Diabetes has become a part of our lives. Most of the time, it is a nuisance at the most. White noise in the background that we have gotten used to and don’t really notice anymore. But there are other times, times of unexplained highs or lows, times of sites ripping out, times of beeps and alarms. At those times, diabetes annoys me, it makes me mad.
I’m far from being the only one who has these days. These times of wishing things were different.
So, I asked and the T1D community answered. This is T1D:
Sometimes I wish diagnosis day never happened
I wish I didn’t have to poke his fingers or change his pump sites.
I wish my daughter’s moods weren’t determined by her blood sugar.
A day without poking myself, worrying what I must eat and how much insulin to take.
I wish I could sleep however long I wanted without worrying about going too high or too low.
A day without pain.
I wish my son could eat spontaneously without us worrying about numbers, carbs, and insulin. I wish he could have sleepovers and be out with friends without us worrying.
Sometimes I wish he could eat anything without a spike at all.
I wish I could just eat.
Sometimes I wish people understood
I wish Type 1 Diabetes had a different name, like pancreatic-dysfunction-not-caused-by-anything-I-said-or-did-or-ate.
That people would understand T1D and the impact his sugars have on his behavior and mood.
Sometimes I wish people wanted a real answer when they ask how we’re doing. Usually, I’m glad all they want is “fine. How are you?”
I wish people knew how much effort it took to “manage” this lifelong, life-threatening disease.
That people could see the scary side and not just the inconvenient side of this disease.
I wish people understood that every day is a fight to stay alive.
And that people with type 1 diabetes don’t take a standard dose of medication and then everything is fine.
I wish people understood the differences between type 1 and type 2.
I wish people understood how sleep deprivation affects a person.
That it’s a constant battle to alter dosage, carbs, activity etc just to stay ahead of the monster.
I wish people knew the reality of our normal and would never again say “it’s just diabetes”.
Sometimes I wish I was free
That I didn’t have to count carbs.
That we didn’t need a scale, or an app, or measuring cups to eat every meal.
When we buy a cookie at the bake sale (yes, he CAN eat a cookie), that everyone didn’t look our way while he checked his blood sugar and injected.
I wish she could leave the house carrying nothing at all.
Sometimes I wish that I could just leave the house without asking or checking to make sure we have the meter and supplies.
I wish I could sleep without the fear of my son going too low and not waking up.
Sometimes I wish I could leave the house in swim trunks. Just swim trunks. Nothing else to carry.
Sometimes I wish there was more support
I wish governments and doctors would realize it is hard for type one diabetics to get pumps and pump training in many places.
That the school districts would just do what is legally required for our children without issue.
I wish we could find the comfort daily in the same way we find comfort and support through Type 1 camps and conferences. There’s nothing like being in the presence of others who know exactly what T1 means.
Nothing like watching yourself feel like you can actually let go a little more because everyone surrounding you REALLY gets it. Behaving like a normal human being, rather than hiding how nervous you are about your kiddo every day.
I wish my child didn’t have to wait 2 years to be eligible for a pump.
Sometimes I wish I had friends who have kids with diabetes.
I wish insurance companies wouldn’t always ask if we really still need that insulin coverage. As if my child’s T1 is going to disappear one day.
I wish that my son could see himself the way I see him, strong, funny, so so loveable. But instead, all he sees is this disease.
Sometimes I wish it was better
Sometimes I wish high blood sugars made me more agreeable, delightful and hilarious instead of irritable, difficult, and angry.
I wish a low blood sugar made me crave exercise and long walks on the beach instead of an entire box of corn pops.
I wish our conversations were more about authentic experiences and less about numbers.
Sometimes I wish Type One was accompanied by an inexplicable super power like invisibility or dispensing $100 bills out my left ear at will.
I wish my daughter wasn’t worried about passing this disease to children she doesn’t even have yet.
Sometimes I wish my pancreas came with a lifetime warranty.
I wish test strips magically turned into solid gold after each use.
I wish it was me and not my child.
But above all else
We all wish, every minute of every day, that there was a cure.
~ T1D Community
Thank you to everyone who contributed their “wishes”. I couldn’t have done this without you. We need a cure!
What is your T1D “Sometimes I wish”? Let us know in the comment section. And don’t forget to follow Carb Counting Mama on Facebook!