Good Grief: Five Stages Mom-style
The doctor said, “You will grieve the life you thought he would have.”
Grief, I thought. Huh? My child had been diagnosed with Type 1 diabetes, but he was very much alive and sitting right next to me. Were we grieving a malfunctioning internal organ? I stared blankly at my son’s new pediatric endocrinologist and thought to myself, “Thank you, but I won’t be grieving. His little eyes are watching me for how to respond.” Bypassing denial, anger, bargaining and depression, I jumped straight to acceptance. And while I was standing strong during the immediate crisis, I was naïve to the upcoming loss of normalcy and the permanent state of hyper-vigilance about to swallow our lives.
Many Type 1 warriors (and their parents, counselors and doctors) have written about how Elisabeth Kubler-Ross’ five stages of grief present after a T1D diagnosis. The typical stages, however, didn’t resonate with me. I wasn’t mad. I didn’t try bargaining. And I don’t have time to find out if I’m depressed. My stages included guilt, obsession, and helplessness, and they were on a loop with rejection and acceptance. Some days I visited all five. Other days just one seduced me, and we’d hang out for months.
1 – Rejection
No thank you to the minimum daily prescription of four injections and five bleeding fingers for my child. Unacceptable. Lethal doses of a life-saving medicine in a school backpack? Nope. I am not in denial of the diagnosis, but I do officially reject what it represents. We are living in the 21st century. Certainly a mainstream or alternative treatment exists to make this go away? Googling the cure now. Diet. Nope. Exercise. Nope. Transplant. Nope. Cinnamon. Nope. Okra. Nope. Supplements. Nope. Prayer. Nope.
2 – Guilt
Type 1 diabetes is forever. You have it, and I don’t. I’m so sorry, my love, for all the ways I did this to you. I conceived you with my genetic code, birthed you of Scandinavian ancestry, vaccinated you, did not breastfeed long enough, fed you cheese, ate a mere three strains of probiotics while pregnant, purchased the wrong vitamin D supplement, bathed you too often, let that lady with a cold talk to you, forgot the coconut oil, and never once stood naked and hopping on one foot under a full moon. I will super-parent you all the days of my life in pursuit of mercy because this is my fault.
3 – Obsession
Me versus T1D. I have the answers. No one knows more about managing blood sugar than I do. I will poke your fingers, wipe your blood, weigh your food, give your shots, catch your lows, collect your urine, examine your feet, walk the 5K, visit the new diagnosis, hoard the supplies, pack the bag, train the dog, fight for the technology, educate the ignorant, start the support group, and defeat the forces that would claim your carefree childhood. You, sweet one, shall be my human pin cushion. My self-worth will be determined by the peaks and valleys of your glucose line.
4 – Helplessness
Balanced meal, perfect carb count, impeccable dose timing, fresh insulin, no dessert, uninterrupted routine, expert sleep schedule, sensible exercise program, and impenetrable germ bubble. Check. Wait, what? Why is your blood sugar 300? Why do I suck at this? Are you mad, sad, excited, or scared? Do you have another terrible disease that I don’t know about? I did everything “right” and cannot control your blood sugar. Oh. You are a growing, sentient being, and insulin is not the only hormone in your body. Hour by hour (at least) I take an action to keep you in range, and none of it matters. Your blood sugar is the same whether I do all of the things or some of the things. Someone please help me.
5 – Acceptance
I submit. T1D is a long game. I am not a beta cell, but a loyal understudy. Your body is not my project, and this disease is not our fault. There will be no shame or blame. You have T1D, but it does not have you. We will manage the blood sugar variables that can be controlled, and your strength and resilience will astound us. We will be hopeful advocates. We can walk the line between seeking balance and allowing T1D to consume us. See you again soon, T1D, but make it quick because we’re going to the park. This life is still a good one. Onward.
What are your five stages of grief?
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