With each day that passes, Ellie grows older. She is no longer a baby....even though she likes to pretend she is! She is a little girl. Graduations are occurring all over the country...elementary, middle, high school, and college.
And I bet each parent is thinking the same thing...this happened so fast, my baby grew up right before my eyes, and man, time really flew! I think about all this in a completely different way.
David and I will be those parents sooner than we know. Time doesn't and won't slow down.
But we need it to. I mean need it to. Each day that passes, is one more day that Ellie has to live with the insatiable hunger that PWS dishes out. Yes, it's a spectrum disorder, and yes, different individuals experience the insatiable hunger at various levels, ages, and intensities, BUT they will all have to deal with it. And I want and long for that to CHANGE. I want to change the course of this syndrome. Human Growth Hormone (HGH) changed the course of PWS in 2000 thanks to incredible parents, researchers, and medical professionals. But PWS is complex and it's complicated...the brain is involved, and that's tricky business.
With each day that passes, Ellie becomes more independent...
I love that, and hate that. Every parent longs for their child to gain independence, make good choices along their life journey, and ultimately contribute to society....I'm no different. David's no different. But PWS has thrown us a curve ball, and makes me scared. Can you see why I need time to slow down. I need more time and days for Ellie to be able to live independently. At this point in time, as it stands with the state of the disorder's trajectory she couldn't be left alone around food...she would need help...she would need to live with us or others that could help her. And while, I fully accept this and will do whatever it takes to keep her safe....I long for her to live life FULL and independent of David and myself. I have hope, I have fight in me, and I know my God is bigger than PWS.
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