Today was one of those beautiful Kentucky days that make me so glad that I live here. As part of a great girls’ day out, I took Kristen and Erin to the local science center and we enjoyed the exhibits and the IMAX. While strolling through the second floor, there was a machine that takes your picture and shows age progression. My first thought when I saw what was coming was to run, not walk, to the nearest exit and escape, but the girls weren’t having any of that. I found myself plopped down and my picture captured, soon showing me old, older, oldest…. When you start out pretty old anyway, the story goes down hill from there!

After I was totally humiliated, Erin sat down and had hers done. Even at her oldest, she looked great, but seeing her age right there before my eyes sent one of those waves of conflicting emotion through me. It didn’t help that it was Mother’s Day weekend and, like all of us with children with PWS, is a time of mixed emotions. As always, we celebrate our children and the joy and wonder they have brought to our lives. At the same time, we can’t help but let our minds wander into the future and wonder what it all holds. Looking at Erin’s age-advanced pictures, I couldn’t help but wonder if she would be happy when she gets to this age, if there will be people who will love her, if her body will be strong, if she will have genuine friends, and, of course, what part PWS will continue to play in her life. It was one of those emotional tsunamis of fear that come out of nowhere and knock the breath out of you. I had about a nano-second to pull myself back together and rejoin the day with the girls, but it really shook me to the core.

As parents of children with PWS, our realities are so different than those who do not share our diagnosis. PWS is so challenging because of the way if affects so many different systems of the body. It is equally challenging because it changes over time. The symptoms seem to present themselves in one way during one stage of life, and then morph into something different in another stage. We become adept at handling one set of issues only to have PWS come in a different form and pull the rug out from under us. And if it’s hard for us as healthy, adult parents to adjust to all of this, imagine how hard it is for our children with PWS to have this turmoil going on inside of them, to feel like their own bodies and brains are fighting against them instead of helping them grow and mature. What a hand to have been dealt!

So, how is it that we celebrate Mother’s Day with all of these constant worries on our minds? What section in Hallmark do we look in for cards to send to each other? What kind of gift is appropriate for the Mom who wants only one thing–the promise of health and happiness for all of her children, and especially the one/s who need a little or a lot of extra help to make that happen?

Maybe all we need for Mother’s Day is a reminder of what we already have, of something we are called on to use all too often. That one thing, that one simple and ultimately essential thing, is courage. As Mothers of children with PWS, we are called on regularly, in big and small ways, to challenge authority, blaze trails, bend rules, and step on toes. We tackle family, friends, and anyone else who, although well-intentioned, just doesn’t have a clue as to what our lives are like and what kind of havoc their actions wreak on our children and our families. Because of PWS, we are hypervigilant about diet, exercise, pain, temperature, growth, behavior, learning, and social development. God help those that get in our way! It’s this level of courage that gets our children the help they need. It’s this level of courage that gets other people to think outside the box, to reject mediocre standards, and to help our children reach their highest potential. It’s this level of courage that will let us continue to reject the inevitable outcomes of PWS that were handed to us along with this diagnosis.

So, on this Mother’s Day and on all Mother’s Days, what I wish for you and what I wish for me, is enough courage to get through each day, enough courage to take on all the challenges of PWS, and enough courage to trust that as Erin and all of our children get older, we will be there smoothing out the rough spots and clearing the path ahead for them. We won’t win every fight. We won’t always make the right choices. We won’t always get what we want or need, but we will always have the courage to TRY. One of my favorite quotes is….

courage does not always roar.

sometimes courage is the quiet voice
at the end of the day saying,
“i will try again tomorrow”
mary anne radmacher

…and that’s enough.

Happy, Happy Mother’s Day to the most courageous group of Moms I’ve ever known. (You Dads are courgeous, too, but it isn’t your day yet! Come back in June! 🙂

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