I’m often asked, “How do you do it?”
Answering this question is hard for me.
“I don’t know. I am his mother. I just mother him.”
Let’s back up a little.
We sat in silence staring at him. There was nothing left to say.
Running and kicking toys out of his way, he forced himself onto my lap. “I got you, mammy,” he laughed.
Tears were streaming down my face.
“Awww, poor mammy. You okay?”, he asked, crystal blue eyes pierced with concern and stiff, curled fingers patting me on my head.
I couldn’t let him see that I was struggling to breathe.
I quietly nodded, stifling my sobs.
“Here buddy, come over to me.” D. stood up with his arms outstretched.
“Okay Daddy. I love you, mammy.” He swiftly kissed my forehead then ran off to Daddy, singing and dancing.
I couldn’t contain myself trying to keep it together in front of my oldest, almost-six-year-old son, Ethan. Hiding in the bathroom became a pattern I continued for the next eight years. Sitting on the cool floor, I bawled for what felt like hours. I lamented for Ethan. I wailed for his life, for his brother, for D. I wept in my disappointment that all the dreams and hopes I had for my son were dissolving right before me.
I felt incredibly helpless knowing there was nothing I could do to save my son. No one could— not even the doctors.
Progressive. Terminal. No cure. These words swirled through my mind. I would cried and cried until I vomited.
We were informed by a doctor that Ethan had a rare genetic disease called Hunter Syndrome. The diagnosis came two months shy of his sixth birthday. They said that it was possible for him to make it into his late teens but most likely wouldn’t live long enough to experience his 13th birthday. Even if he did, Ethan wouldn’t grow beyond a baby’s mind and body, and he’d lose all his abilities as his functions slowly shut down.
There is no cure.
All we can do is love him for the remainder of his life.
In my mind, I saw my son’s beautiful face smiling with love and affection—then a vision of a grave at his burial would snatch my attention. His sweet little face looked pale and cold, his eyes and mouth were closed shut. That morbid image plays on repeat and sickeningly haunts me till this day.
Locked in a box, hidden in the deepest, darkest corner of my mind, was where I kept all the terrible promises of Hunter syndrome.
I never willingly opened that box until I was forced to this past year.
Ethan is losing his ability to walk now and gets around in a wheelchair. He often forgets his words and stares at me with a blank expression on his face when I ask him what my name is. He greets me with the question, “Who you?” I can remember him saying to me not too long ago, “Your other name is Geraldine.” I can’t deny the vast difference from then and now. Sadly, he can’t eat his favorite foods anymore, and I have to ensure everything he is fed is softened. Using the toilet is no longer an option, so he has reverted to wearing potty training pants.
His natural abilities are being stripped away, and all of the doctors and specialists predictions are regrettably coming true. But thankfully, Ethan’s decline is slowing down due to his treatment plan. The reality is that we’re buying time until a “cure” or a breakthrough emerges in the medical field.
Knowing this doesn’t ease the hardship.
Yet, just when I’m feeling heavyhearted from life, he surprises me. I will never tire of the sound of his laughter. I can tell he still knows who we are although he can’t always articulate it. Recognition will flash across his face, and with a huge grin and wide eyes, he’ll blurt, “Blove,” his version of the word love. I’m amused by his devilment and the fact that he still can’t be trusted, especially among his two younger brothers. This always brings a smile to my face! I have yet to witness any lessening of his sense of danger, but we don’t really feel any loss over this since he never had it to begin with.
One thing he has kept for sure is his affinity for cursing, and it’s damned perfect! If a stranger stares at him, he will roar, “Fug off!” Or “Fug ‘way!” (I’m betting you can guess which “F” word fug equates to!)
After eight years, a medical breakthrough is happening as I write this. But my now 14-year-old son is unlikely to receive its benefits.
Now when D. and I take the time to sit in silence, we can’t help but wonder what life would have been like had Ethan been born later in our marriage. What if somehow I knew beforehand that he’d be born with a fatal condition? How would he be as a typical 14-year-old boy? How will we feel when a cure is finally developed?
There are so many unanswerable questions.
And then there’s that one inevitable looming question that creeps into my mind and heart late at night forcing me to come to terms with my son’s incurable condition. This question sparks my curiosity every time I read another statistic about a child who died in his sleep or struggled to stay alive too fatigued to fight his last chest infection.
When will it be our turn?
I am plagued by this immensely difficult question. We never ask it aloud.
Sometimes life feels like a collision course with no chance, no opportunity to course correct. We can get the best advisors, the best doctors, but the outcome for Ethan is certain. I can see the collision up ahead.
We try not to think about the “what if’s,” but it’s hard not to project.
To me, Ethan isn’t ill. For a child with a terminal illness, he is rarely sick, and this brings me comfort. In the mornings when I wake up, I don’t think of my life as a tragic reality. Of course, I have my downhearted days, but most often I don’t. He doesn’t spend much time in the hospital and is given his treatment once a week by a nurse at our home.
Ethan brims with love and affection. His laugh is something to behold and marvel in, and thoroughly enjoyable! We are so very blessed to hear his laughter continue on.
How does one raise a dying child?
We take each day as it comes. That is the honest truth about how we raise a child like Ethan.
We don’t look too far into the future by imagining our lives a year from now or what our sons will look like as adults. No, instead we smile at strangers and laugh at our kids’ inappropriate behavior especially Ethan’s! Any judgment we feel toward others is replaced by empathy and deep listening. And surprisingly, we’ve all been laughing more.
Life is short. We choose to enjoy our sons and do our best to shield them from the heartbreak we try so desperately to hide. Memories can last a lifetime, and our boys deserve to have happy memories of their brothers and parents.
It may seem hard to understand what it’s like to live in my world, but what I do know is that Ethan has made me a better person, and for this I can never repay him. But knowing Ethan, he wouldn’t have it any other way.
Author: Geraldine Renton
Image: Daria Shevtsova/Unsplash
Apprentice Editor: Sarah Shin; Editor: Renée Picard