Rare Parenting: The Wheelchair I Needed, That My Family Deserved

By Elizabeth Paddock

Last week we had a new addition to our family. It was kind of a big deal- but in very different ways for each of us and I was reminded once again that sometimes life is best seen though a child’s eyes.

The new addition to our family wasn’t a baby. It wasn’t a new puppy or even a goldfish of the carnival prize variety. No. The new addition to our family was a wheelchair. Two big wheels, two little wheels, and a seat custom fit to my size. A shiny new set of wheels, just for me.

Given my medical conditions, the chair has become a necessity at times. I have Postural Orthostatic Tachycardia Syndrome (POTS), a form of Dysautonomia that means my autonomic nervous system has difficulty regulating my blood pressure and heart rate when I stand. Standing for too long or walking too far can put an excessive strain on my heart as it has to pump double-time just to get enough blood to my head to keep me from passing out. In addition to the POTS, I have a condition called Mast Cell Activation Syndrome (MCAS) and when my body senses a physical stressor, such as the tachycardia caused by standing for too long, it will respond with an allergic reaction. So together, my conditions basically mean that my body thinks it’s allergic to standing up for anything more than a brief period of time or walking anything more than a short distance.

When I finally built up the courage to ask my cardiologist if a prescription for a chair might be in order, she didn’t hesitate at all. An assistive device is meant to give back some of the life a disability has stolen away.

And if sitting meant I could spend more time out and about without triggering my illnesses, it seemed to be a simple solution. Except for me, it wasn’t. It took me six months to find the courage to ask about a chair. I struggled deeply with what it meant on so many levels.   Am I a fraud for using a chair if my legs technically work? Am I ready to make my invisible illness visible for everyone to see? Am I giving up and admitting defeat? Will what is now a temporary solution someday become permanent?

On the day my chair finally arrived, I was keenly aware of how differently my family and I reacted. I was afraid of it. I was scared to sit in it. I was ashamed by its very presence. I eyed it all day, sitting there in the corner of our living room like an uninvited house guest. My life experience brought with it so many negative connotations, so many expectations, so many fears. But my sons? My sons were thrilled! A new adventure! They fought over who got to sit in the chair first. The fought over who got to push it first. They took turns spinning each other in circles, laughing in delight at this newfound freedom of movement. They brought nothing to the experience but curiosity and happiness. To my sons, my chair was delightful!

Later that evening we took my new wheels out for a spin and once again I saw how differently my family and I reacted. I was terrified of what this first trip with my chair meant.

I was fearful of how others would view me or judge me. I was afraid this was the beginning of the end and someday the chair wouldn’t be just for long trips but an everyday necessity.

But my sons? They each grabbed a handle and attempted to push me down the path- neither being able to see where they were steering and giggling like crazy when I clipped a bush or a tree branch due to their poor visibility and lack of a valid driver’s license. The took turns sitting in my lap for a quick ride, grinning like the Cheshire Cat as people stared. They brought no fear, no negativity, no judgement- they loved my new wheels!

We stayed out for nearly three hours that night. More than three times longer than I had been able to be out and about in the last two and a half years. My heart wasn’t racing. My head wasn’t spinning. My lungs weren’t gasping for air.

“Mama, we stayed for so LONG this time!” one of my sons said as we loaded back into the car to head home.

I kissed the top of his sweet little head and looked back at my wheelchair. For the first time, I saw it in a different light. It had given back something that my illness had stolen from me. Time with my sons. Time with my family. Time together that didn’t make me physically ill. At that moment, I decided that maybe I was seeing things all wrong. Maybe I didn’t need to bring any of my life experience or my fear or judgement to this new addition to our family. Maybe it was best to see it through my children’s eyes.

If you tried to look at one aspect of your illness through a child’s eyes, how might your view be different?

About the Author

Elizabeth Paddock is a mother, wife, and writer from southeast Michigan. With a master’s degree in clinical social work, Elizabeth has been a stay-at-home mother of identical twin boys for the last six years which has allowed her to focus on her family and her health. Elizabeth has a primary diagnosis of Mast Cell Activation Disorder along with secondary diagnoses of Postural Orthostatic Tachycardia Syndrome and Joint Hypermobility Syndrome. For more information on mast cell disorders, please visit The Mastocytosis Society at www.tmsforacure.org.