As we reflect on the last year, I have a question for you. Have you ever had a moment of all-consuming grief when you envisioned running full speed down a long empty road, arms and face raised toward the sky, screaming into a resounding silence? I have. Why? Because my family was suddenly dropped into a frightening world with no escape. The ground beneath us just disappeared one day, with no goodbye to our old life. Grief stricken, overwhelmed and afraid, we felt so alone in our scary new world. Its name is type 1 diabetes (T1).
It’s nearing two years since our now seven-year-old son Casey was diagnosed with T1. I have discovered since then that we are not alone. I had not realized how many other families are confronting a chronic life-altering disease. Moreover, it’s common to enter the world of T1 in the traumatic way we did: a trip to the ER with our child in life-threatening diabetic ketoacidosis (DKA). The fragility of life was palpable. Like other T1 families, we soon realized that T1 will always make it so. Worse, we realized how unprepared we were for this tricky 24-7 job, but one we absolutely must do anyway—and immediately. Like other T1 parents, I knew I had to dig deep to find the strength to do it. The challenge changes you.
You have to continuously monitor your child’s blood glucose (BG), as does anyone with T1. All else depends on it. It’s a lot like monitoring a loved one’s vital signs at the hospital, because alarms can suddenly sound, demanding quick corrective action. The goal with T1 is to keep BG in the normal range, neither too high (hyperglycemia) nor too low (hypoglycemia) but, failing that, to act quickly to correct any extreme high or low. Both can kill if they persist, so the alarms keep blaring until BG is returned to normal. Lows can kill within hours by starving the brain of glucose, its only source of energy. Years of uncontrolled highs typically lead to complications that reduce length and quality of life, including cardiovascular disease, kidney disease, peripheral neuropathy, blindness and limb amputation.
Newly diagnosed patients and families get little training and must learn how to control BG mostly on their own through trial and error. It’s all the harder because you are often confronting unexpected situations, and BG can seem so uncontrollable even in routine ones. You live with fear, distress and exhaustion but can’t ever quit, or even take a day off. Like other parents of type 1 children, I find the strength to persevere because I must.
Casey will have to live with what I only help manage now. I still remember when we told him he has a condition called type 1 diabetes, which we hope someday will have a cure. My husband Sam explained that he would forever have to use insulin to live and eat. Casey’s sweet five-year-old face took it all in from his hospital bed, and he simply said, “OK.” He didn’t cry. He remained calm. He even took all the needles in stride. He accepted the diagnosis like the innocent warrior he was. After almost two years he is no longer so innocent to T1’s demands, but has taken considerable control of his own care for such a young child.
Type 1 diabetes necessitates major life changes, from monitoring BG without fail, to losing the freedom to eat, sleep, do anything or go anywhere without a second thought. I can’t say I accept Casey’s new reality because I’ll always advocate for a cure, but I acknowledge it’s a permanent part of our lives until then. T1 is that unwanted seventh wheel in our close-knit family of six, following us everywhere, requiring constant attention. We find ourselves still mourning sometimes. The strange part about grief is that it emerges during both happy and hard times. It rises like a tsunami, without much warning, looming, large and all consuming. Holidays, parties, play dates, outings of any type, insurance battles, illness, sudden problems can all cause a person’s armor to crack. The happy times because they come with strings attached and a lack of normalcy. The difficult times because they ask you to pull even more strength from somewhere deep inside.
We aren’t alone in the T1 world. Others have helped us, and I seek to help others in turn by writing about our experiences. Giving and getting support helps T1 families prevail against this unwavering disease. They rise above it to still find joy. They pursue their goals. At the end of the day, however, their loved one is still battling a difficult, lifelong disease. If we don’t take moments to grieve, it’s harder to keep going. But after we wipe away our tears, we see a new version of ourselves looking back in the mirror. We are living in a world we neither expected nor ever would want, but are doing more than just surviving the obstacles. We are families fortifying each other’s strengths and engaging this battle together.
Families living with a chronic disease must praise themselves for how far they have come since their diagnosis. We triumph despite our cracked armor. So, as we enter the New Year, let us take off full speed, together, down that long road, arms and faces turned toward the sky and pierce the silence with our battle cry. May you all have a happy, healthy and triumphant New Year.
Lisa Seitles
Hammonton
Lisa Seitles and her husband Sam are the owners of READ Preschool and Camp Tuscaloosa. They have four children and are active members of the community.