I was no stranger to T1D when my son was diagnosed with the disease at age five. My sister has been living with T1D since she was sixteen years old, and my brother died as he was being diagnosed with the disease when he was just eight years old. I was born eighteen months after my brother’s death as the replacement for the child my parents had lost. I was born on the shadow side of grief, into a family desperately in need of hope.
When my son was diagnosed with T1D, I instinctively knew I had reached the end of an era and would forever mark time by Before Diagnosis and After Diagnosis. This disease was deeply personal to me, and so, I responded swiftly and deeply to its reappearance in the warp and weft of my family.
I was riddled with anger—at the disease, at God, at the universe. My fear—for my son’s safety and quality of life, and for the health of my other children—threatened to undo me. I discovered I had a deep need for control; yet control was more elusive now than ever before. I struggled with guilt, knowing T1D had passed to my son through me. I found myself experiencing deep jealousy, perhaps for the first time, over everyone whose life seemed easier, sweeter, less complicated than mine. Frequently, in that early season, my jealousy even turned to self-pity. I felt isolated and was constantly exhausted.
I had learned about carb counting and sliding scales for dosing insulin. I learned about the effects of diet, exercise, and illness on blood sugars. I was prepared for how difficult T1D would be on my child, but nowhere in all the training was a forewarning about how hard it would be on me, his caregiver.
What we have been called to as parents of a child with T1D is hard and can leave us physically and emotionally drained.
While it is my son who lives with type 1 diabetes, I discovered the disease also invaded me personally, and hasn’t left any single aspect of my life untouched or unaltered. Refusing to be ignored, it chiseled into the deepest parts of my being, forcing me to dig deeper for strength than I ever needed to before.
T1D also seeped into every pore of my family, as I’m sure it has seeped into yours. It has brought additional challenges to my marriage. It has complicated my relationship with my son, as I struggle with being his mother and caregiver without being a hoverer. The weight of the disease has even affected my other children. Chronic illness is the great disrupter.
Releasing control to gain it
How can we hope to build emotionally healthy families in the midst of all the disruption that accompanies T1D? We must begin deep within ourselves as parents. We begin by recognizing our own pain and attending to it, rather than continuing to brush past it, hoping it will just go away.
Because it won’t.
If we don’t find healing for our unhealthy emotions, the muck will spill over and spiral out to the rest of our family. But, when we begin to tend to our own hearts, we create space for our wounds to heal, allowing the healing to spiral outward until gradually it touches every relationship within the family. Hope and healing begin with us.
The undoing of our captivity to fear and anger, mourning and brokenness, requires the relinquishing of our constant longing to live a different life. An easier life. A life where loving and caregiving don’t hurt quite so much. To move beyond fear we must begin to accept what is. As long as we refuse to accept our new normal, fear will hold us in its grip.
Acceptance allows us to face our fears, and once we face our fears, we can begin to deal with them. In accepting this disease, I acknowledge my son’s vulnerability and also my own.
But acceptance is hard, isn’t it? It requires us to do the difficult work of releasing control. Control is our need to influence and determine the outcomes of all situations affecting our life. Control is our attempt at ordering the world around us, and it’s our insistence that life conform to our view of how things should be. My son’s disease interrupted the carefully ordered world I had envisioned for my family. It shattered my expectations. It took away my control.
And when we lose control, it’s easy for anger to step in and take its place. We don’t like the unsettled feeling of being out of control. We prefer to walk on solid ground, yet this disease demands we embrace the shifting footing of uncertainty. I’ve learned though, that the only way forward is through the crucible of releasing control.To take hold of hope we have to release our lock-fisted grasp on the way we insist things should be. The way things once were.
A new hope can only be birthed out of our willingness to set aside our need for control, and to courageously begin to accept things as they now are.
This essay first appeared in November 2019 on the site BeyondType1 and is a taste of the book I am currently finishing writing for parents of a child with chronic illness. Through narrative and reflection, the book weaves a story of hope amidst the challenges of raising a child with T1D.