Rare Parenting: Walking a Fine Line

By Elizabeth Paddock

Lately it feels like being a parent with a rare and chronic illness is a lot like walking a tightrope stretched over the Grand Canyon.

On one side is the safe little bubble I’ve created for myself- a place of relative stability with minimal exposure to environmental and emotional triggers. If I stay inside this little bubble, I can somewhat manage my symptoms. On the other side is life. My sons. My husband. Happiness. Adventure. The life I used to live. We used to travel. We used to go on the most amazing adventures. We’ve spent two summers living in Los Angeles and two months living in New York.

We used to travel the country to see houses designed by Frank Lloyd Wright, paintings by Vincent Van Gogh, and traveling LEGO exhibits. We took our sons to see a rocket launch from inside Mission Control at the Houston Space Center and to ride the street cars in San Francisco.

But now those things seem so far away and my only way to get to them is to walk a very, very fine line. And as it turns out, I’m not so great at tightrope walking.

My illness is triggered by dozens of things. Foods, scents, lights and noise are daily assaults on my mast cells. Simply standing up for too long puts a stress on my heart which in turn triggers my mast cells to degranulate, releasing toxic mediators throughout my body.   In my bubble, I’ve learned to control as many of those things as possible. But my most debilitating trigger is emotion. I am quite literally allergic to my own emotions- allergic the very thing that makes me human. Excitement and anxiety are my worst enemies and even though I spend an exorbitant amount of effort trying not to feel these things, it is simply impossible to be human and entirely without emotion.

This is why my life often lies on the other side of the Grand Canyon. By definition, adventures are exciting. And if you’re doing it right, life is exciting. My husband and sons still get to live exciting lives- and by all means, I want them to. But I’m left to decide which side of the canyon I’m going to stand on. Do I stay in the safety of my protective little bubble and let them go forth without me? Or do I pre-medicate the heck out of myself and give it my best shot, hoping I can stay stable long enough to enjoy the smiles on my sons’ faces for just a little while before my inevitable crash?

When I can, I try to walk that fine line. I have to let go of the reigns and hand everything over to my husband- my Superman- who handles literally everything so I can simply go along for the ride and watch the fun from the sidelines, as stress-free as humanly possible. But no matter how stress free we try to make an adventure, I still manage to slip, fall, and crash.

Every. Single. Time.

This past weekend I spent two out of three nights in stage 3 anaphylaxis- writhing in pain and fear for hours as multiple body systems succumbed to the chemical reactions raging throughout my body- all so I could sit at the bottom of a mountain to catch a quick glimpse of the smiles on my sons’ faces as they skied down, beaming with pride and excitement. In those moments, it all feels worth it. In those moments, I tell myself I’ll endure anything so long as I never miss those smiles. But hours later when I feel like I’m dying and debating if and when it’s time to head to the emergency room, I question my sanity.

Why do I keep trying to cross the Grand Canyon on a fraying tightrope, tip-toeing over a raging river of uncertainty, trying to delay the inevitable tumble? Am I being brave in sacrificing myself, or am I being selfish in that my husband is essentially rendered a single father for hours or days afterwards while I am sick?

I worry more and more these days. Stepping up to the ledge of that great void, knowing I’m already unsteady on my feet, is getting harder and harder to do. But I’m just not ready to give up that life on the other side. I don’t know if I’ll ever be ready or if I’ll ever accept the fact that I will never be who I used to be. I will never be the mother our boys used to have. I’d like to think I’ll always keep testing that rope… that I’ll always keep trying to tiptoe out there so long as it’s still stretched tightly across that vast, empty openness. My illness has stolen so much of me, but the mother in me- that’s just not something I’m willing to let go of, even if holding onto it is the biggest risk I’ll ever take in all my life.

About Elizabeth | 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 writing. She has written for the medical talk show Ask Dr. Nandi as well as the award winning Hollywood Mom Blog and is currently working on her first book about gifted education. 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.