Before my son Nicholas was born my life was perfect.
I ran in an invisible race with neighbors and friends, a race to see who had the greenest lawn, the smartest kids, and the whitest teeth. I was a member of an elite group, devoted to raising elite children. We spent our lives at barbeques and soccer games tallying our points in our quest to grab that glittering gold ring of perfection.
As we admired our children and our lawns, we never stopped to realize that on our faces we wore rose-colored glasses and in our hearts we felt an emptiness that searched for a deeper meaning to our lives. On January 18, 2002, like a thin layer of glass, my perfect life came shattering down by the purest sound of six horrifying words:
Your son has Prader-Willi Syndrome.
Suddenly, I could not breathe. I sobbed for my weak, little child. I sobbed for myself. I sobbed for the perfect life we would never have together. There were no flowers, no cards, no congratulatory notes from family and friends. My son entered the world in silence.
Where in a perfect world would this little child fit? It was as if his very existence threatened to tarnish this utopian world we had created. My tiny son was a giant monster of truth that threatened to expose the meaninglessness of a life built out of playing cards. All who lived in these fragile card houses could not understand how to celebrate the birth of this little child.
My son lay limp upon his hospital bed. Feeding machines and IV poles surrounded him like quiet metal soldiers standing at attention. Everywhere alarms sounded, a constant reminder that this was hell and we now lived in it. Around me in the NICU, I saw only despair, parents with children struggling to live.
Like my newly born infant, I was abruptly and cruelly removed from the warmth of my womb-like life. I was thrust headfirst into a cold and terrifying world. This was my new home. I felt sick. I did not want to look around me. For everywhere I looked, I saw only pain. I felt like a soldier on a battlefield, frozen by the ghastly sight of the slain, bloody carcasses at his feet. Yet like this soldier in a war he did not create, I too could not escape my fate.
The rose-colored glasses I once blindly wore were smashed into smithereens. My eyes, unaccustomed to this new light, could not stop crying. In his sad and traumatic entrance into this world, my imperfect son had given me an unwelcome gift, the gift of sight, the ability to see the world not as I wanted it, but as it truly was.
I saw the pain and sadness, the frailty of life.
When my tired body seemed like it could bear no more, my floppy, little child began to get stronger. As he did, I began to feel a lost emotion, happiness.
After almost a year, Nicholas held up his head. That tiny infant who struggled to breathe was now able to see the world. I felt joy. When his g-tube was removed, and the words “failure to thrive” were removed from his chart, there were tears. I felt relieved. When he pushed away his metal walker and took steps for the first time, I wept.
Slowly, I began to realize that these tortuous feelings and hardships were important. These awful extremes of emotion gave my life new meaning. Although these emotions left me feeling fragile and vulnerable, I couldn’t help but wonder if this is God’s intention?
I began to accept that my son is not like others in this world. I began to accept that this is not a curse, but a blessing. To me, my son is unusually happy, loving and kind. I am amazed by his keen perception of human beings and his unique ability to engage even the grumpiest of personalities. He lives to dance and laugh and love. He has a warm heart and a gentle spirit, and although he is my child, he has also been my teacher.
Each of us is blessed with special gifts and although his gifts are hidden, buried beneath a weakened body, his gifts are no less special. I do not have a son who can run very fast. I have a son with the precious gifts of empathy and human compassion.
I now realize that my life with Nicholas will not be like the lives of so many others, ordinary. It is an extraordinary life. A life filled with high highs and low lows. I would not trade one day of feeling that terrible pain because I know now the terrible happiness that is waiting on the other side for me. What I have learned is to appreciate both. For it is these feelings, this blending of the good and bad, that somehow seem to bring me closer to understanding my purpose here on earth. This awareness, this blending of heart and spirit, has helped me to embrace my son and enjoy this journey we are sharing together.
It is a sad, sweet, beautiful trip. It is a life less perfect. It is a life more meaningful.
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