Thursday, September 30, 2010

Stream of consciousness

When I was in eight grade I had this awesome English teacher who made us journal. We had to write for a specific amount of time without stopping. If we didn't know what to write then we were to write "I don't know what to write" over and over again until time was up. It was supposed to be our thoughts as they popped into our head. I loved it. Although this post won't be exactly that, it will be all over the place and possibly have that feeling. Welcome to the world inside me head. :)

First of all our friend who had the motorcycle accident has made a remarkable recovery. We went to see him today and he is about 90% himself again. His personality is back, he was talking with us and laughing, and his beautiful wife was beaming with happiness at how things have turned out. So to recap on Saturday, September 18 he had a motorcycle accident where he hit his head, broke his neck, ribs, and collar bone, crushed his right jaw bone, and had some other road rash areas. On Friday October 1 he will be released from the hospital to go home. He will still be doing some more p.t. and such, but it's truly miraculous.

Secondly, this is what I read before I left to take Abigail to see the developmental pediatrician yesterday; I considered printing it off to give to her after last weeks appointment.
However, I didn't need it. She was PHENOMENAL. I'm not certain I can put into words how great I felt when we left. It wasn't because we got great news about anything, but because she was kind, compassionate, and NOT cocky. There were a few things she said she would have to think into more and research before giving me an answer. I liked that a lot. It went so well that I cried happy tears on my way home.
There has been this building list of "little" things going on with Abigail that we keep having to sort of push aside because nobody seems to know what they are or if they are connected. After yesterday we have two possible diagnosis that we will be seeing other doctors to confirm (or deny). I LOVE Dr. Julie Keck at Riley Hospital for Children.

My next thought was after reading someone else's blog. Someone who's son has down syndrome had a friend who offered for her and her pastor to come pray that God would heal him. The mom said no thank you, that the extra chromosome was what made him who he was, and she didn't want him to be healed of that any more than she wanted his eye color to change. It was part of his genetic make-up.
And that was when it finally hit me. I don't pray for Abigail to be healed. I pray for God to be merciful and that she will have a mild case, but it always has felt unsettling to ask God to change the fact that something on her 17th chromosome is coded incorrectly. And this woman's response helped me figure out why. It would be weird to have an Abigail without cafe au lait spots and freckling. It wouldn't be Abigail. Her things that indicate she has NF are things we have grown to love about her more and more...even her large head. We don't want those to change. We don't want her to get tumors and so on, but we like the way God made her. So I am settling in to not praying for God to change her genetically, but just to be merciful in the things that could happen.

And lastly, since I haven't posted any pictures in a few post I will post the pictures of a sweet little girl brushing my hair for me...with only slight amounts of pain on this extremely tender headed mama.

And there you have my thoughts on life as of late,

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