Solid support from family, health-care and education community proves invaluable to 6-year-old
On March 2, Adeleine Straight calls the shots.
That’s day the Sault Ste. Marie youngster chooses her sweet treat and decides what fun stuff she and her parents, Carey and Tyler, and little brother, Lukas, will get up to.
It was March 2, 2020 that Addi was diagnosed with Type 1 diabetes. Naturally, that is not the news any parent wants to hear, but thanks to her family’s sincere stab at taking a positive stand on the circumstance, that date – Addi’s “diaversary,” as Carey has christened it – has become one of celebrating the six-year-old’s resilience and her family’s ability to cope so well.
“We just choose to celebrate it because that’s one more year that we’ve been managing her diabetes and getting better at it,” Carey said during an interview with the Sault Star at the family’s Hood Street home.
“She gets to pick out whatever sweet she wants, whether it’s cake or ice-cream, and then she gets to choose what we do as a family.
“So, we choose to just celebrate her and her being brave and her strength, and just keep that positive light on it or her.”
This isn’t saying there weren’t tense moments at first or that stress doesn’t endure. Naturally, the family has had no shortage of questions about Addi’s current situation, not to mention her future. But solid support from family, medical and school officials – not to mention technology – has made the journey that much more seamless.
The diagnosis, just one week before COVID-19 lockdowns, was prompted by Addi’s uncharacteristic behaviour, including being “extremely” thirsty, especially at night.
“So that was strange,” Carey said. “She was peeing a lot and was getting really skinny.”
Carey said a diabetes diagnosis wasn’t a first thought.
“I brought her into emerg hoping it was just a UTI or something like that,” she added. “I had already done my Googling.”
Once doctors figured out the issue, a spate of new concerns emerged – especially as the pandemic was tossing everything into a tailspin.
“Not only was there a lot of anxiety around the diagnosis and what that meant for us, but, with COVID, it became, ‘OK, is she part of the vulnerable population?’” Carey said. “There weren’t really answers around that just yet, so, for us, it was kind of a double whammy.”
One boon for Carey and Tyler, both provincial government employees, was that both were able to work remotely.
“With us being home the first six months of our learning curve with this, it was actually an advantage for us,” Carey said.
Technology has also been a blessing.
Shortly after her diagnosis, Addi started on a continuous glucose monitor to manage her diabetes. As a youngster not especially fond of needles, Addi enjoys the fact that by using her CGM to monitor glucose levels, she does not need to poke her finger as often.
Addi’s continuous glucose monitoring device has also brought further peace of mind to her parents, who can remotely monitor levels 24/7 with a quick glance at their phones. They can also be alerted if Addi’s levels go low thanks to an audible alarm to their phones.
The CGM is a “game-changer,” said Carey as it allows others to see how Addi’s sugars react to different foods, physical activity and core body temperature.
“Like if she’s swimming in a lake and she’s cold, you see her levels drop. You see so many effects,” Carey said.
Tyler agrees.
“And you can track how every situation is essentially a little science experiment,” he said.
Having clear access to Addi’s glucose levels lends both parents added assurance, especially if their daughter is out with others.
“We have her levels the whole time she’s gone, so, if someone takes her for the day, we do know if she’s going low, we can call them,” Tyler said.
“So, that’s a bit of a safety net for us and that helps.”
Like most kids her age, Addi is very fond of her screen time, where her attention is mostly directed on this day.
“I know you’re being shy,” Carey teases her daughter.
But Addi does pipe up from time to time, especially when the discussion turns to treats. She was also eager to show off a main-floor toy room, chock-full of amusements.
There is little apparent evidence of Addi’s diabetes.
“You wouldn’t know it,” Carey said. “She’s the perfect little girl and she can do anything anyone else can do.”
Hip-hop dance, gymnastics, and mountain biking are some favourite recreations.
“There’s just an extra layer of preparation for us for every single outing, every single activity,” Carey said.
Indeed. Finding babysitters is a challenge and, even if close family have Addi for an afternoon, there is no shortage of details that must first be ironed out.
“If someone wants to take her for an outing, ‘Can I come grab Addi and take her to the mall? Can I take her fishing?’ It immediately makes me panic because you feel that overprotectiveness,” Carey said. “‘Wait. Does she have this? Does she have that?’”
Tyler shares this concern.
“It’s all these little things other people just go about their lives doing,” he said. “You have to think about everything, and it adds up. It’s like an accumulative effect of extra stress. We have jobs that are fairly mentally draining. You come home and you’re thinking about this all the time. It never stops no matter what is going on in your life. That is always still happening.”
