd rather my 6yo learn norms, values, and behavior from me, instead of a roomful of other 6yos.

I think what they mean to say is "What about socializing?" The definition of socialize is: to associate or mingle sociably with others. I remember from my school days getting reprimanded for this very thing, but maybe school is different now and your supposed to talk in class? Anyway, my kids get plenty of opportunities for social interaction, and they are very good at it.

This actually brings up one of my favorite benefits of homeschooling. Kids are not relegated to interacting with same-age peers all day. They excel at relating to individuals of all ages and enjoy the company of adults, as well as children. My kids and their friends are not hung up on ages and grade levels of their friends. The older girls have a group of friends that range in age from 10-14 years. They are close with one another and the 10yo (my Ellie) and the 14yo are just as close as any other members of the group.

Speaking of Ellie, she tests at or just below grade level. Someone outside looking in might decide that she is the poster child for anti-homeschooling. However, we are, in fact, very proud of her success. Ellie has ADHD, dyslexia, dysgraphia, and probably a few learning issues that haven't been diagnosed. Because we homeschool, we have been able to teach her in an individualized way that capitalizes on her strengths while working to overcome her weaknesses. I am convinced that she would be much farther behind in a traditional school setting, and would most likely have very little self esteem. Instead, she is a very confident girl who loves to learn. It has been a struggle to get here, especially on the heels of her gifted older sister, but we've worked at finding just what works with her and are proud of her success.

A huge benefit to homeschooling is flexibility. We can schedule school around any event, even as simple as a sunny, 50-degree day (after months of teens and twenties) that just begged for us to venture out for a walk to the park today. Because we don't have crowd control issues and I only have a few students, we are able to accomplish the bulk of schooling in about 3-4 hours. That leaves a good deal of the day for chores and play. Last year at this time, Michaela was able to fly to the Everglades and spend three weeks with her grandparents learning about the ecosystem. Her grandfather, my dad, was a park ranger there. It was a wonderful adventure for her as she loves nature above just about everything.

Another pro is that I get to be with my kids all the time. That's also a con, too, depending on the day. :)

I'm often asked if I intend to homeschool Eon. I don't have an answer for that. It's so hard to imagine my baby as school age and, frankly, I'm just enjoying my time with him. We'll cross that bridge when we come to it, but my inclination is to say probably not...at least not initially.

We take it year by year, but I do intend to continue homeschooling through high school. We live in an area with a huge homeschooling population with tons of alternatives, sports, band, art classes, choir, etc. I'm intrigued by our university's online high school courses for college credit option, too.

We took this year off from our homeschool support group because of therapy conflicts. We are so excited about going back next year. I feel like we "went to ground" getting our bearings after Eon was born. It's nice to feel like we can begin to add in all the extras that help round our childrens' educational experience.

The Locals

2010-02-25T16:50:00.003-05:00

So, I went to the local Ds group a few weeks ago. I just took Ellie, 10, and Eon while dad stayed home with the rest...didn't want to overwhelm anyone. It was good. I'm not sure what I was expecting, but I didn't get it.

I think I was hopeful for this instant connection with the parents there. I've been spoiled by my blogging friends and online support group. I feel an instant connection with someone I've only communicated with through words on a page, but real life seldom measures up, I suppose. When I mentioned online support, I got blank looks. There also didn't seem to be a great deal of awareness about current hot topics...the r-word, the "cure", etc.

Honestly, I was disappointed.

The good news is that I went to the Mom's Night Out this week and loved it! It is more city-wide than the local group which is specifically for my side of town. Eon was the youngest represented, but it didn't matter. We were there just to have a good time. At the Mom's Night, I met a gal who has a son who's a year older than Eon and she lives pretty close to me, so that was good. I'm looking forward to getting to know her family better.

One of my beefs with the local group was that I felt instantly judged by the teachers that were present (there were a lot of them, it seemed) for our choice to homeschool our children. You know how it is when you are asked polite questions with a bite: "Where do you get your curriculum?" "Aren't you worried about socialization?" "You won't do it in high school will you?"
Sigh. This is our eigth year of homeschooling. These questions are not new to me. The truth is our kids are doing great, it works for us, and I don't really think it's anybody's business. It's not like I advertise it. On of the teacher-moms asked Ellie where she goes to school and it went south from there.

I was expecting to be admitted to the club on the basis of the extra chromsome that has blessed our family, only to feel excluded for another reason. When am I going to learn? We're a freak show, I tell ya.

