One of our posts recently ruffled some feathers in the Diabetes Community.
Some D-parents were particularly unimpressed with a question and response in the Ask D'Mine column on July 20, which focused on whether some parents may hover too much over their CWDs (children with diabetes).
We apologize for any insult taken; the intent was certainly not ill-willed! Rather, our hope was (as always) to respond to an interesting reader question, and thereby raise a point for discussion. We very much appreciate the work our columnist Wil Dubois does here sharing his expertise and personal experiences, with the full knowledge that Your Diabetes May Vary -- along with your opinions.
It's true that Wil isn't a D-parent himself, so we reached out to one of the community's beloved diabetes bloggers, Meri Schuhmacher, to offer some thoughts on all this. As you may know, three of Meri's four boys have type 1 and she blogs over at Our Diabetic Life.
It's a little longer than our usual posts, but we felt Meri's response was worth publishing at full-length, given the controversy that our recent D'Mine column generated:
A Guest Post by Meri Schuhmacher
Freaky Friday was a movie first made back in the 70s.
It was a great movie, back in the day. So great it has been remade a handful of times under different monikers, delighting new generations with comical mishaps and lessons learned. In each movie, two people switch lives for a short period of time. The moral is always the same: You may judge other people and how they do things, but you'll never understand their life until you've literally walked a day in their shoes.
Unfortunately without Hollywood, this is all but impossible to do. It seems though, judging these days is the new black. We all have opinions about how things should be done, and we're not afraid of calling people out on their apparent misguided directions in life.
This all circles back to a recent DiabetesMine column, where a gentleman wrote in and asked: "I've been living with type 1 for decades now, after being diagnosed as a young kid. Back in those days, my parents hardly ever got up to check my blood sugars in the middle of the night. I would simply eat a piece of toast with peanut butter and a half a glass of milk if my readings were less than 100 at bedtime. That would get me through the night, most of the time. I know those were different times: two shots a day, meal exchanges, and home glucose meters weren't as mainstream as they are now. But I bring this all up because I read ALL these parents these days talking about never sleeping and getting up every-other-hour to monitor their kids' blood sugars. What brought about this change? Is it overkill on the part of the parents? I mean really, as someone who's been around the D-block personally and professionally, Wil, do you think modern CWDs are hovered over, and parents are creating more stress and worry for themselves than need be?"
Today, as a parent to not only one child with diabetes, but rather three CWDs, I would like to take a stab at answering that question. Our family's first diagnosis came 15 years ago, when my son was 8 months old. He's used a variety of insulins: Regular, NPH, Lente, UltraLente, Humalog and Novalog. I feel like I have an idea of what parents years ago went through, because we've used the same insulins, although my perspective may be a bit different since my son was diagnosed as a baby and it was a time when meters were readily accessible and expected in D-Management.
Why are things different these days for parents with type 1 children, and why does the popular theory seem to be that they never sleep?
Let's start with the obvious: We have more information. Here are some things I know now that I didn't know 15 years ago...
- I know that a tighter A1C with smaller BG swings means less complications down the road for my children.
- I know that growth spurts, hormones, and rigorous activity during daytime hours can affect my boys' nighttime numbers. I know about the "Dawn Phenomenon," too.
- I know if my son's pump set rips out at 9 p.m., and I don't check him until 7 a.m., he could easily be in DKA. I also know that children don't always wake up from high or low blood sugars, that is something that generally, hopefully, comes some time after diagnosis.
- I know that emotions affect my boys' blood sugars, and children are wrought with emotion. The death of my husband made for a very interesting blood sugar aftermath. And by interesting, I mean I didn't sleep for two months.
- I know that tighter blood sugar control means better cognitive function for my children. School is a different animal now than what it was 20-30 years ago. Kids are expected to do way more, with considerably less time, at a considerably earlier age. The double-edged sword here is if we keep them in a reasonably tight range, they are more symptomatic and sensitive to highs and lows, so we as parents feel a huge responsibility to keep the swings at bay as much as we can.
- I know that constant lows and constant highs are not good for their bodies. Thinking back to when my son was a baby, our goal that first year was to keep him between 200 and 300 mg/dL to avoid seizures. That's the best we could shoot for using Regular and Lente. If my son were diagnosed now at 8 months old, he would have a pump, fast acting insulin, and would be expected to be in the 100s.
- I know about this thing called "Dead in Bed Syndrome."And although it isn't the reason I check at night, it fuels me to get up. If it does happen to our family, God forbid, I want to be able to know I at least tried.
