What I see
I see wireless life support. I see thousands of dollars in invasive medical devices that help my child survive a disease we did not cause, could not prevent and cannot cure. I see an insulin pump and a continuous glucose monitor that make an invisible disease visible—technology to manage the disease people are tired of hearing me talk about. Hundreds of small needles replaced by two big ones, but still sharp needles with oppressive deadlines. Every time one needle injects, a grain of sand goes through the hourglass for the next one. I made an organic baby from scratch and now I have a bionic boy. His life is at the mercy of billion-dollar pharmaceutical companies, and my ability to navigate powerful economic systems I can neither accept nor change.
I see red when I poke his finger in his sleep. And when I think about the profit margin of insulin, the lives lost, those who feed stigma with their diabetes punchlines and the long carnival game of even the most promising path to a cure I see the reckless ignorance of comedians and white house officials putting diabetics in a category of people who deserve it. I see a pre-existing condition and a boy who will grow up to bear the full financial and bureaucratic burden of type 1 diabetes, in addition to the physical and emotional toll of a disease that does not sleep. I see a boy who is my whole world, but a mere line item on the spreadsheets of health insurance companies and their agents, politicians and lobbyists.
I see a boy who has to explain, “Yes, I can eat that,” and who will grow stronger advocacy armor throughout his life as he is forced to educate others on his disease. I see a future member of a type 1 community that is both the victim and oppressor of rampant food shaming—a community that subscribes so fervently to our limited personal management choices that we would often rather argue about carb intake and insulin dosing than fight for a cure and walk the tightrope together. I see the inspiration for my (half-joking) pharmacy looting plan in the event of a natural disaster or zombie apocalypse.
I see all the babies of exhausted and frightened parents who become a tribe in this misunderstood life. The lucky ones grow into strong adults who no longer benefit from the grace given to the infants and children with type 1 diabetes. I see the parents of 100 years ago who would sell their souls for the technology we have now. I see a useless pancreas taking up space while I manually pump patented insulin like his life depends on it. I see a stable blood sugar that will shoot north or south at any moment and require a calculus equation. I see love, anger, joy, sadness, hope, despair, control, helplessness, shame and pride … all fighting for the front seat. I see a child whose beta cells tried to take his innocence with them and lost. I see the privilege of health insurance and access to insulin and I feel gratitude.
I see a tiny ambassador who will not allow me or anyone else to define him by this disease and am humbled. I see his strength, charm and courage, and I feel the power of hope and positivity. I see the other half of a lifesaving boy-dog partnership, and that reminds me to believe in miracles. I see through the devices to a perfect little boy right smack in the middle of a secure and wonderful childhood. I see a mighty, perforated body living beyond type 1 diabetes. There are millions like him, but this one is mine.
What he sees
“Whoa Mom, look at my triceps! I look so strong.”