We just came back from a drive at an abandoned hotel here, on the Azore Islands, and I’m being flooded by World Diabetes Day posts on Facebook. Unfortunately for us, since June 13, 2023, we know very well what this condition looks like,
My then 9-year old daughter was diagnosed and we’ve been in T1D team for more than 2 years. I’d like to tell you we’re doing perfectly well and she’s in range 100% of the time, but we don’t lie in our household, so I shan’t on my blog either.
What we achieved though (thanks to technology and a huge focus on our previous life goals): balance. Happiness either. A normal life.
What?
A normal life with Diabetes?
Yes. As soon as we came back to the US (kiddo was diagnosed in our homecountry, Romania), we got her a CGM (Continuous Glucose Monitor – also known as sensor) and I pushed for a tubeless insulin pump (Omnipod 5).
These 2 work in tandem to keep us aware of her ever-fluctuating glucose levels, blare alarms in the middle of the friggin’ night (sometimes they don’t communicate, although placed on the same small body) and deliver insulin based on a program and also corrections / boluses (when we push insulin to cover for the carbs in food).
As you can imagine, life ain’t perfect in Dojo’s family, but the upside is amazing: no more finger pricks (we change the sensor every 10 days and I place a new pump every 3 days). I got so good at this, I’m doing these while she’s asleep, so there’s litterally no more pain. All my kid needs to do is have these 2 things on her body and apparently they don’t bother her too much.
Here is what I want you to know, as you probably have entered the same elite team we are in now:
You are not to be blamed, there’s nothing you could have done to prevent it!
We’re parents and our main job is to worry. If you’re also Romanian, you need to blame someone and in this case you would blame yourself.
Type 1 doesn’t happen because your kid ate too much chocolate. Funnily enough, my kid has always been fed home cooked food and never ate too many sweets.
I’m a member in many Type 1 support groups now and there are a few parents (diabetics themselves) who kinda feel something is off. Who usually do some finger sticks and then go for more tests. But these are VERY few and us, regular folks, have absolutely no clue on what it’s like.
In our case the 3 main symptoms (skinny, tired and drinking a lot of water), never led to any questions: I am skinny myself (15-20 lbs underweight for my tall frame, but as healthy as a horse at almost 50), the kid was playing a lot of tennis (it was summer already, so she was tired from playing and thirsty from all the running and sweating).
She never got into DKA, but, even if it’s your kid’s case, just take it as it is: an unexpected hurdle.
Don’t make too much of it and don’t expect miracles
We have 2 types of people here: the ones who feel like their kid’s life is over and they mourn every day and those who are non-stop reading and hoping for a cure.
For the first category: it’s painful as hell, but I promise you, your kid will have a nice childhood again. Your kid can do sports, play the piano, become a super star. There are worse diagnoses you could get, Diabetes is absolutely manageable.
Focus on getting them the care needed, push for sensors from day one and, if applicable, an insulin pump. Let them do sports. My daughter is a competitive tennis player since 4 and we refused to let this stupid condition destroy her dreams.
Don’t cry too much, don’t focus on the negatives. Your kid will know something is really bad and suffer extra. My daughter told me one day that she’s never seen me cry, unless there was a death in our family. Well, imagine how she would have reacted, if I cried my eyes out for days, at her diagnosis.
At this moment Type 1 has NO cure. So don’t expect miracles either.
There is amazing progress being made with stem cells, but nothing official yet. Don’t throw your money on “dreams”, better invest it to get your kid the best technology and pay for college. Don’t know if I told you yet, your kid can still go to an Ivy League or become a pro player (no matter the sport you choose).
Always be your child’s advocate
Ever since my daughter’s US Pediatrician told us “all is OK, see you next year”, although my kid’s fasting blood sugar levels were 360 mg/dL (the normal range is 70-120), I never let my guard down.
We were lucky to have a Pediatrician in our family (sister in law) and also an expert in Diabetes (cause that’s how life works) and she immediately sent us to the hospital
The dud, after being confronted, tried to gaslight us “yeah, but sometimes, when we eat, our sugar levels go high“. Again, the bloodwork was done fasting (at 7AM) and a non-diabetic doesn’t go to over 300 anyways.
So, as you are already getting your doctorate in this condition, as a caregiver, don’t be shy to express yourself.
Ask questions and don’t let anyone fool you. Some people are in over their heads, others are just trying to cover their tracks, for fear of legal retribution.
Do things your way
Some people love to celebrate diaversaries, some not.
In our family, for instance, we don’t really want to remember those shitty days, so there’s no party going on.
But celebrating x years since this diagnosis works for other families. And I get it, you don’t celebrate the day itself (we’re not masochists here), but your kid’s amazing resilience and courage. I get it, worth celebrating.
Don’t let others influence how you relate to this condition. If your kid loves to go to specialized camps (which I find to be an amazing idea), let them do it. If they’d like to just feel “normal” (not that they’re not), that also works.
Don’t let them feel ashamed or guilty
When we got my daughter on Omnipod 5 and decided she’ll wear them on her arms, her immediate reaction was “but mom, it will show“.
People have glasses, when their eyesight ain’t perfect. I don’t know too many feeling self-conscious about it. Just like some kids need glasses to see better, my daughter wears a pod on her arms, to deliver her insulin (which keeps her alive).
Weirdly enough, my crazy comparison worked and she understood there’s nothing to be ashamed of.
We didn’t get any bullying issues (yet), so I never got any chance to go full-Romanian on anyone and the kid is almost 12 and can surely take care of herself in most situations.
So … these are just 5 thoughs for you on this day. We refused to let Diabetes destroy her dreams and childhood. She’s traveling (a lot), playing tennis, swimming and living life as she should.