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.
Friedreich’s ataxia (FA) has changed so much about who I am. The physical effects have changed how I think, act, feel, and relate. Some of the changes are good, some are bad, and others are just complicated and hard. My parenting abilities have changed in all of the above ways.
One of the blessings of parenting with FA is that I am forced to be intentional with my time. If I want to spend time with my kids, I need to take care of monotonous tasks, which can take my time and attention away from them, when they are either sleeping, at school, or entertaining themselves. That way, I can simply be with them the rest of the time without having to multitask or feel guilty about what I’ve left incomplete.
The other blessing that has come out of parenting with FA is witnessing the development of my kids’ empathy and compassion — or “others awareness,” as I like to call it. They notice small opportunities to be helpful, they can tell when I’m frustrated about my inabilities, and most important, they are caring friends. All of this has made me more empathetic, compassionate, and aware, too. In other words, feelings are a big deal in our house.
One of the bad, complicated, and hard changes that has affected my overall happiness and feeling of being “a good mom” is that I don’t know how to play with my kids at this stage of my FA.
When my kids were little, they were happy just sitting on the ground in the playroom, goofing off all day. They’re now 7 and 5, and their idea of playing is physical. They want to practice baseball, jump on the trampoline, have cannonball contests, chase each other during Nerf gunfights, and go on big adventures. I can’t do any of that, so basically, everything they enjoy doing right now forces me to be a sideline spectator.
While I try my best to be an active and involved spectator, I can’t help the feelings that come with being forced into that role. I become bitter and angry that I can’t play with them the way I want to because of my disabilities. I get jealous of the parents who can get out there and mix it up with their kids. I get frustrated seeing parents who could actively participate but choose not to.
My son goes from school to lacrosse or baseball practice, knocks out his homework, eats dinner, showers, and goes to bed. I get such a limited amount of time with him during the week, and I don’t know how to spend it playing with him. Meanwhile, my daughter is in her last month of preschool, and I’m pouting because I don’t know how to play with her on the days when she is home.
I get wrapped up in these thoughts, and it puts me in a funk that I can’t easily shake. Lately, I’ve felt like I’m missing their childhood trying to figure everything out. I worry about how these changes in my personality and my level of involvement in their lives will affect our relationship. Will they recognize that FA is the root cause and resent it, or will they just resent me? Will I figure it out in time to play with them while they are still kids who want and need their mom?
As I head into my eighth Mother’s Day weekend, I am wrestling with all of this. One thing I know for sure is that I am meant to be Mom to my two kids, and they were meant to have me as a mom, FA and all. We will figure out a way to play and be happy together because our relationship is intentional and has a purpose. I look forward to uncovering that purpose and answering those questions, together.
“And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them.” — Romans 8:28 (NLT)
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