Somehow, I doubt attending the next meeting with our six children in tow will help matters any, but we'll give it a whirl. :)

Why are we afraid of Down syndrome?

2010-02-19T11:41:00.002-05:00

I posted this on the amnio board on Babycenter.com today.

Of all the things that can go wrong with a child - cerebral palsy, cancer, emotional issues, teenage rebellion (drug use), etc. - why is it that Down syndrome seems to strike the most fear in our hearts?

I'm not being judgmental...I was right there, too. When Eon was born (odds were 1:20, declined amnio) and we were told within minutes of his birth that he had Ds, I was terrified! It felt like the air had been sucked from the room. The fear abated when I finally held him and looked into his sweet face, but I won't deny that it was my first response.

I think back to that, now that I know my fears were completely unfounded, and wonder if I would've been as afraid if it had been something else. I like to think that I would've been, but I don't know.

I don't think we're really afraid of actual Down syndrome, but rather the image of Ds that we have in our heads...the adult with Ds in our childhood neighborhood with the institutional hair cut and the garbled speech...or the kid with Down syndrome at our school coming out of his special ed class at lunch who always tried to hug us...or our great Aunt Sue's memory of her little "mongoloid" brother who was a burden on the family until he died at 25.

The reality is that Down syndrome doesn't look like that anymore. Early intervention and medical advances have changed the face of Down syndrome.

First, people with Down syndrome don't suffer. This is a group that embraces life and expects us to do the same. In the words of American Idol contestant Maddy Curtis (who has 4 brothers with Ds), "They see the world in color and we just see it in black and white."

Second, they are not a burden. Babies who are born with Ds today are expected to live independently as adults with only minor support. We are seeing young adults work meaningful jobs, attend college, and even marry.

Third, they are more alike than different. Kids with Ds will learn to do all the things typical kids do...walk, talk, read, attend school, fight with siblings, etc...it just may take them longer. They can be fully involved in sports, music, dance, karate, etc.

There are some health issues associated with T21. Most are minor and easily corrected and not every kid will have them. It's absolutely possible to have a perfectly healthy baby who also has Down syndrome. Heart issues are scary, but often don't need surgery and if they do, the surgery is considered routine and has a high success rate.

If we have other kids, we're often worried over how Ds will affect them. I know I did. Good news! Siblings of those with Ds have been shown to have higher levels of empathy, compassion, and tolerance than siblings of typical kids. Aren't those qualities we want our kids to have? Studies have also shown that parents of kids with Ds are actually more likely to stay married than those without.

It's not a cake walk. Parenting seldom is. All kids have challenges. With six kids, I know this better than anyone. With Ds, at least we get advance notice of what some of them may be.

Oh Jesus, come quickly.

2010-02-17T15:55:00.003-05:00

I just read a blog post about The Family Guy and Sarah Palin's response to the show's treatment of a character with Down syndrome. Palin seemed more upset over the fact that the character stated her "mom is the former governor of Alaska" than anything else. I don't know what I think of all of that, BUT, one of the commentors on the blog post wrote, "Oh Jesus, come quickly."

Something in my spirit just went "grrrrrrrrrr." Really?! We're calling for Jesus to come quickly because we're offended by something on television? Never mind that babies are being killed in utero, children with special needs are being abused and neglected to death, children are being trafficked into the sexual slave trade, and thousands of children are being orphaned and left to fend for themselves by AIDS in Africa. But, don't worry about all of that. We want a free pass out of here because someone might say something that will hurt our feelings.

Most people say that when they see evidence of evil or injustice in this world, and I can't help but think, "If this is the only evidence of evil or injustice we Christians in this country notice, then we need to get out more." There is something seriously wrong with a soul that wants to throw in the towel because of something they watched on FOX television.

How can we be so repulsively apathetic about social injustice in this world? When did we start to decide that it is all about us? Our comfort, our feelings, our lives? Where do we find that in Scripture?

I'm just sayin'.

Excellent post!

2010-02-16T20:27:00.002-05:00

My friend, Mer, wrote a beautiful post yesterday. I think you should read it!
Chase and More!: From Ok to Good

Feeling a little undone

2010-02-14T09:24:00.004-05:00

Other than a comment or two on some of my favorite blogs, I have pretty much stayed out of the r-word fray. For those of you not in the Ds community, the r-word is "retard" or "retarded". It is being used as slang to mean "stupid" and its use is increasing at an alarming rate, as far reaching as the White House and as close to home as extended family. Perhaps, in a future post, I will attempt to explain why those words are hurtful, but for now, I just want to vent.

