"How do we value life? Count all the fingers and toes. Look at the head and make sure it looks like every other kid's head. Think about the brain, make sure it will work like everyone else's. Is the value of life just the sum of its parts?" (Mooney, 2007, p. 191).
I have a beautiful girl.
I value her beyond anything else. I get her value. I didn't need to go through this crap called IS to get the message.
But my heart is aching today. Right in this moment I feel pain in my heart. How can I go from peace to pain and back and forth? I thought I was in acceptance until this crappy thing called IS entered my world.
I used to think I hated DS, but DS is nothing. Nothing. Nothing. Nothing. IS is the thing that sucks. I hate it. There is no value in IS. I eventually found value in DS. My life was enriched. Now this blasted IS comes along. I want to know, what great thing is to be had from this experience?
My beautiful girl does nothing. Absolutely nothing. All day long. Tick tock, tick tock, an entire day filled with nothing - no advancement of development whatsoever. She is miserable. Will all eight weeks of ACTH be like this? But I feel stuck between a rock and a hard place because the ACTH is doing this, but the seizures need to be stopped or else worse will come along. I just don't know what I am going to do if this doesn't work. If we go through all this and those blasted seizures come back - then what? I will certainly crumble. But unfortunately I am not allowed to crumble because I have too much I am responsible for.
And now I am actually becoming jealous of people who have a child with only DS - their kids seem so advanced in their development over my beautiful, beautiful girl. I can't believe I am actually starting to feel this way. I am starting to not want to read certain things, see certain things that didn't bother me before - all because of this pain in my heart.
I feel alone. I feel like I am a parallel world even when compared to the DS world.
I hate IS. I hate it! I will never come to embrace it.
Even Mooney's quote screams IS to me - "Think about the brain, make sure it will work like everyone else's."
But there is value there. There is my beautiful, beautiful girl to whom nobody can compare.
I just have to try to have faith and survive this storm.
IS will always suck though - that will never ever ever change. I hate you IS.
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