NEUSTAETER: Type 1 Diabetes and how you can help — Maison’s story

A few weeks ago Maison was chasing me around playing “Trrrrrains!” (his favourite thing in life) when he stopped and asked his Mama, “Why she have posts on her shoes?” while pointing to my feet.

I looked to his mother for interpretation…

“Oh!” Adrianne giggled, “He means your heels! It’s been a looong time since I wore heels and he doesn’t even know what they look like!”

We laughed together in the way that only mamas can at the reality of how our lives change when a baby enters them, and so much more when your baby is critically ill: when you almost lose him repeatedly, when you’ve seen him pricked by thousands of needles and heard him cry for reasons that “What To Expect When You’re Expecting” didn’t prepare you for.

That’s the reality of what mamas with sick babies go through every day — well, that and sometimes a whole lot worse.

Adrianne and I know, because we’re those mamas.

Both of us, with our first sons, glimpsed the reality of losing them. And as moms of critically sick kids, we’re each experts on our child’s medical condition and are acutely aware that the top priority in life is making the world a better place for them.

Well, that’s how I’d put it. Later when we talked again Adrianne would much more succinctly say, “Tell people not to be a**holes; that’s all we really need to do. Just, not be a**holes.” (Holla! She’s so much cooler than me.)

Maison plays happily in the background as all of these shared experiences as mothers and all of the shared history from our overlapping childhoods go through us without a word; it’s very easy to love Adrianne, which is reflected in Maison.

After being born two months premature, Maison grew to be a healthy and remarkably joyful little boy. He is effervescent, curious, blunt and one of the most loving little boys I’ve ever known.

But Adrianne noticed something odd just after this third birthday; although he was his energetic, happy, engaging self, he was also urinating very excessively and was drinking large quantities of water all day and night, but still constantly saying he was thirsty.

Parents, listen up:

When something feels persistently “off” or concerning about your kid, it’s okay to ask, even if you’re not sure. That’s what Adrianne did, and following that intuition not only saved Maison a lot of pain and deteriorated health, but it was also the first of thousands of times that Adrianne would save Maison’s life.

It turned out that Maison has Type 1 Diabetes. He had showed no other outward signs, symptoms, behavioural changes, weight change, etc. and there was no family history of diabetes; just extremely excessive urination and concerning thirst.

That day changed the Erlandsons’ lives forever. Today, they think about and plan around Maison’s health around the clock.

Because Maison is so little, his blood sugar levels fluctuate constantly with every changing environmental factor (including food, sleep, emotions, weather, diet, etc.), so imagine what it’s like for a child who cannot have fluctuating insulin levels. Without medical intervention, it is deadly.

So families like the Erlandsons jab their children with needles every day to test insulin levels. According to Adrianne, who has seen all the variations, “On a good day you can use four needles and on a bad day it could be more than 10.”

Is now a good time to mention that those needles aren’t paid for by BC Medical? And neither is the life-saving device that Adrianne reinserts herself into Maison’s tiny arm or belly with a three-inch needle every week. (The first time she did it she was following a Youtube video. I know because I followed along when she later posted the process on Instagram Stories. It is terrifying.)

This device allows Maison’s blood sugar levels to be measured every five minutes and then texts the results to Adrianne, her husband and her mom’s phone so that they can constantly monitor how Maison’s insulin levels are trending without having to risk waiting until he’s in diabetic shock before knowing that intervention is needed. It also significantly reduces the number of times Maison has to be poked per day.

“I aim for non-diabetic levels,” Adrianne tells me, “He should be the same as any other kid as far as I’m concerned. With the help of this device he’s 80 per cent in range. If his body is having to focus so hard on this one thing, then his other development suffers. If you can keep his number consistent his odds of thriving are much higher. Through this device, I am acting as an organ 24/7. I’m his pancreas.” This device also means that Maison can do normal things that little boys should be doing: gymnastics, trips to Grandma’s house, sports, etc. without constant uncertainty and risk.

It is also the impetus for our conversation as Adrianne is again waiting for a critical component of it to arrive in the mail.

But the incredible device that allows Adrianne to save Maison’s life every day combined with other medical and dietary needs costs a prohibitive amount of money out of pocket for a family like the Erlandsons. Clean needles and other supplies are free for street-drug users in British Columbia, but although pumps just became covered by MSP, needles and other equipment for diabetics aren’t. I’m not opposed to reasonable supplies of free hypodermic needles for addicts (read my column about that here), but if that’s possible then I feel we should also make room in the budget for free baby-needles that save innocent lives just like clean needles save the lives of addicts, right?

In the end, no matter how much it costs, there is nothing that a mother like Adrianne would not sacrifice for the life of her child though; no amount of money, convenience, “success” or future security matters more.

“In my opinion, this is the priority”, Adrianne says with finality. “I would sell my car to make sure that Maison has what he needs to be healthy and safe.” I sense that her certainty is based on some choices she has already had to make.

But in a country like Canada, should the Erlandsons have to make choices like that because their son has a life-threatening condition?

Or is it time that we examined the things that we prioritize in our medical system, particularly when it comes to life-saving needles and technology for people with Type 1 Diabetes? Which, by the way is not caused by being overweight, eating too much candy (OR ICE CREAM!) or anything else controllable; it is a seemingly random condition that affects the body’s ability to process sugar.

Don’t feel bad if you didn’t know that; Adrianne and I only had a vague understanding of the difference between the types of diabetes before Maison came along too, “Before he was diagnosed I thought it was all diet”, says Adrianne, “ I own an ICE CREAM shop! Talk about mom guilt.”

But Adrianne and I know better now, thanks to Maison.

Today, November 14th, is World Diabetes Day and it’s a good day to start making a change for people like Maison and families like the Erlandsons.

“My core message is about having compassion, so many people are going through so much. But I also want people to know that there’s a supportive network of families also going through this. Also, you have to do the research and advocate for yourself and your child. And write your MLA about this.”

We have an incredible medical system; no one is more grateful for it than I am. Without it my own child would not be on this side of heaven where he belongs and I am eternally grateful, it brings me to my knees in gratitude on a regular basis.

But it is not perfect, and this is an example of something we could and should change.

If you’d like to help families of children like Maison, then please do what Adrianne is asking and write your MLA about your desire to see the exorbitant personal costs for these families lowered, starting with the cost of needles and moving toward the coverage other life-saving equipment. Government will not, and often cannot, make changes without an outcry from its citizens. There needs to be a demand in order for change to happen and Maison’s life is more than worthy of that change.

We can’t take diabetes away from kids like Maison, but we can make it more manageable and less burdensome for their families.

As we were talking Adrianne, received a text that the critical piece of equipment she had been waiting for has finally arrived in the mail. She can now pay the bill and rest easy every five minutes for the next three months — when she’ll goes through it all again.

by Refraction

NEUSTAETER: Type 1 Diabetes and how you can help — Maison’s story

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