I have an opportunity to speak to the youth of our church about this topic. Not wanting to come off as preachy and irrelevant, I wrote a post on my Christian homeschooling forum asking for advice. I gave a little background on why the word is hurtful and then asked for input on how I could present it.

I was completely unprepared for the backlash that ensued. I am so naive. I had no idea that I would have to defend my position on this board, of which I've been a member for seven years. These people were my online family. They congratulated us on the births of four of our children, including hearty congratulations for the birth of Eon, which I desperately needed. They prayed us through heart surgery and our overwhelming first year with him. I felt safe there.

Don't get me wrong. I'm not shy. I love a good debate...when I know it's coming. This just blindsided me.

You know what? I just went through and reread the entire thread to find quotes to post here and had a startling revelation: 33 people responded to my post. Of those, only 3 had anything negative to say. Thirty people were encouraging, defending, and supporting me. A few people even said that they had no idea those words were hurtful and they will stop using them!

And here I sat....in tears. So focused on the measly three, that I could not embrace the support I'd been given by the other thirty. Isn't that just like us? Only focusing on what's wrong and forgetting to celebrate what's right?

Shame on me.

Annual Evaluation

2010-02-12T08:50:00.002-05:00

Eon had his annual evaluation for First Steps, Indiana's version of early intervention. It's performed by a team that works outside of our county, not his current therapists. The OT that did his initial eval returned. It was so fun to see her again and she was so excited to see Eon. She raved and raved about how big and cute he is. I remember that when she did the initial, she brought me an article about three adults with Down syndrome that are doing really well and loving life. She also brought me a copy of "Welcome to Holland", which I'd seen before, but really appreciated.

I reminded her of that yesterday and told her what a blessing it was to receive those when the diagnosis was so fresh.

They asked a gazillion questions and put him through his paces. I've mentioned before how Eon just stares at people suspiciously if he doesn't know them, but he must be loosening up a bit, because he actually smiled at them and laughed at the DT. About halfway through, one of them mentioned that he was scoring too high to qualify for services and the other reminded her that he qualifies on diagnosis alone! I was very pleased that he is doing that well. The IFSP is in a few weeks, so we'll see how he really did, but I think he's doing great and that's really all that matters.

Deb, the OT, asked me if I've connected with anyone locally on the same journey. I expressed my frustration over the fact that I haven't. I told her that I'd looked on the DSI website and the southside support group isn't meeting now. She made a call and, low and behold, they are meeting and the next meeting is.......tonight! I am so excited! Eon and I will be in attendance while Dad stays home with the rest of the crew. (We decided not to overwhelm anyone on our first introduction:)

I'm so hopeful that I can find someone who has a child near the same age so Eon can have a buddy. I'll let you know how it goes.

Happy Birthday, to me!

2010-02-05T11:33:00.002-05:00

So, today I turn forty. Eon gave me a precious gift this morning. We bring him into bed with us every morning around six and he sleeps for another hour. Ben (4) and Zak (2) joined us around seven. I turned on PBS for them and rolled over. When I finally sat up, Eon was sitting up with his arm around Zak and was lightly patting him. After a minute or so, he leaned around him to see Zak's face and they shared the biggest grin! :)

It made my day!

2010-02-02T14:36:00.001-05:00

This is a post I wrote last year at this time. I read something recently that made me dredge it up again. Not specifically related to Down syndrome, though.

We don't like the term "anti-abortion". It's a term the media and those "prochoice" coined to avoid the term "prolife". And yet, for most of my life, anti-abortion was a better descriptor of who I was than prolife. Oh, I called myself prolife, and I had the republican voting record to back it up. I was against abortion. Isn't that what "prolife" means?

I don't think so. Can you call yourself prolife and make comments to a mom with a large family like "better you than me" or "don't you know what causes that?" Can you call yourself prolife and fail to offer sincere congratulations to a newly pregnant mom who already has a 5 month-old baby? Can you call yourself prolife and scorn the pregnant teen, more interested in how she found herself in that position than with the precious baby she's carrying in her womb? Can you call yourself prolife and honestly think that the struggling mom with four under the age of five has too many children...even if part of her struggles are financial? Can you be prolife and look at my new baby and see anything less than a perfect gift from God?

