Spring is my favorite season. The only problem with spring in Kentucky is that it is way, way too short. On a good year, we usually clock in about 15 minutes of spring. That being the case, we always try to squeeze every droplet of joy out of this brief time. The cold winter is behind us. The sweltering summer is in front. This behooves us to make hay while the sun shines pleasantly, and we do.
This spring, amid all the seasonal activities, I have been plagued by branches from our neighbor’s tree that hang over our deck. I love the shade, and the neighbor, but hate the huge flowers on that tree that shed thousands of tiny petals all over our deck floor, railing and steps. I go out faithfully each morning and sweep, and sweep, and sweep.
One day, as I stood there with my broom in hand, one eyebrow raised and one lowered (my favorite facial sign of disapproval), and a bloodstream with a little extra caffeine, I realized that there was a way around all of this mess. Instead of accepting these thousands of petals as “part of it,” I could cut back those branches so that they didn’t hang over our deck. The tree would be fine. I could put my eyebrows back in place, and life would be good. A few snips later, my problem was solved. I thought back over all the days of sweeping, and grumbling, and wondered why it had taken me so long to come up with a better plan. Time wasted. Energy wasted. Less productivity available for higher priorities.
So often, in the world of PWS, we hear people talk about the various struggles they are going through, and they end up by saying, “Well, that’s just part of it.” A sense of resignation drips from every word in that sentence. This is exactly where research comes in.
Our support of research through FPWR says that it’s NOT alright that my child has PWS. The symptoms that try to thwart so many parts of my child’s life are NOT just “part of it,” but are the enemy that must be stopped. We don’t just wish our children didn’t have to struggle with PWS. We are aggressively working to stop it. We are trimming back the branches on the shedding tree instead of just agreeing to go out every day and sweep and sweep and sweep.
Some would argue that this work is futile. It’s too expensive. The job is too big. It may not benefit our own children at all. As much as we all wish it were different, there may be some truth to that. But even if there is a chance, no matter how small, that we can change the future for our children, and generations of children to come, we have to try. If we can lift even part of this burden from their shoulders and increase the chances that their lives can be fuller and happier, then we have more than enough reason to do everything we can to explore any avenue of research that could help bring down Prader-Willi syndrome.
Lots of opportunities to support research through FPWR are available, ways to help of all sizes and shapes. Take the time today to start thinking about how you can be involved in supporting the work that can permanently trim back the overhanging branches that PWS has brought to your child’s and your family’s life. Contact FPWR (www.fpwr.org) if you need ideas or encouragement. We have plenty of both and we look forward to hearing from you!