PWS Awareness Month- Day 28

Hi Everyone,

What I hope you took from yesterday is that as a community we are making progress!  We have so much hope for Kemett’s future.  I also hope you see from all of our posts this month so far that we are not discouraged or sad.  We have chosen to look at Kemett’s strengths and in his abilities!  One of my grandpa’s favorite quotes was, “Every dark cloud has a silver lining.”  And it’s true.  It may be hard to see it when you are in the storm or even right after, but when the storm starts to clear a silver lining will always appear.

All parents who have kids have hopes and dreams for them.  They think about what their life will look like, what they will do and who they will become.  I’ve learned over the years that we don’t know what life has planned for us so we need to be open.  Just because Kemett was in NICU, received a diagnosis and is somewhat delayed developmentally does not mean that we don’t have these same hopes and dreams for him.  I’m sure it is hard for some parents to come to terms with the diagnosis and are in a state of grief or denial longer.  For us, we moved quickly out of that stage and into what we can do to make Kemett’s life the best it can be.

As I’ve said before, it was hard at first to see Kemett for the baby he was.  But soon, had a doctor shake some sense in me.  I soon started to focus on Kemett as a baby first and later diagnosis second.   Andrew talked earlier this week about the doctor who told us Kemett wouldn’t be a track start (prediagnosis), and at the time it did not phase us.  Those of you who know us well understand.  But just because he might not be the star athlete does not mean his life is over.  Kemett will have his own hopes and dreams.  We will do everything we can to help him achieve them.  We will treat him like we would a typical child.  And if Kemett does want to run track, we will figure it out.

We have hope that through research and clinical trials, we will have treatments that will allow Kemett to not feel an insatiable hunger.  We hope we will find a treatment that will allow Kemett to be independent- drive a car, go off to college, get a job, find a partner or whatever he wants to do!

We are not going to set limits for Kemett.  I won’t say this has been easy from the start.  Like I’ve said before, I struggle with what other families think, but I am learning that if I want Kemett to thrive then I will make sure he has the same opportunities and interacts with typical kids.

It also helps that we have met such an amazing PWS family!  We have friends all over the country now who have the same passion we have for our kids and for raising money.  It helps keep us motivated and pushed to do more!  This community is doing great things and our kids are thriving because of it.

I have hope also because I see how well all of these kids are doing!  Their parents are pushing them and letting them live their dreams.  It is inspiring.

We hope that Kemett will “LIVE LIFE FULL!”

Thank you as always for following our journey!  Let us know if you have any more questions!


The Demands

Kemett having fun at the NICU reunion!

Kemett having fun at the NICU reunion!



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