NO! The answer is emphatically no. See, prolife means to be for life, not just against abortion. We have to support life and be certain in our own minds that God is the author of life. Let me say that again. God is the author of life, regardless of the foolish choices or less than desirable circumstances surrounding it. He alone decides who should be. Every life that He creates is cause for celebration.

Pro means "for". Being truly prolife is much more difficult than being anti-abortion. Being against abortion means voting our conscience, emailing elected officials, speaking out against it, etc. Being for life involves so much more. It means loving people as Jesus does; hating the sin, but embracing the person. It means giving time, money, and support to those who are in the field ministering to someone with an unwanted pregnancy. It means stepping outside of ourselves and offering help to those who were brave enough to choose life. Most importantly, it means taking a long, hard look at ourselves and asking the Holy Spirit to reveal any thoughts, attitudes, or actions on our part that are not consistent with the Word of God regarding life.

That last step is the hardest. I know. There were many for me. But God is able to change the most ingrained paradigm for those who are willing to adopt His perspective. Choose life!

I would add that considering adoption of one of the 147 million orphans worldwide is an excellent place to start. If you are not in a position to do so, support someone who is!

Passion #3

2010-01-29T16:11:00.005-05:00

I have mulled this post over in my mind and written and rewritten it and I'm still at a loss as to how to communicate what my heart so desperately wants to say.

My third passion is to reduce the number of abortions based on Down syndrome. The current numbers stand at 90%. Ninety-percent of women, when shown by amnio or cvs to be carrying a baby with Down syndrome, choose abortion. Keeping in mind that there are many of us who, when faced with indicators of Ds, chose to forego further testing, it is still a staggering number.

I recently read someone's comment that those who choose testing are only those who would abort, anyway, however, I know that's not really accurate. I have read the stories of many, many women who swore going into the test that there was no way they would consider termination and yet, that's exactly what they did.

Why?

Fear mostly. Raw terror. Not having an actual baby to reassure them, they are terrified of the unknown. Most parents of kids with Ds that I have contact with propose that education and exposure are the answer. If we just show the world how wonderful our kids are, people will get it and the fear will go away. I'm sad to say that I don't buy that.

We are a society of convenience and ease. Our sole motivation is to make our lives easier. Easier is better in western civilization. Having a child with a "disability" is not considered easy and therefore, must be avoided.

Though not easier, our lives are better because of Eon. He is a joy and delight. I could repeat this until I was blue in the face, but most people will only take note of the extra appointments, his earlier heart surgery, and his developmental delays. They will rejoice with me that I consider myself blessed..... and be secretly glad that it's me and not them.

How can you possibly convince people that you really love having a child with Down syndrome without it sounding like you are just trying to make the best of a difficult situation?

You can't.

I so wish I could see this as a simple education problem, but I can't because it's not....its a spiritual problem. People always see what they want to see. Therefore, they will see suffering where none is, they will see hardship when none exists, and they will not see joy where it is in abundance in order to justify their behavior and pacify their hearts, so that they can do what is easy and convenient.

There is one who blinds their eyes, who has come to steal, kill, and destroy. They are deceived and no amount of education will prevent their hearts from believing the lies they so readily embrace.

It is not just the unborn that suffer from the deception. I have read the stories and my heart also aches for the women who have chosen wrongly and now must face that choice every day. They are often overcome with grief and guilt. They will never be the same.

Senseless is the only word that comes to mind.

So what do I do with this passion of mine? I still educate and advocate every chance I get. But, I also pray, fervently, for those who are making the choice and for those who have already made it.

Down syndrome clinic visit

2010-01-26T14:02:00.002-05:00

Eon went for his one-year visit to the Down syndrome clinic at Riley, yesterday. For the first time, it didn't lead to any other appointments or tests. I was beyond thrilled! Everyone told me that all the hubaloo would die down after the first year and I guess they were right. The doctor actually wrote, "Looks awesome!" on his follow-up sheet! :) We go back in 6 months. Yay!

He had his well-baby visit at the general ped's office today. His pediatrician, Dr. Kidd (isn't that a perfect name for a pediatrician) said, "Honestly, Tara, I think you could take him to any doctor's office and if you didn't tell them he had Ds, they wouldn't know it." That really surprised me because I really "see" Ds in Eon. Dr. Kidd says that he does, too, but only because he knows he has it. Interesting and a little frustrating. I talked to another mom at the Ds clinic yesterday and I realized half-way through the conversation that she had just figured out that Eon had Ds, too. I would like for other families to have an instant connection with us. I swear we need a secret handshake or something.

