Chronic Hope: Raising a Child with Chronic Illness with Grace, Courage, and Love

By Bonnie O’Neil and Gary Scheiner

Chronic Hope helps parents of children living with chronic disease gain practical wisdom for managing the emotional stress of raising a chronically ill child, so they can navigate these challenges with grace, courage, and love.

• Language: English
• Publisher: Open Road Integrated Media
• Release date: Jan 12, 2021
• ISBN: 9781631952296

Book preview

PART ONE

Diagnosis

Chapter One

And Now There Are Three

Hope is definitely not the same thing as optimism. Hope is an orientation of the spirit, an orientation of the heart; it transcends the world that is immediately experienced, and is anchored somewhere beyond its horizons.

—VACLAV HAVEL

Three decades pass and the disease remains underground, stealthy and silent, waiting an opportune moment. I have a family of my own by now, and I share my concerns about this disease with each of my pediatricians. I learn it’s useless to test for type 1 diabetes (T1D) at every appointment; the onset of this disease is generally rapid and unpredictable.

You know the signs, one of my pediatricians had assured me. Just keep watch and you’ll know if there’s a problem.

And so once again I watch, and I wait, and I fool myself into believing that awareness and clean living are any kind of protection against the force of such a mighty illness. I hold my breath, this time hoping against hope that my children will be okay.

The final grains of sand pass through the belly of the hourglass, marking that the time has come. The warning signs appear almost overnight, and deep in my bones I know diabetes has reemerged in the warp and weft of my family. These first moments of realization feel almost sacred, a private intimacy between mother and son, and I am not yet willing to invite a doctor into this space.

I move as if by instinct, without really thinking, and drive to my local pharmacy. There, I purchase a urine test kit, as I have used myself so many times, to test my son’s urine in the privacy of our own home. This disease is deeply personal to me. If there is a diagnosis to be made, it is mine to make.

The hands on the mantel clock barely move as I await the hour to collect Austin from his preschool’s day camp. Yet once I have him safely home with me, I find I cannot bring myself to ask him to come for the urine test. Will he be worried? What if I don’t know how to interpret the results? Am I just overreacting? The soundtrack of my stalling plays over and over in my mind.

The hour hand makes its way a little farther along the dial, and I know I can delay no longer. I decide to make it into a game. Calling Austin down from the playroom, I assure him it will only take a minute.

His eyes twinkle, oh how they twinkle, as he runs down the hall toward me. Always in a hurry, this one.

Once again I long for Time to stand still, but like Austin, even Time is in a hurry today. Only my hand lingers, over the soft blond waves that frame his face.

He fills the cup. I dip the strip. And just like that the test is done. And just like that my heart shatters. Test strips don’t lie—my five-year-old son, Austin, has type 1 diabetes.

Clutching the strip, sickened at the sight of its crimson color, I enter a spinning tunnel. The ground underneath my feet may still be solid, but everything around me is turning at a dizzying pace. Somehow I make my way to the pediatrician’s office to confirm the diagnosis. The disorientation overwhelms me. I just want the swirling to stop. I can’t imagine how I will ever make my way forward, and yet I know I can’t turn back the sands of time.

Your diagnosis story is uniquely your own. Most likely, you didn’t diagnose your child in your first-floor powder room. Chances are your trusted doctor told you, or it was an unknown specialist at a sterile hospital who broke the news to you. Perhaps the diagnosis came when your child was still in utero. Or perhaps it was during your child’s adolescence. Or maybe, like me, your diagnosis story interrupted a life of Legos and fairy tales.

Whenever and however it happened, your diagnosis story contains elements of the sacred as well. The events unfold in an otherworldly reverence. We gather these deeply private moments in the life of our family and hold them close, protecting their memory. We understand that a metamorphosis has begun, even if all we can envision in that season is the death of a