PWS Glasses

I am not referring to glasses for my child with PWS, I am eluding to how, as a parent, I feel I am always looking at Ayden Jane through 'PWS glasses.' I have no idea if this will make sense, but on the off chance it does, here goes.

We are blessed by how great Ayden Jane is doing. Not that she would be less of a blessing to our family if she were not, just that so far, she seems less affected by many of the things that come with PWS. We have so much to be thankful for. We have not done anything more than any other parent of a child with PWS, it just seems that the help is working. She has learned to do so many things and really can do most anything that typical kids her age can do. It may take a bit more time but she is willing to work at anything and there is little she has not been able to conquer. So you would think that I would just live on cloud nine, count my blessings and go on my merry way. You would think...

I find, instead, that I often struggle with looking at everything Ayden Jane does 'through PWS glasses'. By that I mean if she doesn't eat enough of the things I know will help her be strong and grow I worry. If she wants two bites more than what I thought she would eat I am sure food seeking has started. When she gets tired I don't give her credit for the fact that sometimes 2 yr. olds get tired, I try to sort through the host of things that might be off.... When we go places I am on alert looking for possible food issues and forget to enjoy the day. If she wakes up at night I wonder if sleep disturbances are coming. When she throws a tantrum or gets whiny I am sure it is PWS behavior problems. If anything is off socially my brain screams autism...

I have got to learn to take those glasses off. Sometimes when your 2 a tantrum is just a tantrum, being tired is just having played hard, waking up at night is normal (like my son did forever), getting into a pantry is just being mischievous, saying words improperly is funny and normal and whining is just trying to get our way.

We just work so hard to get where we are, it feels like one 'mistake' could change everything. Yes, I know that is not logical. I know that it took hundreds of little things to get where we are and no one thing will unravel it all. On the other hand I also know that this is a battle, no, a war with many battles to fight. So how do you find rest from the fight. How do I teach Ayden Jane to fight this thing, but also find rest. I want her to know that she is first and foremost Ayden Jane a goofy, sweet, amazing miracle of a kid. I just love her and want to give her the best possible start so she can let all that she is shine through.

Relax. Find Balance. Work hard but remember to take off the glasses and enjoy. It's a plan anyway.