Eon had another round of shots today and cried when he got them. Last time there were no tears and it kind of freaked me out, so I was actually relieved to hear him cry. He was over it by the time the nurse put the band-aids on him, though. He's not one to hold a grudge. :)

Passion #2 UPDATE

2010-01-21T14:08:00.003-05:00

God, in His great mercy, has provided a family for Sasha! Yay, God! ALSO, Marshall has one, too!!! AND, another little squirt, Charlie, who is already five and very much at risk and has been in my daily thoughts and prayers, has one, too!

When I told my kids about Marshall and Charlie, Tali (6yo) said, "What?!? I thought we were going to sell brownies at church so we could take them!"

We had talked about having a bake sale as a way to raise money for the 2010 challenge and, somehow, she got her wires crossed! :)

Passion #2

2010-01-20T17:11:00.005-05:00

I discovered another passion when Eon was only a few months old and I stumbled across http://www.reecesrainbow.org/ . It had never occurred to me to wonder about the fate of children with Down syndrome in other countries. But, suddenly, I knew.

And I will never be the same.

I have spent countless hours since that moment pouring over the sweet faces of those children, loving them like my own, and interceding on their behalf. Some of those children have a forever-grip on my heart.

We have signed up to be prayer warriors for Marshall, an adorable 2 1/2 y.o. with blonde hair and blue eyes. Even our younger kids are faithful to pray for a family for him everyday. They are praying for him to get a mom and dad, brother and sister, and a dog and cat. Apparently, a guinea pig is optional. We pray for his caregivers, that someone will take a special interest in him and give him extra attention and love. We pray that he will be comforted when he's hurt or afraid. We pray for his health and we pray for moments of pure delight and joy.

Honestly, I am overwhelmed by the need. There are too many children and too much money is needed for families to adopt them all.

BUT, the "$100 for 200 in 2010" challenge gives me a real focus and a hope. The idea is to have 200 people commit $100/mo this year. Each month the money will go to a different orphan's fund. Our hope is that we can raise the full $20,000 adoption cost for one orphan each month.
The information/background on the challenge can be found here: www.the30dayjourneyforhope.blogspot.com/2009/12/update.html

There are many willing families for these children, but the cost is prohibitive for most.

If you can't contribute $100, give what you can! If enough people give (no matter how small a gift), we will see TWELVE children find a forever family this year!

This month's child is Sasha (orphange #2, I believe). Hurry, the month is winding down!

Passions

2010-01-15T14:51:00.004-05:00

When we first got a Down syndrome diagnosis minutes after Simeon's birth, my world changed. Not in the way one might expect, but change it did. I became passionate in the weeks following about several things. First, I became passionate about learning all I could about T21...about what we should expect, early intervention, supplements, possible medical issues, etc. I lived, ate, breathed, and slept Down syndrome. I researched, asked questions, joined a Ds online support board, and read countless blogs of moms who've done this before me.

Interestingly enough, after about 8 months or so, my passionate research of Down syndrome waned. It is no longer "all Ds, all the time" in my brain. And, no, I did not exhaust the literature, just the need to know. I do feel like I have become an expert, but I think my insatiable thirst for knowledge on the subject was more about feeling as if I had some control. Knowledge is power.

Except when it's not.

Control is an illusion. More knowledge about what might happen does nothing to prevent it from happening. More knowledge about Ds will not increase my son's potential. In the beginning, I needed for Eon to be a Down syndrome superstar. He was going to break all the records and meet every milestone on time....

Now, I just need for him to be fully Simeon.

I will continue to learn more about Ds, follow the research, and ensure he receives every opportunity; but, I no longer need to do all that to prove something to anyone, including myself.

Music

2010-01-14T12:20:00.003-05:00

Like most babies, Simeon loves music. I have sung to all my babies, but this kid actually seems to like it. If he's fussy (which generally only happens when he's waiting for an overdue bottle), I just break into song to soothe him. He's a huge fan of "If You're Happy and You Know It", but a new favorite is the Hee-Haw classic that starts, "Where, Oh Where Are You Tonight..." He really likes the spitting part. :)

When he was a newborn, my husband read somewhere that the group, ABBA (Of "Dancing Queen" fame) has a huge Down syndrome following....something about the off-beat that appeals to those with Ds? I don't know. But, every once in awhile, Daddy puts on an ABBA song just for his boy. I think we'll have to wait until he's older to see if he really has a preference for it. :)

Ouch!

