Wednesday, October 17, 2012

The Other Shoe

Ayden Jane is still doing so great.  She is not concerned much with food, doing great in school, hilarious around the house...

So, the big question is why am I so stressed when it comes to her right now?  I feel like I am constantly waiting for 'the other shoe to drop' so to speak.  I guess last winter took us in the wrong direction and I felt the reality of how quickly things can go awry that I can't help but to worry about it.

Sometimes I feel like I am in such a no man's land with Ayden Jane.  I technically am the parent of a special needs child, but to most people AJ is not a special needs child.  Sometimes it is hard when hanging around with other parents and their little ones and watching how easily things come for them.  How the assumption is just there that their child will read, write and do all things in school successfully.  That they will have friends and play sports or be in the band...  All the typical ideas and dreams parents have of their kids.

I really have no reason not to picture all those wonderful things for Ayden Jane as well, but I feel afraid to do so.  I guess it is a way of guarding my heart.  Five years ago when she was born we feared the worst.  As each day passed, she improved and tests for horrible things came back negative.  We began to allow ourselves to picture her life as all good...  Then things changed and we met Prader Willi.  We were told things that made the beautiful picture in our minds of her life darken.

We did not allow that to slow us down or stop us and we learned not to believe in a diagnosis, but to believe in Ayden Jane.  She showed us daily that she could handle any challenge head on and she proved quickly that she was Ayden Jane, an individual who would not be defined by a diagnosis.

Last winter was hard and we sort of met the Prader Willi that is lurking in there.  For whatever reason infection/illness lets it run rampant.  We learned first hand that food seeking, hunger and behavior issues with PWS are hard to live with.  Then this Sept. we received glasses and a diagnosis of scoliosis.  More evidence that Prader Willi is always there and pops up at a moments notice.

Even as I reread the thoughts I just wrote I see and feel the tug-o-war inside of me.  I totally believe in Ayden Jane because she has made me a believer but I struggle to trust she and I will be able to continue to conquer all the challenges.

It is a cycle we all parents with PWS (and likely lots of others) deal with.  New challenge like scoliosis - knocks the wind out of you - you panic a bit - you rally your troops - you make a plan - you dive in and refuse to allow it to win....  You begin to think maybe all is good, but you are still a little scared. 


  1. Yup. Not sure what else to say than that. I'm there.

  2. I know exactly what you mean. Sometimes it feels like a no mans land. You work so hard to get your child to a place that feels like normal, but it never really is because it took so much work to get there and to stay there. And you never know what else is around the corner.