I was normal once.
I was the overachiever working mom who cooked, cleaned, ran errands, entertained my daughter, improved the house, AND exercised. All in one day. I was stubbornly active and only felt accomplished if I ended the day with sore muscles. I did things, I was a doer. And life felt so good.
The headaches started, then the fatigue. I couldn’t go outside on warm days and was inexplicably stopped in my tracks midway through a project. My spirit crumbled as more symptoms set in… pain, dizziness, severe brain fog, a tremor while walking… and the appointments to a dozen different specialists filled my calendar.
In short, I am allergic to gravity and produce too much adrenaline. (If you’re curious, I have Hyper-Adrenergic Postural Orthostatic Tachycardia Syndrome or Hyper-POTS.) There is no cure (yet), just a vast array of drugs to try as a guinea pig until something perhaps sticks. This became my new normal whether I wanted it or not.
The blissful buffer.
My four-year-old daughter barely noticed that anything was different. She kept on growing and blossoming even though I couldn’t go on walks or play in the yard with her anymore. As long as she could keep playing with her friends at daycare and follow them to 4K in the fall, all was good in her world. Little kids are malleable like that.
Even if she didn’t see the difference, I was not going to be a sideline mom; I refused to be left behind. So in a stand of defiance, I invested in a mobility scooter.
At 26 years old, I became a mom on a scooter.
There is absolutely no manual on how to do this, by the way. It was simultaneously the greatest enabling device and the worst humiliating shame. I’ve since learned to ignore the bewildered and borderline offended stares of passersby and instead watch out for everyone running into me. (Being lower than average eye-level makes me invisible. Try it out sometime, it’s a bizarre phenomenon.)
My daughter kept on loving life and easily adapted to living with the scooter. She was downright delighted when I’d use it because there were good chances I scoop her up and let her ride on my lap. (This made her the envy of any nearby kids!!) She even made a picture of me on the scooter in her 4K Mother’s Day presentation!
My now-eight-year-old seems to embrace our life, but I don’t think we’ve sat and specifically talked about disability.
I was curious… what does she think about all of this?
What would you say my illness is? Describe it to a friend.
- [Mom] basically has to sleep all day. She can go to a lot of things but she needs her scooter.
Why do I need the scooter?
- [Mom’s] legs get tired a lot of the time – that’s why she needs rest, to energize them. Then she can walk a little bit sometimes. But only a little bit, so the scooter helps her “walk”. (I’m told the quotes were important.)
Do your friends ask about it?
- Yeah, they basically just whisper it to me… “Hey, why does your mom need that wheel-thingy?” (They don’t know what to call it.)
What do you think about it?
- [Smiles] I like it. And I like thinking if your scooter runs out of battery, I’d push you. (This has happened once.)
Does it ever feel weird?
- For what?
Having the scooter around?
- Well, we basically stand out in a crowd. … Here’s what I think – Your purple hair would stand out more than the scooter.
[I smile] That’s pretty cool that you think that. Sometimes I get very self-conscious about it.
- Which means that since your purple hair doesn’t stand out a lot, your scooter doesn’t stand out one single bit.
Does it bother you that other parents don’t use a scooter?
- Nope, it doesn’t bother me.
Do you think it’s helped you at all, such as with understanding other people?
- Yeah definitely! Because everyone’s unique and I really, really like your really uniqueness!
What do you think your brother will think about it as he gets older?
- He will probably be very talkative!! [proceeds to list a million questions, ending in brother wondering why he has an early bedtime.]
Do you think I’ll always need it?
- Yeah, probably.
And that’d be ok?
Maybe someday I won’t need it and could go on walks with you guys.
- Yeah, and maybe someday I won’t need glasses! (She proceeds to list all the inconveniences of glasses.)
What do you think about me staying home and not working [as a pastry chef]?
- Well, I would like some cakes… and cupcakes… and to stay in Milwaukee… and I miss the rainbow sprinkles in the big container we would buy at the cake store.
The onset of a chronic illness shook up everything I knew about how to live life… disability had never been on my radar. But it turns out, I just needed a new set of shades and a little perspective. As she clearly demonstrates, this difference is not worth getting upset over. My overwhelming life event became a fun new way to do things, thanks to kid vision.
Kids are incredibly resilient and imaginative. Focus on showing them positivity and they’ll share their rose-colored vision with you. Plus, this new challenge could be a wonderful thing… My daughter’s rosy perspective helped to normalize disability – a beautiful quality she will carry with her throughout life.