Friday, March 9, 2012

Down Syndrome

Okay, so you want to talk about it? I'll talk :)
I find myself at this point in my life, where I am 26 years old, married to a most handsome one-day-in-the-distant-distant-distant-future orthopedic physician. I have a healthy sweet 1 1/2 year old. And I have a 4 month old with Down Syndrome.
That probably doesn't read all that strangely to you because it's NOT you. But I was once just like you! Could not imagine having a special needs child, and had no reason to think I would ever have one. But go there for a moment, picture yourself with the reality of that. It's kinda crazy isn't it? So crazy that you definitely can't even realistically try to go there...I know that b/c I've been there.

So this new baby we have. He is the easiest, sweetest, thing in the world. He smiles all the time, and it totally melts my heart. (bad pic b/c I can't ever catch a smile with the big camera :)

When we first had him, it was rough for multiple obvious reasons, but it was rough having to open him up to the world. Not b/c we wanted to hide him or were ashamed of him, but b/c people couldn't possibly love him like we do. People couldn't possibly look at him and see L instead of down syndrome. Kinda like how some people keep their finest jewelry in a safe. I totally wanted to put my baby in a safe of sorts.

I have since realized that people are capable of loving him like we do. Some of my amazing friends (ahemm Sydney & Michelle..) have told me how they don't see the down syndrome when they look at L. It is the sweetest, most precious thing to be told b/c I know the only reason why they don't see it is because they just see L, and that's because they love him. :)

He is special. Yes, he has special needs, and no, he isn't any more special than any other child. But, he IS special.
I think about if John and I were the only people on the earth. And we had our babies. We wouldn't know anything different. L would be different from V, but by the same token, V would be different from L. We would have 2 different children, and isn't that how it goes? All children are different. So, L is slower to get the hang of things already, but maybe V was just super fast? I struggle with saying something is 'wrong' with L, because he is L. He is the L that God placed in our home. So while the world may label him with DOWN SYNDROME, I just label him L. He's God's L, and I was blessed enough to be chosen to be his mommy.
I also think about how we all have these precious babies and no baby comes out with their IQ stamped on their forehead. Nor do they come with labels like 'smart' 'pretty' 'slow' 'mean' 'greedy' or 'athletic'. And we are all fine with that. As parents we assume our kids will be smart, play sports, have friends, and be nice. But the reality is that not all children turn out that way, and how sad if those children came out with labels that said "barely graduates from high school" or "socially awkward". Parents would have a natural tendency to not push the 'not smart' child in school b/c 'they just aren't smart'. And the 'socially awkward' child's parent might not be aggressive in helping him find friends. I mean, if we knew how they ended up regardless of our efforts, why waste the work.
But L kinda did come out with labels.... I kinda know how he will look, act, learn, love, and live. But instead of making it this sad thing, its kinda cool. I get to have a clue about some battles and struggles we may face in the future. But what I don't know is how many victories we will celebrate. Each one will surprise us and give us such joy!
So how is my L? He's doing great. I'm going to talk basic things about children like L, so this may bore you...But it may be good education for some. Babies with down syndrome have health issues. period. Now, there may be exceptions to that rule, but as a rule, they have health problems. The degree of those health problems range from minor to major, but all are at the very least mildly intellectually disabled. Most babies have heart issues, (a whopping 50%) and I now know what a blessing L's heart was! Although it isn't perfect, it doesn't require surgery or any special attention!
Children like L have low muscle tone. For now, at this stage of his life, it means that at 4 months, he still can't hold his head up. His legs flop out like a frog and his whole body can feel 'loosey goosey'. L has a lifetime of physical therapy ahead of him. L gets tummy aches fairly often. His low muscle tone makes it hard for food to move down the digestion system. And his low muscle tone affects his eating. Who knew so many muscles were used in swallowing?! Well, the muscles' in L's throat are loose too, so when he swallows liquids, the liquid splits and half will go down the wrong tube and into his lungs (aka aspirating/aspiration). L's swallowing is so poor that he just barely passed the test to not have to get a feeding tube put in. Yay, for that victory! But back to his bottles, we use a thickener (that costs us an arm and a leg...most literally...but I'm NOT complaining) with his bottles. They call it a 'thick honey' consistency. And it's pretty much how it sounds. Super globby (word?), but it keeps the liquid in a thick consistency so that it all stays together and goes down his throat in the correct path. Praise the Lord for modern medicine, I hear my heart echo this so. very. often. lately! Theoretically this thickener is not a forever thing, its just for now and for however long 'now' may be.
L is farsighted. His glasses help to correct this. His eyes work so hard to see that without his glasses, his eyes could tire out and give up seeing all together. So now you are thinking it too, huh? Praise the Lord for modern medicine/drs/glasses! As his eyes grow, his vision will improve. So the glasses could be a temporary thing also. His tear ducts are clogged so his little eyes are constantly draining 'sleepies' from them. Praying this resolves itself, or we will have surgery to fix it late this summer.
L's tongue is larger than your average tongue, which is why you may see it often...:)

BUT, guess what's cool about all this...
L has taught me so much. I can feel pain, for others, in even the smallest of things like I never did before.
God? Oh my goodness has God become SO BIG and SO REAL. I mean 'up, close, and personal' like I can feel him breathing beside me sometimes...(not that He breathes..but you get the picture)
I was at a thing a church once and this great woman was making a statement that if your life looked just like your friends' lives or your neighbor's life then you were doing something wrong b/c God doesn't call us all to the same life. This totally hit home! I know my calling (at least for now) and how cool is that! Little L is exactly, in every way, what God wanted for me and my life. Raising all of my kids is my calling but unlike others, L is my lifelong calling.
okay! Enough RAMBLING... I'm apparently back at blogging so I'll ttysoon friends