My son is nearly three and loves to cook, especially for friends. It’s not uncommon for him to wake me up in the morning, pull the pillows and blankets off the bed and declare we are having a party. “Mommy get up, get up! Friends are coming! Let’s make muffin cakes.”
With muscles not yet awake, I slump out of bed. He’s hungry for food and knowledge and I’m only hungry for sleep. I take a deep breath realizing cooking this morning will be a messy challenge. Not because he is a toddler but because I am a spastic mom. I have a form of Muscular Dystrophy called Myasthenia Gravis. I got sick at 8 and diagnosed at 18. My arms shake in certain positions, no one to this day, can tell me why. I recently have embraced the term spastic mom to reclaim my identity as a mom with a disability.
I was eating dinner at a party, struggling to get food in my mouth as my child crawled between my legs under the table. The woman sitting at the table began to quiz me.
“What’s wrong with your arms?” She said, pausing looking for an answer.
I didn’t speak. I continued to attempt to eat, hoping I would finish before my son started screaming for attention. I didn’t have time to be the disability educator today. I’m a mom that’s hungry.
“You have Parkinson? My mom does.” I could tell she was hoping for answers, to form a bond with someone who understood what her mom was going through.
“No. My arms just shake in certain positions.” I said between bites of food.
“That must be hard. It must be harder to manage him.” She pointed to my son under the table.
I took a deep breath – preparing myself for one of several possible probing disability-I’m curious about your life mom conversations.
- The Amazing Overcoming Mom: You’re inspiring! You handle so much your health; a child and you actually work! How do you possibly manage your life? I couldn’t do it! How do you keep up with him?
- The Pity Mom: I feel so bad for you. Things must be so hard for you. How do you raise a child and don’t get discouraged?
- Totally Understand your Disability – I understand what you deal with. I have a friend, family member, ex lover, my boss, my college professor, my mail man, the lady that I never talk to down the street, the guy that bags my groceries, what’s her name on TV, that has what you have. You know they took this amazing pill, went to a psychic healer that used crystals, had a diet of only rocks for three weeks, bathed in the waters of Shangri-La and totally felt better. Have you tried that?
- Time for Another Baby: Are you one and done? Do you think you are going to try to have another child? If you say no…. That makes sense. Why not? Did you have trouble getting pregnant, carrying the baby, giving birth? Is it hard for you to manage him? Aren’t you worried that he won’t be well adjusted without a sibling? Won’t he be lonely? What if he doesn’t want to take care of you when he is older? Who will take care of you when you are older?
These conversations didn’t happen. Instead she said, “Wow do they know why?” She looked at me as if she was hoping for an elaborate medical tale. I was not in the mood. My response, “I’m just a spastic mom.” I got up and cleared my plate and got dessert.
I recalled this conversation while making muffins with my son. I remembered that before my son was born I was nervous that I wouldn’t be able to manage certain things. Would I be able burp him? Would I have the strength to carry him? Would I be able to cut his nails? Would I have any trouble dressing him? How would I handle the inevitable physical exhaustion? How would I be able to color in the lines of a coloring book with him? Teach him to tie his shoes? Help him with homework since I can barely write? Would he be sad or mad that I couldn’t do something?
For many of these questions I have found solutions. He also adapted and knew instinctively that mommy was not the one to do certain things, to cut his nails for instance. I had yet to hear him express how he felt about my disability. Did he have a notion of disability, or was I just mom? He had met my other friends with various types of disabilities. He never had the probing questions… “What’s wrong with them?”
As I was scooping the flour into a measuring cup my arm shook and flour flew into the air, decorating the counter and floor. My son with out missing a beat grabbed the measuring cup and said. “Here mommy that is hard for you. Let me help you.” He scooped the flour and dumped it into the bowl. “Here you go, mommy.” He beamed with a proud toddler smile. He was empowered and I was relieved.
Children have the freedom of non-judgment, tell we teach them and socially mold them to think otherwise. Perhaps the things I can’t do allow him to excel and at a skill I would otherwise naturally try to take over, to control, in order to make the day go smoother, life quicker. My disability makes me slow down and that allows him to catch up. What a gift it can be to be a spastic mom.