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

Saturday, March 17, 2012

Just thinking...

When I was pregnant with Lauren I thought about Down syndrome all the time. It was always on my mind. I researched online, I read books, I joined message boards (that are awesome!). It was the way I prepared myself before Lauren was born.

Now that she's actually here...it doesn't matter. I don't even think about it. It doesn't cross my mind except for during morning rounds they say she "has a history of trisomy 21" which sounds pretty funny. I'm sure it will "matter" more later on when this hospital stay is behind us and her heart is repaired. But for now it's not even on our radar.

Being in the hospital sucks. I wish I didn't have to see my baby have painful procedures done. I wish more than anything I could do it for her and take her pain on myself. And then I remember...I'm not the only parent in this situation. Every parent on this floor feels the same way I do.

There's a little girl on this floor who is probably around 2 years old. She is absolutely beautiful. Gorgeous. And she needs a heart transplant. Please pray for this little girl and her family. I can't imagine what they are going through, knowing that not only does their little girl need a heart transplant but that in order for her to have one it must come from somebody else's child.

It's humbling to be here at U of M. We are not the only family struggling. We are not the only ones who are sad and Lauren is not the only sick baby.

There was a tornado warning here on Thursday evening and we all had to evacuate to the hallways. It was really nice to make friends and get to know some of the other families here. For me at least, it helped me to realize that we're really not alone in this. Other people here "get it". It really opened my eyes to the fact that we aren't the only ones in this situation.

Just thinking "out loud" today. It's a beautiful, sunny day in Ann Arbor and I'm pretty sure we're taking Ryan to the park later while grandma "babysits" Lauren!


  1. I remember feeling so guilty when Max left the PICU, because there were so many others not doing as well. Parents crying at bedsides. Heart-wrenching stuff. And then I remember thinking, holy crap - my baby just had open heart surgery. No need to feel guilty. Just be extremely grateful for his amazing recovery. And I loved that one of the drugs they gave him was an amnesiac(?) that they said made him forget the trauma. Loved hearing that. And frankly, a week later, he acted like nothing had happened. Amazing. I am in awe of modern medicine.

  2. Oh, and the day Max came home after his OHS, the patient across the hall from him got his heart transplant - miracles do happen! Praying for that little girl :)

  3. Praying for that little girl - and your little girl.

  4. Kristin, that gave me goosebumps!