When You Act as Life Support for Your Child With Diabetes
I am life support.
Take a moment and ponder the word life support. What images come to mind? What does the term life support mean? Mosby’s Medical Dictionary defines life support as “the use of any therapeutic technique, device, or technology to maintain physical life functions.” Webster’s says “providing support necessary to sustain life, especially: of or relating to a system providing such support, medical life-support equipment,” and the free online medical dictionary defines it as “a spectrum of techniques used to maintain life after the failure of one or more vital organs.”
When asked about life support most people envision a hospital bed with a person attached to monitors, breathing machines, tubes and wires. They imagine solemn faces, from both doctors and family members. Hushed stillness but for the air whooshing in and out from the ventilator, the beep from the heart rate monitor, the alarms from the pulse oximeter and the quiet drip from the IV. This is what I imagine life support looked like. But that was before.
I am life support.
I am the 24 hour a day, seven day a week machine keeping a human alive. When a vital body organ fails death is certain without life support. There are so many things that maintain homeostasis and one vital organ in my child no longer produces one of them, not because of anything she or I did, but it was attacked by her own immune system. She has type 1 diabetes. Insulin is vital for life. It is how our bodies get the energy it needs from the food we consume. Without insulin we die.
Without life support my child would die. Every day I am the doctor, I am the nurse, I am the pharmacist, I am the one making decisions with a drug so powerful that a single drop can take down horse. I am the engineer who programs her machines, I am the one attaching medical devices to her body, I am the technician who reads her reports, I am the dietitian and counselor who insures we get the balance right between drug and nutritional needs. I am the emergency response team when things don’t go as planned, I am so much more. I am there 24 hours a day, seven days a week.
I am the life support system.
I’m tired of being the life support system. It is physically draining, emotionally crushing and very, very lonely. The thought of “what if something happens to me?” is never far from my mind.
I watch my child, who has enough on her plate, just trying to grow and mature in a world that is stacked against her. Even if she did not carry this life-threatening diagnosis around with her, it hurts. She will never be free of life support.
She will be her own life support system. My mind races. Did I prepare her, did I give her the training she needs, is she qualified to act as medical personal? On call 24 hours a day, 7 days a week, 365 days a year and is she ready to carry this weight on her own.
She is her own life support system.