I planned to post about signs and DKA today, but I read this post on a closed FB group for parents of T1 children, and it brought tears to my eyes. I don't often cry over T1 diabetes, because I have to be strong - for me and for my daughter. It was so beautifully written - I truly could not have written anything better. So, today's blog post is brought to you by Michell Daley Cheney.
I want you to know I never intended to be an all-diabetes, all the time channel. I get it, it’s all I talk about. I wish I didn’t have to.
I want you to know about this disease that has no cure and gets little to no media attention. Even the President makes diabetes jokes. That which puts us at risk is a joke to the public.
I want you to know, but I don’t want you to know firsthand.
I don’t want you to know what it feels like to be told your child has a disease that could kill them if you stop being vigilant for a while, if you forget to pick up a prescription, if mom and dad both gave insulin by accident trying to help one another, if their body decides to work just a little in the middle of the night, if you don’t do that 3am check. If you are too tired. And we are. We all are too tired.
I don’t want you to know what it feels like to hold your 3-year-old down while they scream so you can give them another shot, five times a day, or whenever they eat something. If they sneak a cookie, you will have to give them another shot, and they will feel punished for eating. Every time. Every day.
What it feels like to have your little one refuse to give you their tiny hand because they are afraid you will stick a needle into it like you do ten times a day. What it feels like the day they become resigned to this, and just hold out their hand without looking at you, like a broken little prisoner of this condition.
What it felt like last night when I woke my daughter up, trying to sneak one needle out and another into her little body, because even a pump needs to be changed every 2-3 days, and that is a needle too. When she told us she can’t do it anymore, and begged us not to “do the sharp thing” again. When I told her that we had no choice, and that I had to stick her yet again, and that it wasn’t stopping. Not soon. Maybe not ever. Probably for the rest of her life, because a cure has been promised for 30 plus years and yet here we are, making scar tissue on my 4-year-old’s backside at an alarming rate. What it felt like to lie with her in her bed and cry, while she told me, “Mommy, it’s ok, I love you.”
I don’t want you to know what it feels like when once in a while I take all of the life-saving equipment off of my little girl, and I hold her little body tight, and cry because I get to touch her without worrying about ripping things out of her skin by accident, for an hour. But just an hour, because I have to put it back in. I have to.
I don’t want you to know how agonizing it is to bathe her and take in all the holes that I have put in her skin in our efforts to keep her safe, and to know eventually I will have to start putting holes in new areas so the old ones can heal better.
I don’t want you to know.
But I do.
I want you to know because I didn’t know how serious it was til it hit me. And I realized that you didn’t understand, and I want you to. Not for pity. Never for pity. For understanding. For support. To get the word out, to make clear how serious this is.
I want you to know so your kids will be kind to ours, and as teenagers they will choose to treat their condition instead of risking their own lives to avoid the ridicule of their peers.
I want you to know because even health professionals don’t know, and the risks are constant.
So when we are voting for leaders, we think about who might help divert funds and research to save these little lives, and the ones of people who have lived with diabetes for far too long.
I want you to know so that we all know the signs, and no more lives are lost to confusion and misinformation, so the ridiculously inexpensive tests are done as a matter of course.
So when people are deciding to give to a charity, they might just choose our little kids once in a while and not think of this as a joke.
I want you to know through me so attention is paid to this disease, so we have a chance for a cure. So no one else has to know firsthand.