Wednesday, June 13, 2012

"I just have to love Kristyn with all my heart."

With Father's Day coming up, we asked Rett Dads to be our guest bloggers for the week. Just because these girls have Rett Syndrome does not mean they are not still "Daddy's Little Girl" .... times one million! To all the Rett Dads - thank you for your special role in raising these very special girls. 

our other Daddy posts this week:
Pete Curry: "No laughter. No fun. No thank you.


Blog #3: Sean Schenk, Kristyn's dad

Sharing my feelings about something like this has never been something that I am too good at. When I first found out I was going to be a father to a little girl I was terrified. I was nervous about things like low-cut shirts and boys. After finding out that my daughter has Rett Syndrome I hope to have these worries as she gets older.

Kristyn really only met milestones up to six months old. I was worried about her not meeting these milestones but I always held on to hope that she was just developing a little slower and every thing would be fine. I remember my wife crying at night and me having a hard time relating to what she was going through because I just knew that my little girl was just as perfect on the inside as she has always been on the outside.

It was killing me to get a diagnosis to know exactly what was wrong with Kristyn so that I could know what I needed to do to make it all better. Finally getting the diagnosis of Rett Syndrome was very hard for me. I remember going to work the night we got the news and just feeling broken, like I couldn’t move. I ended up leaving work early so I could be there for my family and truly so my family could be there for me too.

Knowing that Kristyn has Rett Syndrome doesn’t really ever get easier but it is much more manageable to live with now. I know that all I can do is hope for a cure and until that happens I just have to love Kristyn with all my heart.

Kristyn has taught me so much in her two years of life. I am being more and more patient everyday. There are times when I can get so upset because I cannot figure out what is wrong with her or I can’t get her to eat but then all of a sudden she will crack a little smile and everything feels okay. I know that Kristyn has plenty to say I just wish I knew what it was; it must be so hard for her to have so much to say and to not be able to say it.

It is not easy having a daughter with special needs but I wouldn’t trade Kristyn for the world. I have gained so much more respect for other parents who have a special needs child. I love the fact that every day I go on Facebook there is always so much support for me and other Rett families.

I think that hardest part of having a girl with Rett Syndrome is the feeling that she may miss out of some of the best parts of life. I want to see Kristyn be able to go to prom, get married, and someday have children of her own. It’s hard feeling like these things may never happen. Right now all I can do is enjoy the little things like feeding Kristyn and having her fall asleep in my arms. Even when I found out I was having a little girl I never imagined the feeling I would have when I am looking into those beautiful blue eyes she has. Kristyn means more to be then I can describe in words.

Sean  Schenk

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