Receiving a diagnosis of Prader-Willi syndrome is not something that any of us would ever choose, nor would we wish it for anyone else. The stories we are told, the pictures we are shown, and the future we are told to expect add layer upon layer of sadness on our hearts and we just donâ€™t know what to do. Many of us, in our desperation, find our way to message boards like the one FPWR hosts, because we are frantic to talk to others parents and to hear of their experiences, praying our hardest that someoneâ€”anyoneâ€”will offer us even just a little hope. When we do, to our delight, we find generous parents who offer support and encouragement, a place to share laughter and tears, and, in many ways, a â€œfamilyâ€ that we come to love and trust. Like you, I read the stories that are posted about various children and I feel like I am reading about my nieces and nephews.
Two messages that were posted lately were particularly touching and Iâ€™d like to share them with you here. I have gotten permission from both parents to use their stories here and will use abbreviations to insure their privacy.
First, Maria S. writesâ€¦.
Sometimes itâ€™s not our situation – but how we see it….
I still look at my son (even after his school aide ticked him off over not getting a snack before Jazz band and he destroyed his $200.00 glasses â€“ (now think about whose fault that really is) and think he is a great joy. Heck – my other kids wasted $4000 braces by not wearing retainers, trashed a $5000 car by putting more money into it playing with it and forgetting it needs oil so the transmission won't blow up, or wrecked the family car by not putting it into gear and letting it roll down the hill and hit a phone pole. Oh wait – there was also the one that….. Get the picture?
Itâ€™s all about perspective. My son has a sweetness and innocence about him that will never go away – and when I keep in perspective what he and every other kid does – I can handle it. Yup – he has his nasty PWS moments – but he is a pure joy. And yup – I hate going to school to argue for his needs – but that is not his fault. Itâ€™s the schoolâ€™s!
Hugs and Joy,
Next, Rachel S. writesâ€¦.
Hello All. I know sometime people try to share encourage and uplifting thoughts so I thought I would share what I have been thinking.
I went to a support group last night for parents in my community who have children with different diagnosesâ€¦…I always knew that there were disabilities that are far more severe than PWS but seeing other disabilities that result from deletions on the same chromosome really hit me hard. I know that PWS is not an easy thing, and I am not naÃ¯ve enough to believe that I fully understand what raising a child with PWS will be like or the challenges that parents of kids with PWS face. My son is only 19 months old so a lot is still unknown. However, I am truly grateful, and more grateful than I was a day ago, that my son is on his way to walking and talking and that he can already communicate his needs to some degree.
Again, I am not trying to minimize PWS, and I know that most of us have days when we say â€œWhy me? Why did this have to happen to this innocent child?â€ â€“ but to be fair I think we should all count our blessings and be so grateful for all the advances we have seen with PW, how well many children with PWS are doing, and all they we can expect in going forward â€“ thanks in a large part to FPWR â€“ that will allow our kids to have bright futures.
From the keyboards of parents with both an older child and a younger child, we all hear such a strong message of hope! Both moms, speaking from their hearts, draw us into their optimism and their attitude toward life with PWS, and we go away from this feeling better, feeling lighter.
Thanks to both of you wonderful moms for sharing your children and your lives with us. Your stories, and so many like them, are helping to lift the layers of sadness from our hearts and give us courage and strength for each new day!