I am a freelance columnist for Friedreich's Ataxia News. I was recently published on my column, My Darling Disability, and I wanted to share it here, too. You can either read it by following this link, or just keep scrolling below.
I am the proud mother of two darling young children. My son, Brooks, is 8, and my daughter, Collins, is 5. To make December even more magical, they still believe in Santa Claus.
I was recently laughing with a friend as we discussed the ridiculous lengths we have gone to in order to keep our children believing that Santa is a magical elf who lives at the North Pole, making toys and updating his “naughty or nice” list all year long, before flying his magical sleigh around to every kid in the whole world on one night to deliver presents.
Brooks and Collins with Santa and Mrs. Claus. (Courtesy of Kendall Harvey)
My friend made a profound point. She said, “I think we try hard to keep them believing because we want them to be young and believe in magic for as long as possible. We want to protect their innocence and joy from all of the harsh realities of this world for as long as we can.”
How right she is.
They will have to endure a lifetime of the world trying to harden their hearts, squash their optimism, amplify their fears and anxieties, and more. So why not let them be little for as long as possible, and let that littleness include a belief in joy-filled magic?
A unique perspective
My children’s view of the world is different from most because their mom battles disabilities. They don’t know the words “Friedreich’s ataxia” (FA) or the specifics of the disease yet because it’s too much to wrap their young minds around. They just know that my legs don’t work well, my voice is different, I get tired easily and often, and my future will likely always hold mobility aids.
I guess that by withholding the specifics, I am trying to protect their worldview in that aspect, too.
I don’t want them to know that my very DNA, the stuff that makes me who I physically am, is working against me. I don’t want them to think that their bodies will betray them in that way, too. I don’t want them to fear my future. I don’t want them to pity their mother.
I want them to keep believing that if they keep eating well, exercising, learning, playing, helping, and sleeping well, they will live long and happy lives. I want them to believe that they can be active participants in the magic of living.
FA has a unique way of stealing magic. Since FA is primarily diagnosed during adolescence, it has changed the course of so many bright, young lives. It forces patients to grow up quickly in a whole different world from that of their peers.
We discover the meaning of degenerative and progressive in painful and unfair ways. We gain intimate knowledge of the clinical trial process and the frustrating ways of the governing bodies. We learn how to navigate the ever-changing relationship of trust, fear, respect, hatred, and frustration with our bodies.
In short, we learn the power of DNA.
But we also develop resilience, perseverance, and determination. We learn the power of being part of a passionate community, how capable we really are, and how important it is to keep pushing ourselves.
In short, we learn that the magic within us is strong. Together, we will cure Friedreich’s ataxia; we just have to keep believing.
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