Sunday, September 3, 2017

Our Lives

Gary and I were chatting about how very different Ayden Jane is this fall. He was noting how totally different she is. I have mentioned lots of ways that is true as we have gone through this pitolisant journey. Ayden Jane feels the difference and mentions it often.

As we talked though, what struck me is how different OUR lives are. I mean our - as in the rest of the family. We went out to dinner tonight, since our kitchen is torn apart with a remodel. As we chat at dinner, Ayden Jane keeps up. She joins into conversation and keeps us all laughing. I know it sounds like a little thing, but it used to be challenging to just have fun family conversations. Either she couldn't keep up and got frustrated or she would constantly stop us and ask us to explain things. She'd ask us to explain words or expressions or word choices or if something was funny or why .... It was exhausting and made it hard for our family to really just relax and enjoy time together.

Our evenings are normal. I get to go to games and events and fun stuff. Last fall, I pretty much just had to stay home with Ayden Jane if anything was going to go past 6. Any moment after six, we knew she could completely melt down from exhaustion or just fall asleep on the spot. We typically chose not to risk the arguments and disruptions that evening often brought if we took her places.

It's like we breathe a daily sigh of relief. We go on about our days without the feeling of 'walking on egg shells'. The general stress level in the house is reduced tremendously. I mean, just the fact that I have been able to go back to work full time, our kitchen be completely torn apart which means the entire house disorganized as there is "stuff" everywhere, workers coming and going (or not coming when they were supposed to be) and Ayden Jane able to carry on. If you have never lived with someone with PWS than you probably can't grasp how incredible that is. Any one of those things in the past would have made for a very challenging balance to life.

Pitolisant has freed Ayden Jane from much of  PWS, and has in turned freed our entire family.

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