I wish that no one had to understand what it’s like to have a kid with diabetes. I really do. Because that would mean that there would be no kids with diabetes. Maybe some day that will happen, but in the meantime, my challenge is to graciously handle public situations in which people clearly don’t understand.
They don’t understand that my husband wakes up several times a night to monitor TheKid’s blood sugar so that he’ll have a Good Day and be in the best shape possible for school and activities. It’s hard to learn when you have a stomachache because your blood sugar is over 300, or when you’re woozy because it’s 50.
They don’t understand that I obsessively count pump infusion sets (please, God, let there be enough until the insurance company lets us buy more) and insulin bottles and boxes of test strips and ketone test strips and (please, God, let these expire before we have to use them) emergency glucagon kits. (I’ll gladly pay $75 twice a year for the privilege of buying these, God, if you’ll guarantee that I don’t have to use them. Because those are only used in a severe low-blood-sugar crisis.)
They don’t understand that before TheKid leaves for the day, I have already had him test his blood sugar and calibrate his continuous-glucose monitor. I have counted the carbs in his lunch and snack and packed a note with that information in his lunchbox. I have taken inventory of the diabetes supplies and the snack box he carries in his backpack everywhere he goes because that’s not a juice box–that’s something that could save his life.
They don’t understand that during certain times of day I am hyperfocused on the display in my phone that shows his blood sugar, because certain times of day are tougher than others, and I need to be sure he’s OK.
They don’t understand because they don’t have a diabetic under their care.
They don’t understand the time it takes and the money it costs.
They don’t understand the mental energy we expend to keep our son as healthy as he can be.
They don’t understand the tug-of-war we go through with a 14-year-old who just wants to be independent, but who needs us for much more than cash flow and taxi service.
They don’t understand that there is no remission, never mind a cure. It’s just a relentless disease that wears you down with constant maintenance.
They don’t understand. And sometimes that’s the hardest part of all this.
(Title courtesy of Bob Dylan, “The Times They Are A-Changin'”)
And that’s why I love that you share this stuff because otherwise, we just don’t understand the nitty gritty of it.
Thanks, Carolyn. It’s been a little extra gritty these past few days, unfortunately. I needed to get this out of my system before I imploded.
See? Blogging does have value.
So well said, Barbara. Thank you for writing this.
Yes to all of this! We are less than a month in, and getting ready to train for our continuous glucose monitor. It’s hard to explain to teachers why snacks and water have to be in La Princesa’s educational plan, and getting the doctor to fax his new rules for when to give a corrective dose straight to the school. But we will make it by the grace of God, and the wonderful moms in the blogosphere who have traveled the path before us.
Hugs! It’s hard, I’m not going to sugar-coat that. My email address is in the sidebar and if you ever need to vent or ask about stuff, feel free. We are ALL about the CGM. I hope all goes well with your daughter and the school. Summer soon…so you can all get more used to things and have time to really hammer out a good plan. (My son is in 8th grade so I’ll be spending time this summer forging relationships with the nurse and others at his high school.)
Even though my son was diagnosed 16 years ago, I still have the same worries as you! The technology that you have available is so much more advanced than what was available to me. Even modern technology doesn’t cancel our worries for our children. My son is now 21 and I still ask if he’s got a juice in his bag…it doesn’t go away!
Thanks for stopping by! I am seriously grateful for this technology. We only had to work without a CGM for 6 months. And I know–I’ll be worrying forever. A mom’s job doesn’t stop when her kid passes a certain birthday; doubly so when an illness is involved.
I stay at home with my boys now, but I used to work as a nurse in the schools – mainly with students with diabetes. So I just wanted to say that you are such a great mom! Nurses everywhere would love for every parent to be like you, caring as much (sadly, it is not the case at least half of the time). I know it’s such a hard cross, since there is no break whatsoever. God bless you!