Around here, there are two types of people—spring folks and fall folks. As an extension of our obsession with the weather, we take our seasons pretty seriously. The two groups can argue non-stop about which of these two times of year reigns supreme. I, a die-hard spring fan, wait impatiently all winter for the torture to be over and for the festivities to begin.
One of my favorite moments during my favorite season is the first time the trees first begin to bud, usually around the first of April. I watch expectantly for the lightest, most delicate of all the shades of green on the new sprouts. When the sunlight is just right, there is a beautiful, green glittering that seems to spread from tree to tree, carrying that delicate shade all through the woods. The energy that I feel from that sight just makes my soul soar, the sight each year being as if I’ve never seen it before. I never get tired of that magical moment.
It’s August now. The trees are still green, but it’s different. After a long, scorching summer, the magical glitter has gone. The leaves are still green, but they lack their sparkle, their energy. They are hanging on, but you can almost feel their fatigue. Wave after wave of heat has taken its toll. Storm after storm has beaten them back and forth, straining their connection to the trunk and the root system that nourishes them. They are still alive, still giving shade, and still green…but they are different.
Early on, when the doctors tell us what it means to have a child with Prader-Willi syndrome, we absorb the blow, react, and, in time, start to move forward. For many of us, we somehow find, in the middle of one of the most painful times of our lives, that jolt of energy that causes us to say, “Bring it on!” We tell our therapists that we will do whatever it takes to avoid the predictions that have been mercilessly listed for our children. We tell our doctors that we will walk through hell and high water to keep PWS from taking over our children’s lives. We announce to the world that we are going to use every resource at our disposal to bring PWS down. We become an unstoppable force with unlimited energy!
Over time, some of our strength begins to fail. Plagued by unending medical crises, relentless behavioral challenges, family struggles, financial losses, and dwindling social support, we fight just to keep our heads above water. We jump whenever the phone rings wondering what bad news this call will bring. We cry when we see our children wrestle with forces that we can’t see and don’t understand. We are heartbroken when we see our children hurt and alone, when they are subtly, and not so subtly, moved to the edge of their social circles as their “differences” become more obvious.
When we take a break from worrying about this, we worry about our other children and our spouses, and how much they can take, about how long our family can survive under these circumstances. Way too often, we look back and remember what our lives were like when our spouses were still with us, or when our other children enjoyed coming home. We need sleep, and sleep doesn’t come.
PWS is always with us. We grow weary. We lose our spring sparkle and our spirits are low. What to do?
Maybe we can take a lesson from the trees. During the spring, the summer, and the fall, trees amaze us with their ability to produce leaves for our viewing pleasure and accompanying shade for our comfort. They quietly work ever so hard to make our lives better and when they have done all they can, they rest. They drop their load of leaves, let the wind and sun surround their branches, and they rest. They don’t stop being trees, but they know that they are in this for the long haul. They have so much work to do over the decades and in order to do that well, they rest. Trees instinctively know to pace themselves so that they can do what trees were designed to do. When that happens, the trees flourish, and those who surround them benefit.
As parents, we don’t get to take a whole season off. We don’t get to drop our children like trees drop their leaves, but we do benefit from taking some time to refresh, to nurture our souls, to renew our focus. It doesn’t happen easily, but, as with all things that are important, it is worth whatever it takes to make this happen. We are in this for the long haul. We have decades to parent our children and we need to build into our care plan for our children some time for caring for ourselves. It doesn’t have to be long, or expensive, or elaborate. Trees are still and quiet through the winter as they renew themselves. Just some time being still and quiet can go a long way toward renewing ourselves. A refreshed, renewed parent is a better parent. A better parent is a great gift to a struggling child.
Look for opportunities today to rest. Look for ways to pace yourself so you, your child, and your entire family will experience life and each other in the most positive ways possible. A little rest will get you back to that time of spring when the green, glittering light of the budding trees energizes you and re-creates that “Bring it on!” spirit.