Sunday, May 31, 2015

PWS Awareness month - wrap up

First of all, I most want to say Thank You. The love and support we have been blessed with over the past seven years has made all the difference in our lives. I know many of you pray regularly for Ayden Jane and our whole family. It is a gift. So many of you have pitched in and cared for our big kids when we couldn't. You have blessed us financially as we strive to help fund the life changing research going on. You have taken time to care and to listen. You have loved Ayden Jane and not been deterred by the extra time or care she needs sometimes.

As this years edition of PWS posts come to a close, what is most on my mind is how much less I have to say about PWS at this point. Wait. Maybe it's not less as I have tons of information packed in this head of mine that has been acquired over the past 7 years. Maybe it's just different? Maybe I mean it's more organized and scientific. Or is it just less fearful?

How different would the last 7 years have been if I had been given a crystal ball and seen Ayden Jane doing what she did today. Enjoying children's church and singing songs, running, playing with the neighbor kids, doing flips into the pool with the gang, reading to me before bed. If I had heard the words come from her that I heard after lunch today. "Mom, I need to rest my belly. It is really full." 

The feeling of racing against time has finally subsided. The constant push of therapies and checking off milestones and trying to balance supplements and even just deciding which supplements were helping. Searching for doctors who were open minded with what we were doing and up on current research. All the while second guessing myself and devouring every word of reading material and research I could get my hands on.

The worry about whether the decisions to move away from conventional dietary protocol for PWS and the incredible weight of that decision is gone. I know without a shadow of a doubt that the choices we made very early on were right for Ayden Jane. Not perfect, because I don't think there is a perfect, but right. 

The waiting to see which of the long list of challenges that come with PWS would rear its head is over. I believe that whatever challenges may still come our way we will be able to deal with them but I won't be surprised if there aren't many.

The shadow that always seemed to lurk in my mind that one day Ayden Jane would wake up and all the terrible predictions her first doctors had about her life and our lives together would come true is finally no longer noticeable. 

Ayden Jane has gone from my silent, motionless and non responsive little one in NICU, through a host of possible diagnosis which did not offer us much hope and ultimately diagnosed with PWS to an amazing little girl who truly lives life with an enthusiasm that is unmatched. She has no idea that she is supposed to have limitations and has dreams well beyond what we could have hoped for.

I am thankful that the stressful, lonely early years of trying to figure this all out on our own are behind us and get a tremendous joy out of seeing younger children with PWS continue to defy and rewrite the old textbooks of what life with PWS is supposed to look like. 

With great excitement I look forward to the hope being offered in research. With joy I talk to parents who have just received that terrible news of diagnosis and offer them hope. Not promises that their child will not struggle or that there is a magic formula to make up for those missing genes, but a glimpse of the future. An example of a happy, energy filled little girl who continues to take on life with a positive attitude and an unmatched determination.


  1. You don't write any more? I'll miss your posts about your little girl. Your blog is really good for me (sorry for my English) Good wishes

  2. You don't know what a blessing this blog has been for us. When I get down and feel hopeless, I go to this blog and feel better. Thank you!!

    1. Thanks... sometimes I don't have a clue what to say and feel like I am just rambling but I know how much I craved anything to read when Ayden Jane was little.