Thursday, September 29, 2011

Noonan Syndrome & my baby girl...

When we got the autopsy results back in May, they stated that the most prominent analysis they could give us is Noonan Syndrome, due to Caris' symptoms. I did some research on it then, but didn't really take it too close to heart because they couldn't be certain and I didn't want to entertain some idea when it wasn't 100%. But no diagnosis would ever be 100%.

Chris and I were watching Law & Order the other night, and a character on the show had Noonan Syndrome. We had seen pictures on websites, and some of them had the same features as Caris, but this grown man with Noonan Syndrome made us both take a few moments and really discuss it.
After a bunch of tears, I started researching again. So, I have been doing a lot more research with different resources than before, and they really do make sense, that it is what Caris had.
The Mayo Clinic has the best descriptions of it... click here to read.
We don't feel any better knowing this. Neither of us have been diagnosed with it, nor have traces of it in our DNA, meaning it was a random mutation of genetic material at the time of conception. Of course, all I keep thinking over and over again is why... why did our baby girl have to have this random disease?!?!

But, after looking through everything, should we be thankful that Caris did not live her life in pain, with all of the symptoms she could have had... possibly never having children of her own... That just kills me to think of. I know how much I wanted her, how much I longed to be her mother. How would she have felt had she never had that opportunity???
None of this makes me feel any better, except to know she isn't in pain, and she never will be again. I just miss my baby girl so much. I can't believe she would have been 8 months old tomorrow. Eight. Months. Old. I just want to hold her in my arms and kiss her face and tell her how much I love her. That's what I long for every single day. It doesn't get easier as time goes on, but it isn't as gut-wrenchingly painful as it once was.

1 comment:

  1. I'm so sorry for your loss.

    Sorry too that your first real introduction to NS was the Law and Order episode since it was portrayed so... let`s go with "incorrectly". But I'm glad it prompted you to research further!

    I found you on my followers list - thanks for finding us! I'm sorry Caris' life was so brief. Lauren has taught us so much about everything - being a better parent, how to fight for my kids health needs, what it really means to love unconditionally and even when it seems like my entire world is falling apart - Again - there is strength still to carry on because I don't have a choice in the matter.

    I read back through most of your posts. It's horribly hard to see all those other families and watch them grow. It's still hard for me - 3 1/2 years later. The differences are getting more instead of less noticeable for me though I'm sure no one else sees what I do.

    God blessed your lives with Caris for a reason. Maybe it hasn't been fully revealed yet.