When my son was diagnosed, other than losing my grandmother, it was the worst day of my life. My little boy, who was so funny and outgoing, and so full of life, would be thrown onto a new path and forced into a life he didn’t want. Heart. Shattered.
But not only was he thrust into this life, we all were. His parents. His siblings. His friends (and their parents). His grandparents. His aunts and uncles. His teachers. His future girlfriends/wife. His future classmates. His future employers. People he has never met before are already impacted by this.
Would we change our path if we could? No question about it!! But alas, his pancreas is gonna be a useless piece of shit forever now, so this is where we live. And this is where we deal.
I keep saying “we”, as this is one hell of a team effort. My husband and I do the brunt of the work, but no one – NO ONE – does as much as our son! I’ll touch on that more in a bit.
My husband and I are the ones who plan all of his meals, his snacks, his injection points; determine his carb to insulin ratios, how much long-lasting insulin to give; who hound him to drink lots of water; who make sure he gets lots of sleep and exercise; who deal with the random highs and sporadic lows. We are his first line of defense.
Our other two boys help a lot. They help to put his lunches together, help to organize our pantry (which is a finely tuned machine on its own, with all of the food in it stacked in clear order, with the carb count written on top in sharpie) Our 4 year old hugs our DiaBadAss every time he has needles. And we play a game at mealtimes to see who can guess the closest to his blood sugar. It helps us all learn how he acts at different levels, and it helps him to learn how he feels at different levels. Plus, making it like a game takes some of the blah out of it.
Here’s a “day in the life of” to show that we may make it look easy, but that is only because I am borderline OCD and am slightly Type A, and we work well together as a team. It doesn’t look easy because it is easy! Do not ever for a second think this is easy. We just deal a lot better than most:
On a regular (school) day, my son wakes up around 7:10, does the normal morning stuff and comes for breakfast. There, instead of sitting down and eating like most people are accustomed, he washes his hands, gets his kits and sits at the table. He then takes a strip out and gets his meter ready. Then he takes his lancing device, and patiently blows a small hole into his sensitive finger tip. He gently squeezes, wipes that drop off, and squeezes out a fresh drop, which he then gently places onto his ready test strip. While waiting for that number to appear, which will dictate the dose of fast-acting insulin he will have at that meal, he wipes his finger clean and gets his insulin pens out. Once the number comes up, we then begin determining the carb count for his breakfast, and using the blood sugar we just learned, and using his carb to insulin ratio for breakfast (and it’s different for all 3 meals in the day – something we had to painstakingly determine through trial and error) we figure out how much NovoRapid he will be taking. He then dials 2 units, shoots it into the lid, then dials in how many units he needs for breakfast (usually 4 units). Then he sticks that tiny needle into his tiny belly, and counts to 10, while the life-preserving smelly as hell insulin shoots into his non-existent fat (he has to pinch skin to create “fat” to inject into). Then once that needle is done, he gets his long-acting insulin ready to go. This one isn’t based on carbs, it’s an insulin he only takes once a day, and it lasts 24 hours (so they say). He primes this the same way, but through trial and error and what seems like a constant change in need, he takes the dose that we have determined is his “basal” need for the day. (It started out as 7 when he was first diagnosed, but over the course of 9 months, it’s increased to 14. That’s not to say it won’t decrease once school starts again, as being at school, he’s more active, but for now, it’s 14). He picks another spot on his poor needle torn belly, and sticks yet another needle into his pinched flesh. And only then, can he begin to eat his breakfast. Then we pack his lunch and snacks for the day, all the while counting his carbs, and writing everything down in his food log (including blood sugar tests and how much of each insulin he takes). Snack time rolls around at school, and he tests, texts me his number, and we determine if he can eat the snack was packed, or needs to replace it with a “free snack”(which we also pack, just in case), which is what he has when he is “out of range”. Lunchtime, and he pulls out everything we have marked as “lunch” in his lunchbox (so he knows what is snack and lunch, as it is exactly calculated), tests his blood get again, texts us the number, and we, recalling the carbs we packed for him and what his ratio is, tell him how many of his NovoRapid to take. Then he goes through the whole ordeal with priming and ramming himself with a needle, this time in the presence of his classmates and friends. The same is repeated for his afternoon snack, as well as his test when he gets home from school. Once dinner comes, we have already calculated his dinner carbs (after usually taking the packaging out of the garbage over and over, because we have forgotten the carbs, because that’s just what diabetes parents do!) and he goes through the whole situation again. 2-3 hours after dinner, he tests again, and if he is out of range/high, he takes correction insulin and grabs a bedtime snack (generally something free – he likes Whisps and cucumbers) and goes to bed.. And that’s when I take over. I test him around 10:30-11:00, and if he has correction insulin, again at 12:00. And every night, I wake up at 3:00 in the morning and check him. So on a typical night, I check him twice when he is sleeping. The nights he has insulin, I check 3-4 times. And the nights he is low and needs juice (which he drinks in his sleep)? I check him 5 times. With lows while sleeping, diabetics run the risk of slipping into a coma, and never waking up. While there is air in my lungs, that will not happen to my son. His life means more to me than 15 minutes of sleep. Then we wake up the next day, and round and round we go again.
His doctors appointments are in a city 4 hours away. And we go every 3-6 months. (Every 3 right now). We are at the drugstore getting supplies every week and a half (his supplies take up over half of my previous liquor cabinet – how I drink less now, I’ll never know!) The pharmacists know us. The diabetic team know us by our first names (including our non-D kids). We do training with teachers at school, and several of them have our cell phone numbers saved in their phones. Our family and friends have been given crash courses on testing, needles, carb counting, radios, how to inject his glucagon for the emergencies in which he goes into a coma and can not eat his fast acting sugar.
We have done more math in the last 9 months than I have in years. And you know what? He’s worth every tear, effort, sleepless night and frustration.
There are a lot of misconceptions about diabetes, and I’ll touch on that another time… But what you need to take from this is: it’s hard. Every damned day is hard. It’s hard for us, but it’s the hardest for our son. Regardless of what we do or how much we put into this, it is only happening to our son. This is his life, we are just helping him learn how to make it be best possible. And I will continue to do so as long as he wants and needs me to.