Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 14, diagnosed with Prader-Willi Syndrome and Weston 17, diagnosed with Autism/Asperger's/ADHD. It's the ups, the downs, the joys, the sorrows and most importantly, the beauty of living a life less perfect, a life more meaningful.




Thursday, March 17, 2011

Mummy, Can You Fix It?

"Mummy, can you fix it?" Nicholas asked.

It was the one question I had waited nine years to answer.

"No, Nicholas, I can't." I said as the tears poured from my eyes in long, salty streams.

I cannot stop his hunger.

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.

There were back braces to treat his scoliosis, glasses to correct his vision. We purchased orthotics to correct his foot positioning and had surgery to bring down his undescended testicles. We gave him nightly injections of growth hormones to help him grow taller and increase his muscle mass. When he was diagnosed with fearsome seizures, we began several medication trials that seemed to help reduce the frequency of events and improve his speech and cognitive functioning. There were tonsillectomies and EKG's and although these procedures were scary and stressful, they were welcomed and blessed opportunities that improved the health of my helpless young son. We fixed many of my son's medical challenges and realized there was always that shinning hope.

But underneath my constant crusading, and despite Nicholas's amazing progress, I hid an overwhelming fear. When it came to thinking about Nicholas's future, I had started to lose that precious hope. 

Every time my son reached for food my heart stopped. I began asking the "all too familiar" questions. Questions I asked every day of my life. Was this it? Is the uncontrollable food-seeking stage starting? How bad is it going to be? Can I handle this? Who will my son eventually be? Will he become a monster? Will I still love him?

I heard the horrific true accounts of individuals diagnosed with PWS foraging through garbage cans and smashing windows searching for food. I have seen the videos of enraged individuals kicking and scratching their loved ones desperately trying to get to more food. I have heard heartbroken mothers tell stories of how their precious children have died suddenly from one incident where food access was momentarily overlooked.

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 stop for a moment and think about his question. What will happen when he's older? Why does the future seem so very bad? Why had I lost my hope? Certainly we have seen so much development in the area of genetics. Scientists are in a mad race to identify genes and how they work. With this research isn't there a very real possibility that if the genes are identified, then an appropriate drug treatment can be found? Will this happen in Nicholas's lifetime? There is certainly a very good possibility.

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.

"Yes, Nicholas," I answered, "There is always hope."

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.