- I know "Your Diabetes May Vary" isn't just a witty tagline; it's the truth. When my 15-year-old was in elementary school, I didn't have to change his basal rates or his carb ratios for FIVE years. My younger two seem to change basal rates every time they shower. They use the same insulin my older son did then, but their bodies are different. Diabetes is a different experience for each individual. My older son breezed through puberty, my 11-year-old just started and I've had to up his basal rates three times in as many months.
All of this is combined with new technology, a constant stream of numbers, new insulin types, and more enlightened endos who ask that everyone stay in the lower 100s... It's a battle, don't kid yourself.
So, nighttime checks become the norm. And if at midnight our child is in the high 200s, we are going to fix it -- not only for the reasons mentioned above, but also to help us get to a golden A1C. My boys don't generally eat from 7 p.m. to 7 a.m., so checking at night means that's half their 24-hour day that I can work with their numbers without dozens of other variables coming into play. I might have some long nights once in awhile due to illness or ketones, but as a parent it's worth the bags under my eyes. One day my children will leave the nest and they will be on their own. Isn't it OK to help them along the way until then? In the future, I want to look in my boys' eyes and say, "I did my best," especially if they are facing complications.
That leads me into the topic of enabling, and whether we're raising a generation of children who can't do for themselves. That is laughable.
Just because a 13-year-old at camp can't change his own sets or change his own basal rates yet, doesn't mean he is being enabled. Let's face it, learning to change a set and change settings in a pump for this Internet generation is simple. When the time is right for that family it will happen. Who are we to judge them? Maybe this child has other obstacles in his life that are more important to overcome at this time? Maybe the family sent this child to camp for the soul purpose of gaining courage for their first set change? Maybe this family isn't online and doesn't know that they can learn to change their basal rates all on their own? There are doctors out there that forbid it. Families that aren't connected online only know what their endos teach them. Also, families that are overbearing and enabling were likely like that before diabetes came along... You can't look at just a few families and know the pulse of entire D-parent population.
I like a comment that my friend Lora put on my blog: "I think it is a bit premature to assume how today's CWDs will turn out... they haven't even grown up yet. Who knows if my parenting skills will cause him to have bad self-management in the future? Was there a study done on my future self???"
Seeing parents online complaining of exhaustion doesn't show the entire picture. No doubt you are seeing ranting from one bad night, or maybe a string of bad nights. One night of illness or ketones can lead to an entire night of checks. Most parents aren't up all night every night checking sugars, although what you see may read could seemingly translate into that. Whenever I post about a kinked pump site, I invariably get a dozen emails from families that say, "That is why I'm not getting a pump!" But those failed pump sites are 1 out of every 100, and I'm not posting about the other 99 days when all went just as planned with their equipment.
My kids don't look at me like I'm an overbearing mother. They wake up and see the pile of test strips on their side table and hug me.
"Rough night, Mom?" they may ask.
My response: "No biggie. I got you squared away."
But hours before on Facebook, I was recounting the three corrections that did nothing to bring him down, and the insulin that I swear was made of water. That's so other parents can say, "I'm right there with you." I don't know what it is about the "power of same," but it changes everything. When parents see fluctuating blood sugars are common, it helps parents to know that their children aren't at fault for the long nights, but rather diabetes is. Knowing we aren't alone in all of this makes all the difference. It makes for more relaxed, healthier parents. And we all know relaxed, healthy parents lead to relaxed, healthy children. If parents don't have an outlet, they will make their children their outlet...and I think we all know that isn't ideal.
Empowered parents lead to empowered children.
Overall, I think parents are doing their best with the information they're given. If you see a parent that is enabling their child, or doing something you think will be harmful, maybe it would be a good idea to empower them with knowledge you have learned along the way, rather than pointing fingers and shaking your head.
Here's a secret that some PWDs don't know, parents THRIVE off information. And we're really good at processing it all, and finding what fits best for our family and our children.
Because just in case you didn't know... there is nothing more important to us on this planet than our children. Their needs come before our own, and we feel 100% responsible for their well being, always. That is why I think Tom (the gentleman who asked the question in the first place) had good parents. They protected him from all the worry. That is what I endeavor to do every single day.
Although, I wish he could walk in my shoes for a few days. I'm pretty sure he'd be tired too.
We completely agree, Meri. It's up to every parent and family to decide what works best for them. God knows I didn't sleep much when my three children were small, and they didn't even have diabetes! As Creator & Editor of this site, I'd like to assure every D-parent out there that you have our FULL respect. I cannot even imagine what it would be like walking in your shoes...