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.
Parenting is such a roller coaster. It can thrill and fulfill you, and in the same breath, overwhelm and scare you. Life with kids is full of precious, proud, and funny moments preceded or followed by moments of doubt, worry, research, and planning. It is bittersweet watching your children grow. You miss who they were and stand in awe of who they’re becoming.
As someone disabled by Friedreich’s ataxia (FA), I experience all of those universal parental emotions as well as the unique (and frankly, ugly and unwelcome) emotions of jealousy, heartbreak, and envy.
I was diagnosed with FA in 2013, and my husband, Kyle, and I had our son, Brooks, in 2014. At that time, my symptoms hadn’t progressed too severely yet, and I was still relatively “normal.” I was able to carry Brooks around the house. I was able to play hide-and-seek, follow him on all types of terrain, and play easily with him. I even went onto the field and helped coach him during his first season of T-ball.
We welcomed our daughter, Collins, in 2017. At that point, I had to take more precautions and was overall less able. I could hide my progressing disability by sitting on the sidelines and caring for Collins while watching my active 4-year-old son participate in his life. However, this is when jealousy began to rear its ugly head.
I wished that Kyle would spend time sidelined with Collins while I ran around with Brooks playing baseball and having water balloon fights. I actually got jealous of him carrying Collins to change her diaper when we were in public and I couldn’t do it. I was jealous that he was the fun playmate and I was the bystander.
We used to joke that “in this phase of his childhood, Brooks was Kyle’s kid, but at least I still had my baby.” But my baby outgrew my progressively limited abilities. The feelings became darker and more exaggerated as Collins got older and no longer sat in my lap 24/7. Once she began toddling around and exploring her newfound freedom, I was no longer able to meet all of her needs.
Collins used to be my partner on the sidelines, and now I’m sidelined for all of the action in her life, too. I sit and watch Kyle spot her during “Mommy & Me” gymnastics class. I hand her over to my friends who hike the trails with her while I sit and wait for their return during Girl Scouts. I watch my mom chase her to and from the playscape and the bleachers during Brooks’ baseball games. I stand helplessly by when she falls and gets hurt and someone rushes her to me.
The envy I feel for all of the wonderful and kind able-bodied people who help fill in my parenting gaps is soul-crushing. The pride I feel when I watch Collins master a new skill in gymnastics or bravely conquer a new apparatus on the playground is always tainted with jealousy. It is so embarrassing to be jealous of a 3-year-old.
Because my symptoms have progressed to the point that I am 100% dependent on a walking aid, my disability is on full display. I am forced to sit on the sidelines while others take care of my children more often than not. And while that breaks my heart, I am also so humbled and grateful for the help.
I am thankful for my walker that helps me safely get to and from where I need to be. I am thankful that Kyle has the energy and capacity to play the roles of mom, dad, coach, and playmate. I am thankful that my parents live in my neighborhood and have a fantastic relationship with my children. I am thankful for my children’s awareness that there are many things I cannot do, and for their graceful acceptance.
Yes, I wish that my ability to be the mom I want to be wasn’t hindered by my disability. But FA has forced me to find new, creative, and special ways to be an active participant in my kids’ lives. And I have an incredible village that fills in the gaps.
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