Saturday, March 18, 2017

How Did I Get Here

I want to share this evening some things that are on my heart. Sometimes I stop and wonder how I got here. I mean, how, or even why, did God bless us with sweet Ayden Jane. At 42 I certainly was not looking to begin such an adventure. I was not looking for an entire new purpose in life. I was not looking to learn crazy amounts of science. I was not looking to be a part of an amazing group of brave families looking to forge new paths for a rare genetic disorder. I was not so smart, or brave or even rooted in my faith to the extend I would need to become.

I thought I was a pretty good parent. I thought I was a pretty good teacher. I thought we had a pretty great life with our 3 awesome kids. Okay, we did have a great life with 3 awesome kids. (and still do)

Ayden Jane entered our fold with a bang. Somewhere on this blog are recounts of the first months and the shock that ensued. That's not really what's on my mind.

I don't know why Ayden Jane is doing so awesome. Maybe that surprises people, thinking that it's all the time and effort and reading I have put in. That sounds all pretty, but reality is, there are lots of mom's that have poured as much and more into their children, and their children are just not where their heart aches for them to be. I am not enough to explain why Ayden Jane is all that she is.

I guess trying pitolisant has my mind racing. I know all the things we have done over the years and been one of the first to do. I know we turned away from what the very doctors who were supposed to know best told us to do, and instead, pushed into new territory.  I know the incredible minds that have brought information to us and am so grateful that God has given me a brain big enough to understand half of it. (maybe more than half but definitely not all of it!) I know I have met people with unbelievable passion to help, and use their gifts to do so. Their commitment and passion is amazing.

I know Ayden Jane has effected, shaped, molded, changed my other kids forever - I hope positively in the end, although it was hard on them. I will always wonder what they would be like if there had not been an Ayden Jane.

I know I am not the same mom or teacher or wife or person I was before all of this. I'm not saying I was better or worse, just different.

I used to wonder what Ayden Jane would be like if she didn't have Prader-Willi Syndrome. Would she have been athletic, or musical, or artistic? Would she rather play in the dirt or read books? Would she be quiet and shy or outgoing? The best thing this Mothers' Day is that I don't wonder anymore. With the addition of Pitolisant, I feel like I am seeing just who Ayden Jane is without PWS. Sure, there are parts that will always remind us that she has PWS, but none of those parts will stop her. As Dr Miller has made me promise, we will save her a seat front and center at Ayden Jane's college graduation.

I know that many, many times I was in way over my head which led me to prayer, which led me to trust a still small voice inside my heart. God has guided our paths and woven an amazing story. I still have no idea where He is leading all of this. I don't know if Pitolisant is the 'final' answer to all that Ayden Jane needs. I don't know how her story will end, but I do know I will faithfully continue to leave her fully in His hands. 

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