“I would like to beg you…to have patience with everything that is unsolved in your heart and to try to cherish the questions themselves like closed rooms and like books written in a very strange tongue. Do not search now for the answers, which cannot be given you because you could not live them. It is a matter of living everything. Live the questions now. Perhaps you will then gradually, without noticing it, one distant day live right into the answer.” – Rainer Maria Rilke, Letters to the Young Poet
Today was the Prader-Willi Clinic at Children’s Hospital. I have had the date marked on my calendar since before we left the NICU and have been counting down to its arrival with equal parts fear and excitement. PWS is partially so intimidating to me because I am so unfamiliar with it…I had never even heard of the diagnosis until we were considering at as a potential one for Eliza. So a part of me was eager to finally be in a room with specialists who were familiar with PWS kids and to meet other families on their own journeys with the syndrome. But then there was the part of me that dreaded hearing about all the risks and potential struggles. And there was the part of me that was afraid to meet older kids with PWS…I was afraid that doing so would be like watching the movie version of a favorite book and losing the imagined characters in my mind’s eye to the theatrical cast. I didn’t want to have expectations – good or bad – around what to expect with Eliza at two, at ten, or at twenty.
After more than four exhausting hours with seven doctors and therapists, the official clinic was done. We fought the urge to retreat back to the safety and predictability of our home and headed up to the luncheon sponsored by the PWS association. I am so glad we did! The families we met were warm, honest, funny, and so friendly! I found there was a common thread in those first terrifying experiences after the diagnosis was made, scouring the Internet or resource books and finding mostly doomsday warnings. There was a bond in the sharing! And there was a hope in the eyes of each child…children sitting contentedly around a table filled with food. It was far from the image I had feared after reading about locked cabinets and morbid obesity.
I still have questions. Lots of questions. Will Eliza respond well to growth hormone? Will she be able to integrate in a classroom with her “typical” peers? Will she learn to drive? Go to a dance? Go to college? Control her eating? Will she be happy? And despite their expertise, I don’t know that the team of medical specialists I met today can ever answer them. But I don’t know that I want them to either. Because like anything, the beauty is not in the answer but in the seeking….not in the destination, but in the journey. I am trying to live the questions…to cherish them and have patience with everything that is unsolved in my heart, trusting that I will someday live right into an answer more perfectly wondrous and beautiful than I could have imagined myself.