"Mummy, can you fix it?" Nicholas asked.
There are many issues that effect the health of a child born with Prader Willi Syndrome. They can suffer from things like: scoliosis, strabismus, feeding difficulties, hypothyroidism, seizures, undescended testicles, hip dysplasia, diminished pain sensations, poor temperature regulation cognitive, motor, speech and behavioral difficulties. My son Nicholas suffers from them all.
When Nicholas was born with this horrible disease, a new life's path was set before me, an all-consuming journey devoted entirely to fixing my son.
My new job was exhausting. It was endless. In my efforts to fix my son, I was slammed with nonstop doctor appointments and therapist evaluations. There were endless tests and medical procedures. I was introduced to intimidating medical equipment that required my proficiency. I questioned my strength. Could I do this job? Was I brave enough? Did I have enough stamina? Would it ever get easier?
But soon, I acclimated to this hectic new lifestyle. With each doctor visit or therapy session, my son began making progress. Each day he seemed to get stronger. Each day he seemed to improve and the milestones that, at first, seemed so far away, were now getting closer. My son's challenges could be fixed. There was hope.
My hope was replaced with an overwhelming fear of the future.
I was afraid because there are no treatment options that will control the hunger of individuals diagnosed with PWS. There are no medications, no therapy tools available to help our children control this unstoppable drive. My son's life will depend entirely on me and how successful I am at hiding, locking and controlling all of the food access in his life, for the rest of his life.
So, when Nicholas asked me if I could fix his uncontrollable hunger, for the first time in his life, I had to tell him an awful truth. I had to tell him I could not stop the pain of his hunger. For the first time in his life, I couldn't fix it.
"No, Nicholas, I can't."
"But there are other things we all can do to help you." I explained.
"We can lock up the cabinets so that only Mummy gives you food."
"That's a good idea." Nicholas says and I am relieved that this is as far as it goes for now.
"How about when I'm older?" he asks. "Will I be able to unlock the pantry? Will I stop being hungry?"
I realize that there is no certainty what any life will look like in the future. The only thing that is certain is that my son has hope, and as his mother, my journey with him will always be to keep that hope alive, to continue to hope and live and love and learn.
He smiled at me relieved, I think, that he saw the familiar light of hope return to my eyes.
"Oh, thank you Mummy", he said, as if I had given him the greatest gift.