There really is no in between. No, I’m not talking about diabetes per se, yes, you either get it as in get diagnosed or you don’t get it and you are not diagnosed, but I mean people either get this disease or they don’t. Most people, even the ones we need to get it, caregivers of our children, endocrinologists, pediatricians, usually don’t get it. They may be knowledgeable about the facts: how to treat highs, how to treat lows, insulin for carbs, but knowledge is a far cry from feeling. I can know a lot of things about a lot of things, but I don’t truly know until I am in them, and they are in me.
Type 1 diabetes is blood glucose, yes. Type 1 diabetes is insulin, yes. Type 1 diabetes is carb counting, yes.
But…
Type 1 diabetes is also pain, yes. Type 1 diabetes is also fear, yes. Type 1 diabetes is also unrelenting, yes. Type 1 diabetes is also exhausting, yes. Yes. Yes. Yes.
As a mom of a son with Type 1 diabetes, I truly get it. I feel the pain that my son feels when he has to check his sugar over 10 times a day. I feel his little fingers as they get calloused and rough at the tender age of 7 because he has to check his sugar to stay alive. I feel my son’s pain when he winces instead of screams because he is so freaking brave when we have to change his insulin pump every 3 days. The pain is there, it does not go away. It can’t, pain and diabetes go hand in hand.
I feel the fear. I feel the fear that my son will not be alive when I check on him in the morning. That’s a fear that cannot be explained or understood unless you live it every day. No mother should wonder if her son will be alive in the morning. I feel the fear when my son is outside playing and I see him hanging upside from the slide as if he has passed out, only to scream, “WHAT ARE YOU DOING!?!?” Just to have said son answer quite simply…”Nothing”. He knows the fear too. He knows he cannot leave the house with fast acting sugar and his meter. He knows it is dangerous for him to be far from another person. He is 7!
I feel the fear of a blood glucose reading of 45. It’s as if a chainsaw murderer is chasing me to my front door and I only have seconds to get the key in the lock so I can be safe inside. When I see a 45 I feel as if I only have seconds to grab that fast acting sugar to ward off a low blood sugar seizure. Who am I to test the fate of a reading of 45?
I feel the unrelenting power of diabetes. There are no sick days, time off, vacation days, holidays, mental health days when dealing with Type 1 diabetes. You are on and working 24 hours a day 7 days week. There is a joke that you can rest when you are dead, well, that’s about right for caring for diabetes. You can stop caring for diabetes when you are dead. Or if you turn it, you can stop caring for your diabetes and you will be dead. Either way, you’re off the hook, but until then, you keep on keeping on. My son is well aware too, birthday parties, water parks, the beach, the pool, Great Adventure, diabetes is there. Uninvited. Unwelcome. Yet, always there.
Exhausting. No, not the “I worked all day on my feet” exhausted. But more like the “I haven’t slept more than 2 hours in row for 3 days because I have to check my son’s sugar every 2 hours” exhausted. That’s an exhausted that many people will never have to know. Exhausting to my son, who is the recipient of all those blood checks. Who would want someone to come into their safe space, their bedroom, and stick a needle in their finger to draw out a tiny droplet of blood? Not I. My son wakes up sometimes more tired than when he went to bed and he has no idea why. He doesn’t wake up with those checks, but I know he knows I’m there. He sticks his tiny finger out when he hears the glucose meter beep. If that doesn’t break your heart…
I get it, I do, and I love the people that get it with me…you know who you are.