2010-01-13T20:41:00.002-05:00

Eon sustained an injury the other day. His 6-year-old sister was entertaining him while I cooked dinner. She put him on the couch (big no-no) and wanted to take a picture of him, but couldn't work my phone....so she came into the kitchen to have me unlock it. The poor little guy did a face plant into the throw rug. He got a terrible rug burn (more like road rash) across his nose. I would post a picture, but my husband and older daughter assure me that this will never be the "cute little memory" I think it will, and I should just let it go. Personally, I find him adorable with a hideous scab across his nose....although maybe it is a face only a mother can love. :)

Outcomes

2010-01-08T22:14:00.003-05:00

I recently read a comment by a woman who is pregnant with a baby with Ds. She has chosen to continue her pregnancy. She wrote, "It's terrible to have to go through this because either outcome (termination or a baby with Down syndrome) is not what you want."

I've been thinking about that for a few days. She doesn't know it, yet, but I think she will one day change her story on that. Simeon, extra chromosome and all, is a very positive outcome, indeed!

Monologue to God

2009-12-31T15:24:00.004-05:00

I want to take a minute to publicly thank God for 2009. I hope you don't mind (and, if you're not of the same mindset...I hope it won't send you running to the hills. :)

I praise you, Lord, for increasing my faith.....for showing me that even when all is stripped away, You are here.......and you are enough.

I thank you for my sweet Simeon. Thank you for allowing instant/intense love for a little boy who continues to change our hearts and lives in so many ways. Thank you for introducing us to the amazing and wonderful club of Down syndrome and for giving us a blogging family of parents on the same road.

When Shawn decided to quit his job and become self-employed, we never dreamed we would be walking the Ds road at the same time. It could've been such a disaster, but You made him successful......always supplying job after job and using his flexible schedule for the benefit of our family. You knew that with heart surgery, extra appointments, and therapies, there was no way we would've survived (let alone thrived) with his former schedule and You put this on his heart for this reason. Your timing, as always, was perfect.

Although I'm not through it and have no complete resolution, I'm grateful that You love me enough to challenge my theology. You have given me the desire to question everything I thought I knew, knowing that I would eventually land at truth.....that You are real and that You care......and that all the extraneous, meaningless crap would be filtered out.

Thank you, God, for my family, for allowing me to be a sahm for the first time, and for teaching me to enjoy the chaos.

I know I complain about this often, but I really do thank you for making me the kind of person who wears her heart on her sleeve with a complete inability to live, or even vacation, behind any kind of mask.

You are good. While the circumstances were hard, I know that I'll remember this as one of the best years, yet.

New pics!

2009-12-25T17:07:00.000-05:00

All I want for Christmas...

2009-12-20T21:29:00.003-05:00

I need a friend. I could not imagine my life without my blogging friends who share this journey with me. Truly, they are a gift from God. But, I would very much like to have a real-life, flesh-and-blood, local friend to ride this ride with. I long for playdates, therapist comparisons, and a familiar face at those awkward Down Syndrome Association parties. I am so blessed to be part of the Ds community, and yet, I'm feeling kind of excluded from my real world.

Part of me is struggling a bit with Down syndrome right now. Eon will be a year-old next month and for a year, I have been almost consumed with all things Ds. It has been a necessary immersion. I have become an expert in order to best advocate for my son and to meet his needs. I don't know if my melancholy mood is because I feel the interest and support fading...it's been a year; get over it already. Friends are moving on. But, I never will. This is forever and I am feeling small.

Maybe it's because Eon's delays are starting to become more noticeable and I can't slide under the radar anymore. I don't compare him, but I feel like others do. Maybe it's because the finality of it all is finally penetrating my thick skull.

The conflicting feelings of this year have been exhausting......joy, because he's so incredible and sweet and hilarious; sadness, because of what might have been; fear for his health and well-being; contentment to be part of the club; anger over the senseless slaughter of so many of his peers; and certainty, because he is exactly who he was created to be.

Yesterday, I almost lost it when I heard "Joseph's Song" on the radio. "Why me?" is a feeling I identify with at times. I sometimes want to ask God, "What were you thinking? Why would you think that I can give this child what he needs? Why did you decide to choose me for the task?"

And, sometimes, I feel blessed beyond measure and unworthy of such a gift.