It’s only today, 11 years into my journey as the mother of a disabled child, that I can sit down and write this.
Anger, devastation, and many tears preceded this reflective phase, no doubt. For years, I had simply stopped contemplating. I just accepted his existence as an unquestionable part of my life. Blind, immobile, and mute – that was my baby (Ozzy) and it was my mission to mother him.
But only when I thought I was the giver in this relationship, I realized that he has given me the most important lessons of my life:
I learned to appreciate everything.
At 24, two years into my marriage, I gave birth to a beautiful baby boy — and lost him shortly thereafter to a list of congenital anomalies.
The turmoil began when Ozzy was about 14 weeks old. He couldn’t visually follow anything, and checkups revealed congenital cataracts. But after operating on his eyes, there was no progress with his vision. By the age of 6 months, it was obvious he wasn’t developing as he should. We started the medical search.
He had various scans, tests, and examinations. More anomalies started showing up, and our search turned into one for a diagnosis. Every doctor visit made me anxious and nauseous. Every potential prognosis hardened my insides and made me feel cold and lifeless.
By the time Ozzy turned 1, a genetic disorder was identified. Bottom line, my baby won’t be able to talk, walk, or even see. He will never see my face. And this pained me more than anything.
But amid all the pain, I found myself grateful for the good things that life threw my way. It’s like all my senses have been sharpened. I felt the love of family and friends, and I deeply appreciated the support.
Things such as being able to afford a doctor for my son, in a world where many sadly can’t, meant so much. Even the little gifts had a big effect. And I learned to really see them.
I embraced imperfection.
While most of us have big dreams for our children, I had to accept that my child will never be able to accomplish even the most basic tasks. Here was imperfection right in my face and I loved it. And would spend a big part of my life nurturing it.
As Ozzy grew, his condition became more complicated and his disabilities more debilitating, but he is an invaluable part of my existence.
I also had to accept my vulnerability. I discovered that pain connected me most to others and to myself. It shook the ego and touched the soul. Perfection required so much concealment and pretension. Embracing imperfection was real and soulful.
I learned the future means nothing.
When you have a severely disabled child who is dependent on you for every need, all future scenarios are grim. The possibility of a long life is as daunting as the thought of a potentially short one. Hence you decide to leave the future there — and get on with life.
I refused to look into a prognosis or join groups where I would see how children with the same or similar syndromes have progressed. I take life one day at a time. The future will not have a grip on me — in any way. That was truly liberating.
I realized love can transcend all.
Ozzy has never seen my face. And yet he is still able to recognize me and love me. All his physical disabilities have not stopped him from showing this love.
As early as 5 months old, he would only settle in my arms. Eventually, he smiled whenever he heard my voice or felt my touch. And when he started nursery, he would throw his hands up the minute I approached him at pick-up time, so I would lift him and cuddle.
Today, at 11 years old, he still loves to cuddle, but now he even wraps his arm around my neck, pulling me closer to his beautiful face. His smile lights up the world because it shines with love that’s beyond his physical form.
I learned to love unconditionally.
Finally, there’s the answer to my big question: Why is he here? Obviously, I had to learn a few things. Most importantly, to be able to love unconditionally.
Think of the purest love in your life. It likely still contains some expectation on your part. But with a child like this, you just love — you cannot have any expectations from him.
In fact, my biggest relief came when I gave up hope that things will change. To be more blunt, that he would be fixed, even a little. He didn’t come to be fixed but to be loved.
As for him, when I wonder what he wants, I believe he is here to be alive and happy. Simple as that. And isn’t that why we’re all here, too?
Special children challenge our norms and social conditions, because they exist outside of them. We might think of them as rebellious souls, hoping to remind us that we exist in the first place simply to experience life and happiness.