Sunday, November 15, 2009

How Do We Value Life?

"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.

This sucks.

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.



  1. No words of wisdom here. Can't say that I've been there, done that. Just know I'm thinking of you and sweet Quinn and I hate IS too.

  2. I'm sorry your heart is hurting. I'm waiting for the day things are better. I love Quinn, she's in my thoughts and prayers constantly, and I hate IS too.

  3. I know what it is like to be in the midst of ACTH. The word "horrible" just doesn't desribe it. Sophie went through 2 rounds of ACTH. Neither round worked.

    Has anyone suggested vitamin B6? Neuros mostly suggest it with the use of Keppra (anti-epileptic drug) to help with the mood swings caused by Keppra. But we used it for Sophie while she was on ACTH. It seemed to help.

  4. So sorry you are going through this. I say a prayer that the ATCH will work. I really hope it works well. I hated Abigail IS worse then when she had her heart surgery. They were scary then that. Quinn will pull through. Once Abigail was off the ATCH she was a changed baby. Sending you hugs and good thoughts. Carol

  5. I wish I had some magic words of wisdom and comfort to help you as you travel this difficult path. You guys are in my thoughts often. I hope you both feel better really, really soon! ~Courtney

  6. Karyn,

    She will get through this and you will have your sweet girl back! I know what you are going through and I am sooo sorry that you have to have this experience too. It is horrible and sucks but there is light at the end of the tunnel. Keep focused on the goal of getting your Quinn healthy again and take it one minute at a time.

    Big Hugs,
    Cara & Lindsay

  7. It OK to be jealous of those kids who are only dealing with Down syndrome. I know, they seem light years ahead of your kid. I haven't read the Brags section on Downsyn for years. But our kids will do what they are able to do in their own time. Big hugs.

  8. Karyn, I hate that you and Quinn have to go through this. My heart breaks for you. Please know that I am thinking of and praying for you daily. BIG HUGS to both of you.