I've Come a Long Way

Yesterday I had the pleasure of meeting another PWS mom and grandma and their 2 beautiful girls. We visited for the afternoon and talked and got to know each others kids. I have to say Ayden Jane was awesome as she traveled 3 hours in a car to go meet people she had never seen before and spend the day in a place she had never been before. I think that is enough to make most 3 years olds a bit grumpy and out of sorts. Ayden Jane was her independent self, but her behavior was great and she enjoyed the playground and the house of 'new' toys.

I think Ayden Jane worked her magic and brought a ray of sunshine to the families day. I know that I would have given anything to have a 3 year old like AJ run though my front door when I was struggling to figure out what the diagnosis of PWS meant. I tried to answer questions and just show that our life is pretty normal. Well, as normal as a family of 4 kids with 14 years between them and a husband who works nights can be. The time was definitely too short as I felt we could have chatted and played with the girls a whole lot longer, but it was fun.

For my part, it made me realize that it is not just Ayden Jane that has come a long way. I remember the constant worry about AJ, but I don't feel it ALL the time anymore. I remember worrying that she would never __________ (fill in with smile, crawl, walk, talk, read, have friends...). I remember the urgency of every feed, every therapy, seemingly every minute of the day. I remember the feeling that we were one small step from her somehow waking up one day with the entire list of possible challenges provided by PWS. It was oppressive. The first years were just HARD. Oddly though, I knew there was worry and pressure.... but when in the middle of it you just keep going. I remember watching how hard AJ was working and I knew I had to do everything I could to help her. It was interesting to step back in time a bit. To see a Mom facing that worry head on, a Mom in the trenches doing everything possible, a Mom facing a giant unknown with determination and love for her child.

Good parents are amazing but special needs kids teach you as a parent a range of emotion, challenge, strength, worry... you never asked for but, in the end, are unbelievably thankful for. It is a wild ride, and although I would take the challenges away from AJ in a minute if I could, I am truly thankful for the ride.