“I don’t see a way to save him.”
The doctor’s words rang in my ears. The fluorescent lights of the doctor’s office, as garish as the words from his mouth, flashed and faded in front of me, like the candles I was expected to blow out that evening on my birthday cake.
This was no ordinary birthday.
No. Way. To. Save. Him.
My 2-year-old son. The doctor was talking about my bubbly, precocious, laughing 2-year old son that sat in the stroller in front of me. Somehow, I walked out of that office and drove a 3,000-pound vehicle home instead of into a median, but either way, I had felt that my life was over.
In the days and weeks after that doctor told me there was no way to save my son from a terminal condition called Hunter Syndrome, I moved through life as if I, and I alone, existed in a tiny, portable box, a box that shuffled along in slow motion, the sounds and conversations happening around me muffled in my tight, solitary existence. I stood numb in my box.
Hunter Syndrome takes little children, mostly boys, from happy-go-lucky one day to dying the next. Or that’s how it seems. In reality, you receive this horrific diagnosis at 2 years old, maybe 3, maybe 4, and they are the same laughing and running child the day before and the day after, it’s just our knowledge has changed.
In fact, my son was dying since the day he was born. Little bits of cellular waste have been building up in his body, causing his lungs to malfunction (putting him on a ventilator at four hours old, but he was off a week later), causing his heart to malfunction (I just thought he was a calm child), causing his joints to become stiff (I would always walk near him to help him up when he fell), enlarging his liver and spleen (I thought his large belly was so cute), and changing his face to a distinctively “Hunter Syndrome” face (I always thought he was beautiful).
What happened that day was just me knowing he was dying. The weight of having foreknowledge of one’s life, and death, is something most of us wouldn’t want. Or even if we’d want it about ourselves, we probably don’t want it about a loved one, especially our child.
I broke inside, as if a rogue riptide had torn my toddler from my arms. I clawed underwater in slow motion, no ability to breathe, trying to pull his chubby little feet and fingers back to me against a tide that was carrying him further and further out to sea. He laughed, oblivious to the danger.
And still, I had to go about my daily life. Clean my house. Drive a car. Get groceries.
The checkout lady at the grocery store commented about how he looked so strong that he’d probably play football. I slowly nodded my head, having no energy or heart to tell her that he wasn’t expected to live to be a teenager, much less understand the game of football while he was living. He babbled away, smiling beautifully at the cashier. At the time, he could throw a perfect spiral.
I never mentioned that to the cashier. He lost that ability within a year.
I’d wake up in the morning having forgotten that our life was inalterably changed. And then I’d remember the devastating news all over again.
Holding that amount of pain inside was my attempt to steer a world that was spinning out of control. Maybe if I didn’t breath, he wouldn’t die.
But that only lasts so long. I needed to breathe, to exhale some of what was building up in me from hoping and trying to save my son.
I processed my pain by writing. Taking the raw emotions, the rollercoaster ride of diagnosis through experimental treatments, I eventually poured them into a campaign called Project Alive and a song called “Alive” that tells my story of trying to save my son.
That song has now become a finalist in a major songwriting competition. I can only hope that it shares an awareness of our struggle with Hunter Syndrome and supports our efforts to fund a cure so that families don’t have to continue to face this devastation. Check out our music video above, and if you’re so inclined, vote for “Alive” in the Country category here.
— This feed and its contents are the property of The Huffington Post, and use is subject to our terms. It may be used for personal consumption, but may not be distributed on a website.
View full post on Parents – The Huffington Post
#pso #htcs #b4inc