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A blog about our busy family with two amazing kids, one of whom happens to have Down syndrome!

Friday, July 6, 2012

Faith and Down syndrome.

There was recently a blog hop of a bunch of bloggers in the Ds community blogging about faith and Down syndrome. I totally missed it, but it's a post I want to write so here goes...

I make no secret about the fact that I am a Christian. While I don't necessarily agree with everything the Church says in regards to social issues, and well, probably some religious issues too. I most definitely identify myself as a Christian. I don't feel the need to fit my beliefs into a box with the label of baptist, catholic, protestant, etc... My label is Christ. And I'm okay with that.

In all honesty when we first got Lauren's diagnosis at 18 weeks pregnant I thought I did something wrong. I searched my heart for what I had possible done to be punished in such a way. It was rough for me. I couldn't picture a normal future and I knew it was my fault. That feeling went away after a while and I was okay with Lauren's extra chromosome. In fact, I loved it! I still do.

I don't know why I got Lauren. I don't know if I ever will. I don't know if she was given to me for a specific purpose or reason. But I do know that she is absolutely perfect, made in God's image. Her extra chromosome is on purpose. Her having Down syndrome is on purpose. That is what I truly believe. She is such an amazing gift that I absolutely do not deserve. I hope I can advocate for her to my full potential and teach her to do the same for herself. I want her to know how truly amazing she is and that God put her here for a reason. She is perfect. I believe God gave her the extra 21st chromosome. If I had a magic wand to take it away I wouldn't do it. She's perfect exactly the way she is. I am thankful that she has Down syndrome. Hope is her middle name for a reason. God gave me a new lease on life through Lauren and our hope for her future is endless.

Then we found out about Lauren's heart. The issues are totally separate for me. I'm sure that's kind of a skewed perspective seeings how the reason Lauren was born with her heart defect is because she has Down syndrome, but they are separate for me.

 I had a lot of initial anger, bitterness and resentment towards God about Lauren's heart. Honestly, I still do sometimes. I wondered why God was doing this to our family, to my daughter. I know life isn't fair, but complete idiots have healthy babies. I've blogged about it before. I was angry. I'm still angry. If there is some big life lesson  for me behind Lauren being so sick and spending 5 weeks in the hospital, battling sepsis, a collapsed lung, open heart sugery and tons of pain then why didn't it happen to me? Why her? She won't even remember. I don't think her open heart surgery will have as profound an emotional impact on her as it did me. I hope not, it was devestating.

One of the ultrasound technicians who did an echo of Lauren's heart says she sees a lot of parents who have babies with Down syndrome split on which issue to be angry over. Some are angry over the diagnosis of Down syndrome becaue they know the heart can be fixed. Some are angry over the heart issue because Down syndrome can't be 'fixed'. I think both sides are okay and nothing is black and white, but I think you know on which side I fall.

My conclusion about Lauren's heart? In the words of Forrest Gump: shit happens.

Seriously. I don't think there's a huge reason and life lesson in Lauren's heart defect. I try to search for meaning behind it. I think of how much I've changed since before her surgery and I think most of it is for the better. But I can't reconcile the God I follow using my defenseless daughter in a life lesson for me. Her chest was opened up. Her heart was stopped so she could be put on bypass for her surgery to take place. She was intubated after her surgery because her collapsed lung wasn't allowing her to breathe. Her blood was raging with infection that made her lethargic, sick and incredibly weak. She had a needle drilled into her spine to collect fluid to see if she had an infection in her brain. Her fever reached 104 degrees. She was so sick. I can't reconcile that with the God I know. The idea that all of that happened to my daughter to teach me a lesson makes me sick. Am I thankful for the technology available today? Yes. Do I believe God healed my daughter through surgeons' hands? Yes. But that kind of suffering can't be brought on by God. Not as a punishment and not as a lesson.

Wait, didn't I just contradict myself? If Lauren is made in God's image, isn't her heart included in that? Probably yes. But I'm not there yet. Maybe I'll get there soon. Maybe later. Maybe never. I don't know. Obviously I'm still bitter. As much as I like the person I am after going through what no parent should have  to, I can't find a reason for it.

What I do know is that Lauren is beautiful. And perfect. A complete miracle And mine for a reason. I think she has a lot to teach me, probably a heck of a lot more than I can teach her. I'm okay with not knowing everything. And as long as I get to keep her, I'm okay with not knowing why.

This face? This gorgeous little girl who at 4 months old is full of vibrant personality? She's more than a gift or a reward. She sure as heck isn't a punishment. She's a miracle and a person and I truly believe that God made her absolutely perfect.


  1. Thanks for this! You know, the blog hop is open till the 19th and you could totally join. I think your perspective is worthwhile - and different than what's been written already (especially when you talk about Ds vs the heart defect). I keep thinking I'm going to write something, but I haven't managed to flesh it out yet. I agree that Lauren is beautiful and a gift!