The epidural was a game-changer.
It was the first time in 25 years that I did not feel the throbbing unrelenting pain of arthritis in my lower back.
I wept with joy.
It was the sweetest experience of my life, prior to my daughter Anakha’s birth. The fact that it got rid of those pesky labour pangs, was secondary.
Having had a chronic childhood illness myself has made me unusually prepared to be Anakha’s mother. The routines and rhythms of disability, such as timing daily medications, planning and managing energy outputs, modifying her diet, daily exercises just to be able to move, pain management, the social stigma of using adaptive equipment, and long-term hospital stays, are not foreign to me.
Before she was stricken with this terrible life-limiting illness, I was already worried that she might inherit my form of childhood arthritis. I constantly watched her for signs of joint and muscle pain. I even used to joke that if anyone was prepared to deal with a childhood illness, it was me.
Ah, the irony!
Anakha’s path is so much harder than mine, but I have walked a similar path.
At the age of 10, my back started to hurt. Much as Anakha’s physical regression was at first dismissed, my back pain was chalked up to growing pains.
It was not until I was 22 that a rheumatologist recognized the signs of Juvenile Ankylosing Spondylitis, a form of childhood arthritis that affects all joints, and a few organs.
It can be tiring and painful. Flare-ups come and go. Medication and exercise regimes must be strictly followed to attempt to stave off permanent damage. I spent 2006 walking with a cane, cursing those cold Ottawa winters and slippery sidewalks.
People have made comments about how slowly I may walk at times, especially on the busy streets of Toronto, or wonder why a youngish woman is waiting for the elevator, or wearing ugly orthotic shoes with a beautiful dress.
I know that Anakha and I together will inevitably face similar situations.
Mitochondrial disease exhausts her. A day trip to Niagara Falls can deplete her energy reserves for a week. She has minor and major regressions of skills, or flare-ups, from time to time. Her leg muscles are trapped in spasticity and painful cramping. Her medications and therapy regimes must be strictly followed to give her the best chance at survival and quality of life. She uses several types of specialized equipment for mobility.
People are already commenting on her eye crossing and her limited speech, asking why a 2.5-year-old cannot yet walk. And as she gets older, and spends more time around her peers, the questions, stares, and social stigmatization and isolation of disability will only get worse.
But I persevered. And I am confident that Anakha will do the same. Because no matter what we may face, we will just keep going. Walking and rolling, inch by inch, and with a smile.
Mama can show her how.
The mothers of children with life-threatening illnesses or special needs are inundated with well-meaning parables and poetry, telling us that we are somehow chosen by God (whatever God you may believe in) to walk down this difficult path.
Maybe we are, or maybe it is a random chance, I cannot presume to know.
But I am so glad that she chose me.
- I think I know what Mayim Bialik meant – October 21, 2017
- Charlie Gard, an epilogue – August 12, 2017
- Why Charlie Gard’s life matters – July 8, 2017
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