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.
Focusing on the negative aspects of life always seems to come more naturally than focusing on the positive ones. Whether we like it or not, bad things have a way of taking center stage and eclipsing the good, especially when it’s something significant like becoming progressively disabled.
At 34, I’ve been using a walker for over three years due to degenerating disabilities caused by Friedreich’s ataxia (FA). If I am not intentional about my attitude, FA will eclipse all of the good in my life and begin to define me.
Every day when I wake up, I try my hardest to stay positive and continue living the life I want despite FA. I try to focus on the good instead of the bad.
I was diagnosed four years after I got married. After my husband and I received more information about what pregnancy and motherhood would look like with FA, we decided to continue following our dreams by having children.
I thought I had an idea of what to expect. I believed I had made peace with the notion that motherhood would look different for me. I knew it would be hard, but I now know that nothing could have prepared me for how emotional this journey is.
I was certain that the big things — being unable to play baseball with my son, jump on the trampoline with my daughter, go wakeboarding with my husband, or jog around the neighborhood with my friends — would gut me. Yet while I do mourn for the big things I can no longer do, it’s the simple, everyday things that affect me more.
When our son, Brooks, was 2, we welcomed our daughter, Collins, into the world. At the time, I could still walk unassisted. I could carry her around her room and other short distances, but I didn’t trust my abilities to do much more than that, out of concern for her safety and mine.
About a week after she started walking, I fell and obliterated my ankle, requiring reconstructive surgery that bound me to a wheelchair for eight weeks. After learning how to walk again, I could walk unassisted for a few months.
When our daughter was a few months shy of turning 2, I began using a walker full time. Therefore, all of Collins’ true memories of me are of me and my walker. In her mind, I have always been disabled, so it was an easy reality for her to accept.
Every night when I tuck her in, I end our prayers by asking God to give us “happy, funny, silly dreams about (fill in the blank).” The other night, I prayed for dreams about “Collins, Brooks, all their friends, and Mommy and Daddy jumping on a giant trampoline!”
She answered, “But Mommy, your legs won’t let you jump.” So I told her, “My legs can do whatever you want them to do in your dreams!” Sweetly, she replied, “Well, then I pray for dreams where we go for a walk and you can just hold my hand instead of holding your walker.”
That broke my heart. Here I was thinking that she would be upset about missing out on having a playful mom when she really just wanted something as simple as holding my hand during a walk. If only she knew how desperately I pray for that, too, and how hard I work to make it happen.
I share this story not for pity but for awareness and inspiration. If you can still enjoy simple pleasures, take time to acknowledge and appreciate them. If you find yourself thinking like me, longing for the things you can no longer do, try to look forward to things you can do, even in your current state of disability. I bet you can do more than you are aware of.
I reminded Collins that even though I can’t walk and hold her hand, I can still hold her hand while we say our prayers at night, we can snuggle on the couch, and I can still tickle her, do her hair, and make sweet treats and fun crafts with her.
Although I think that I needed these reminders more than she did, I am thankful I had the opportunity to voice them. It reminded me to not take anything for granted and to think out loud around my children so I can model how to focus on the positive.
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