Where do you live?
Do you have any children?
But as the parent of a child diagnosed with PWS, there is one question I do not like to answer.
It is a question comprised of only four words.
A question every parent of every child ever diagnosed with Prader Willi Syndrome will be asked.
The answer to this question will expose the intensity of your child's affliction and define exactly where you are on your journey coping with this bizarre syndrome.
When I hear it, a little piece inside me dies.
"Are you locking yet?"
All children diagnosed with Prader Willi Syndrome will develop an insatiable appetite. For some, this uncontrollable desire to eat occurs within the first few years of life. For others, it is a slow but steady interest in food that builds in intensity over the years until eventually the child is unable to control his eating. In either scenario, the end result is the same, parents must begin to lock their food.
For my son Nicholas, the hunger was like a slow moving hurricane. At first, it was a few light sprinkles, followed by a steady rain, a downpour and eventually...the monsoon.
During his early childhood years, Nicholas was spared from the merciless attack of the constant hunger of this deadly aspect of the syndrome. He was in a way, invisible and safe from the jaws of this voracious animal.
But tales of the incomprehensible struggles of our compatriots moved us. There were descriptions of padlocks drilled into kitchen cabinets and bicycle locks wound around refrigerator door handles. Piles of empty food containers found hidden under beds and heart wrenching stories of the uncontrollable rage of a child who is denied food, screaming from a hunger that is fueled by a ferocious need to eat.
Although Nicholas was not exhibiting this behavior yet, deep down inside I knew it was coming.
For 11 years, I lived with a constant fear, a needling finger of doubt tapping me on my shoulder, taunting me, whispering in my ear...."it's coming"
Every day, I wondered when?
When would my son lose his battle with this ravenous beast?
When would we begin to lock?
During my weekly run to the grocery store, I purchased a large bag of grapes and placed them on the bottom shelf of our refrigerator. I ran upstairs to put away a few supplies. When I returned to our kitchen, there was Nicholas with the refrigerator door open, his hands busily plucking at the bunches of plump fruit.
I stopped short in my tracks, I was speechless and immobile. It was as if I slammed head-first into a concrete wall of a new reality.
For a child without PWS, this raid would seem like typical teen behavior. In fact, had it been Weston pilfering grapes, I would have praised him for choosing such a healthy snack. But this was Nicholas, and this covert act was the first time he helped himself to food in the fridge.
Nicholas was no longer invisible. The beast had found his missing prey.
It was time for us to lock.
I was surprised in my search to find a solution. There were a variety of locks available for purchase online. I bought a simple lock and key mechanism. I realized that as he gets older and hungrier, this may not hold up to his more focused attempts at food seeking. But for now it was a good first step.
It took a few days for the lock to arrive. In that time, I noticed the grapes had completely disappeared. Any reservations I had about locking were quickly dissolved.
When the lock arrived Pete installed it quickly onto our fridge.
The sight of it made me angry.
To me, it was a symbol of hopelessness, a shiny metal reminder of how helpless I was at protecting my son from the torturous hunger that consumes him.
I asked the question that every parent of every child ever diagnosed will ask again and again and again.
In our culture, food is synonymous with love. Holidays, parties and special gatherings are times for over-indulgence, a pouring out of our love for one another. Locking all access to food feels, in a way, like we are denying our son this love, denying him his right to a happy life.
Burning tears blurred my eye sight. I quietly brushed them away as Nicholas came up beside me to inspect Daddy's work.
"What's that Dad?" he asked curiously.
Pete knelt down to speak directly to Nicholas. I was thankful for my husband's bravery.
"Well Nicholas," he explained matter-of-factly, "We need to be sure that no one eats after supper. So we are locking the fridge."
"You are?" he asked.
"Yes," Pete answered.
"Who will have the key?" Nicholas asked and I knew he was worried that perhaps he could find it.
"I will," said Pete.
"Where are you going to put it?"
"In a secret place that only Daddy knows."
"Yes, I am. No one is getting in the fridge all night."
"Oh, thank you!" said Nicholas and he hugged Pete tightly.
Nicholas was visibly relieved, happy I think, to know that he did not have to fight a battle he knew he could not win.
His happy response to our strict food enforcement taught me a valuable lesson.
Sometimes, all I see is his suffering.
I do not see his resilience and his steadfast spirit.
I do not listen to his subtle answers to my difficult questions.
Today he taught me that sometimes simple approaches can solve the most overwhelming challenges.
By locking our food, we alleviated his stress, kept him safe and more importantly respected his need for our assistance.
Perhaps there is no greater love.
For info on our refrigerator lock, go to:
Please forgive me.
We live in Boston,
where folks here are born die-hard Red Sox fans
Lisa Peters writes about family life at www.onalifelessperfect.blogspot.com. Please feel free to come visit us. To learn more about Prader Willi Syndrome or to make a donation, please visit our national organization at www.pwsausa.org.
Thank you for reading.