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Raising a child with Type 1 diabetes is “all consuming”

I recently asked parents of children with type 1 diabetes what their life is like.  Here Veronica, mother of a 10-year-old daughter who has type 1 diabetes,  tells her story.  These are Veronica’s own words.

Raising a child with type 1 diabetes

In a word, it is “all-consuming.” There is not a moment in the day (or night for that matter) that it’s not in the back of my mind.

Like any parent, my responsibility is raising a happy, healthy, kind, child to become a contributing member of society. However, we have to work a lot harder at the “happy, healthy” part than most.

We don’t want type 1 diabetes to define my daughter – but it is a big piece of who she is and the choices she has to make.

As a parent, being able to plan and be proactive is key. This is something as simple as, it is the teacher’s birthday on Friday. The other room mother is bringing a fancy cake for the teacher to take home and cookies for the kids to celebrate with her in class before lunch.

I arrange my day to “volunteer” and we estimate the carb count on the cookies.

She wants 3, but we negotiate 2.

Three cookies would be more carbs than her entire lunch, and since it’s sugar it could give her a headache or tummy ache afterwards. We estimate the two cookies to be 30 carbs total, which is 3 units of insulin.

I stealthily give her a shot in the arm, so she doesn’t feel funny in front of her classmates.

An hour later, when she goes to the nurse before lunch, to test her blood glucose by pricking her finger, and get her shot for her 35 carb (carefully packed and measured each day) lunch (consisting of a turkey and cheese sandwich, 10 Pringles, half an apple and water), we will see how far off we were on those cookies.

It was a good guess – she’s 135 (her range is 80-140, a non-diabetice would be 70-100).

I am constantly scouring the Internet for recipes, supplements, and essential oils – anything to help keep her healthy. I have stacks of books and I’m familiar with half a dozen different theories of the cause of type 1.

I try to minimize my son’s chances of getting t1d with this knowledge in hand.

We do NAET therapy once a week (to remove allergens and reset the body), in case we can locate the “thorn” that could have triggered the condition.

I am full of guilt when I read about moms changing their entire family over to raw, green diets or low carb diets to minimize the insulin needed and maintain a steady Blood Glucose.

As strict as we try to be, I still want her to be a kid – eat pizza and cake a b-day party. I pray she won’t rebel when she is older.

Yesterday I had a mini breakdown.

We recently got a CGM (Dexcom continuous glucose meter), which attaches to her skin through a tiny needle and measures her BG every 5 minutes and via blue tooth sends it to my phone. It is amazing technology. I used to set the alarm for midnight and 3 a.m. every night, stumble across the house, prick her finger and check her BG.

Now I just check my phone on the night table – I have not slept this well in 3 years!

However, the flip side is, I feel like we were diagnosed all over again – it is all new.

The other day my husband called in panic…she was 256 after lunch. What the cgm has given us the opportunity to do, is to see what her BG is between and after meals…I had no idea she was going that high between meals – it was a real blow, I thought we were managing it better than that.

So I find myself talking the husband off the ledge…it’s been almost 2 hours after lunch, she was high right before lunch, I’m guessing she had a 5 unit shot. Give her a few more minutes – she will be fine.

If we over correct and give too much insulin, she could go low.

She usually feels a low coming on, but if it happens too fast, she could pass out and require a shot of glucagon – I don’t plan to ever have to use it, but it could save her life one day, if she dropped too fast.

I want to save her this embarrassment if I can.

Finally, after 3 years of t1d, at a time when I expected to be back at work, I find myself volunteering for JDRF. I travel to local schools and share symptoms and take the kids through the Kids Walk Fundraising program (they raise money for making type one, type none and do a walk in school).

In fact, this weekend, I will be attending a fundraising gala, that I have been helping to plan for the last 5 months. Kat will be an Ambassador for the event.

So all-consuming sounds about right when it comes to parenting a child with type 1 diabetes.  

Thank you for sharing, Veronica!  Click here to learn more about the symptoms of type 1 diabetes, which is often misdiagnosed as the flu (and can be a deadly mistake).

This is Bonnie’s story about being a type 1 diabetes mom is not the same as being a helicopter mom.

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