Fourteen years ago today, my son was diagnosed with Type 1 Diabetes at 18 months old.
This picture was taken just two months after that, a few weeks after we got his insulin pump that you see pictured below.
All this time, I had thought he was 20 months old. I guess because his diabetes anniversary is August 20th, that number somehow got stuck in my head.
Some friends were asking me about his initial diagnosis, and my husband insisted that our son had been 18 months old. I remember every single second of that doctor’s visit, so how could I be wrong? I was, though.
Maybe it was the trauma of diagnosis, or maybe it was just my mind somehow playing a trick to give him two extra months of not having this condition?
I haven’t decided if I need to go back and correct everything I’ve ever written about my son’s diabetes to 18 months or not. It doesn’t change the fact that he has been living with T1D for 14 years now.
Ask any mom or caretaker and they can tell you their diagnosis story so well. That nagging feeling that something was wrong, was oftentimes misdiagnosed, and even some who almost lost their children, and others who have lost children because their concerns were dismissed.
My son’s pediatrician told me it was impossible for him to have diabetes. When I asked him if his unquenchable thirst and constant urination were the result of Type 1 Diabetes, he insisted he was fine.
I kept asking questions about his symptoms, so the doctor told me he would check my son’s blood sugar “if it would give me peace of mind.” When the meter read 640mg/dl (could have been 460… another cloudy number in my memory), the doctor himself did not believe the meter and asked his nurse to bring another one. He checked again and we got the same result.
And so our journey began.
They tell you it gets easier – and in many ways it does. We all have to become experts, and our children do as well. One of the early endocrinologists we had was straight-up honest and told me I would really get tired of diabetes as it would nag me all the time.
I thought that was a very odd thing for a doctor to say. Now, understanding the constant checking, review, diligence, planning, anxiety, and everything else, it was probably one of the most truthful things he could say without directly telling me that as a caretaker, I would be exhausted all the time and pushed beyond my physical and emotional limits daily.
They don’t tell you how to cope with it all as a caretaker.
That’s no one’s fault because there really is no time to talk to you about that.
You have to absorb and learn as much as possible about Type 1 Diabetes before your child is discharged from the hospital. You are thrown into calculations and medical terminology that endocrinologists and diabetes educators leisurely learn over several months, even years. Once blood sugars are stabilized, you are armed with an overwhelming amount of information and medical supplies and told to come back to the doctor in a few weeks for a follow-up.
They don’t tell you that you won’t sleep. The amount of worry and anxiety will be overwhelming and you’ll constantly check on your child to make sure they do not fall into severe hypoglycemia while they sleep. I’m not sure if that feeling ever truly goes away.
They don’t tell you how challenging it can be to carry on as normal while people without diabetes in their lives say a lot of ridiculous, shocking things.
They don’t tell you how difficult it will be to send your child off to school with diabetes. And they have no idea how challenging it is when the school doesn’t take it seriously or wants to override what you and your doctor know is needed to keep your child safe.
There’s so much about raising a child with diabetes that no one can really prepare you for.
(And I’m sure there is even more to worry about if you are the person who is actually experiencing diabetes. I’m not sure they are properly informed in the beginning either. When the patient is an adult, physicians can be even more complacent.)
And yet, I’m now in a position where, as a diabetes health coach, advocate and Diapoint founder, I am completely immersed in diabetes every day. It’s not like on Day 1 I said, “Hey, I think I’ll start a company to support people with diabetes and their caretakers.” The thought never crossed my mind all those years ago.
All I knew was that this diagnosis was really hard, even for me: a healthcare worker (at the time). I thought I knew a little bit about diabetes through a previous project, but I really had NO idea whatsoever.
I also knew that for the first three years of this diagnosis, we did not have a proper endocrinologist who understood the condition. Forget about educators, psychological or social support. And, we certainly did not have anything in terms of community. It was a very isolating time.
Shortly after my son’s diagnosis, I sat down one day to start my photography blog. But instead, I found myself writing about diabetes. That was not the intention, but I guess I needed to get it out.
Writing about it became very therapeutic. I really just wanted to brain dump everything I had learned on this journey onto the internet in case there was another caretaker awake at 2am in the world who needed to hear it would be okay. I did not want anyone to have the same isolating experience that I did – and still don’t want that for anyone.
That blog just kind of morphed into what I do today.
I eventually left the comfort of my corporate job to start Diapoint because it had to be done. I thought I could help a lot more people if I did that.
So if it’s 2am., and you are awake and reading this and wondering how in the world you will do this, you will. It won’t always be easy, but you and your child will find your way. And, you will see the beautiful things in life even though diabetes is there with you all the time.
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