I look at this picture, and it takes me back to our Greenwood Genetics visit right before Ellie's diagnosis. That day was so incredibly hard because even though everyone in the office treated us with the utmost care and respect, we were still told things that rocked us to our core.
Clinically, they believed that Ellie showed all signs that would point to a diagnosis of PWS, and I truly believe David and I knew it in our heart as well, but it still wasn't confirmed...we talked about PWS and Angelman syndrome (both were equally terrifying) that day, but spent more time discussing PWS.
We heard things like Ellie will most likely never be able to have children, she most likely will not graduate high school (and if she does it will probably be with a certificate and not a diploma), she will have a hard time managing money, she will have to live with you the rest of her life, she will always have to be monitored around food and could be very stubborn and manipulative.
Naturally, David and I were crushed and tried to remain strong, but we broke completely down. I remember two things we specifically asked, "Will we ever be able to go out to eat as a family? Will we be able to go on vacations as a family?" Two very small things that we took for granted before now. The diet, the food, the behavior, the tantrums, the food seeking, the manipulation, and the safety...could it happen? And then, the geneticist showed us a picture in a textbook, and I feel like some of our hope was restored. We saw a thin, happy little boy playing at the beach in the book. Dr. Geer looked at us, and said, "With a lot of discipline and hard work, this could be Ellie, because this little boy has PWS."
After that, I began to research and read (David stayed as far away from Google as possible) about PWS. I connected with others on Facebook, we became involved with The Foundation for Prader-Willi Research and Prader-Willi Syndrome Association (USA). We hosted a One SMALL Step for PWS 5K. We attended a FPWR research conference. We never looked back. But, I truly believe that we both remembered that picture, because in our darkest moments it gave us hope, and motivated us.
Yes, we can go out to eat as a family.
Yes, we can go on vacations as a family.
Yes, we all can be happy.
This picture above was taken on Ellie's first family vacation to the beach. It cracks me up, makes me tear up, and makes me so happy all at once. She reminds me exactly how I feel when I'm at the beach. Relaxed, slightly hot and bothered (due to the sand, sunscreen and my fair skin), chill and happy. All emotions I had longed for when thinking about taking my child to the beach.
As time has passed, David and I have realized that even though our journey has been hard, it has also come with huge blessings. One of those precious blessings is the friendships we have made along the way. PWS will bring you best friends you never knew you would have, nor wanted! Vacation has morphed into amazing times, now spending it with dear friends that truly get our life. This past March we vacationed with the Peden family, friends we have made through PWS. It was so much more than vacation to us, and I think about that picture our geneticist showed us, and am in awe of the ways God has blessed us since that day. Spending time with this family was wonderful, and yes, we spent time talking about PWS, but we also spent time getting to know one another outside of PWS as well, and had so, so much fun.
Could vacations change a little for us as time passes? Yes, possibly. Could we have to make accommodations as Ellie gets older? Probably. Will we enjoy time together as a family and with friends? Absolutely.
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