Both parents can look back now with amusement, relating how Addi decided once to roam off in a store, thinking it would be “funny” to hide behind a rack of snowmobile suits.
The search lasted 10 minutes.
“The good thing is we still had her levels showing up on the phone, so we knew she was in Bluetooth range … ‘She must be around somewhere,’” Tyler said with a laugh.
Given these added commitments specific to Addi, carrying out parental responsibilities for two children can be especially taxing.
“I can’t let her out of my sight, whereas as my son, he usually sticks close anyways, so I don’t worry about him so much,” Carey said. “But, with her, it’s like I can’t let her out of my sight because that feeling of not knowing where she is and that extra layer of worrying because of the diabetes.”
It’s a matter, said Carey, of “just trying to keep things fair” given how much more attention, naturally, must be focused Addi’s way. Both parents are determined to ensure that Lukas, 4, holds no “resentment” toward Addi as both mature.
“We have those kinds of challenges,” Carey said. “But we’ve adjusted really well. She’s adjusted really well. She’s pretty resilient.”
Then toss the COVID-19 pandemic into the mix.
Carey said the “worrisome” part of Addi ever getting the virus is that she’d have complications with her diabetes.
“But that’s the same for any time she’s sick,” Carey added. “If she has stomach flu, she can go into severe lows because she can’t keep anything in her system. Or she can go really high because her sugars are just feeding off of the virus.
“It’s like any other cold. Some kids end up in the hospital and some are completely fine.”
Grade 1 life at Boreal French Immersion Public School is going along smoothly, albeit special considerations have to be made. School lunches are labelled, an emergency care plan has been stuck, school staff are bought up to speed and a nurse attends regularly.
Classmates have been especially supportive and understanding.
“Every time an alarm goes off, her class says, ‘Addi, get some Skittles,” Carey said. “They’re so supportive. It’s really cute.”
Senior kindergarten wasn’t so ideal. Classmates were curious and questioning.
“They were treating her kind of funny like she was different,” said Carey, adding she had Addi stand in front of the class to discuss her diabetes and “explain there’s nothing to worry about.”
Facebook groups for parents of children with diabetes are common, but not always comforting. Many include people from all over North America, many of whom do not have even half the medical coverage the Straights enjoy, which pays for practically everything Addi requires.
“I get posts from people in the States who have multiple kids with diabetes and no coverage … it’s heart-breaking,” Carey said.
“There’s a lot of stories that brought fear for me in the beginning because they were scary stories and because (parents) didn’t have CGMs, they didn’t have the access to the technology that we have. In a way (such support groups are) good and bad, but if there was a local group, that would be really nice.”
One online resource Carey “specifically avoided” following Addi’s diagnosis was Dr. Google.
Tyler said typing “diabetes” into the search engine mostly yields information pertaining to long-term effects, often referring to those who “poorly managed” the disease.
“Nowadays, with the support and the tools that we have, we’re hopefully doing a much better job than the generation that came before,” he said.
Algoma Diabetes Education & Care Program has been a strong support; the family meets regularly with medical professionals, including a pediatrician, dietician, nurse and social worker. Addi’s condition is discussed in detail and adjustments are made to such aids as her pump and basal insulin rates.
“Three months later we go back and see how we did,” Tyler said. “She’s growing the whole time, too. There’s so many X factors in trying to manage her dosage that it’s really tough. We’re finding it’s as much of an art as it is a science.”
For now, the Straights are setting science aside when speaking to Addi about her diabetes, ducking technical definitions and, instead, arming their daughter with common sense information about managing her disease as well as love and support.
“Lots of times we’ll ask her, ‘Do you feel low?’” Tyler said. “Sometimes she’ll come and tell you she feels low, which is good because she’s not necessarily watching her own levels on the phone.
“If she’s about to eat something, we’re trying to teach her, ‘OK, that is something you need to have insulin for. Let us know.’”
Carey agrees. Right now, it’s about trying to teach Addi to “learn her body.”
“She knows to treat herself to get her Skittles,” Carey said with a laugh.
“In the beginning it was hard, though, because she was so young. She didn’t understand. She thought that the nurses at the hospital gave her diabetes. So, there’s a lot of explaining that we have to do. It was no one’s fault. It wasn’t her fault. It just happened, but she’s going to grow up to be just like any other kid.
“This experience, alone, just continues to cultivate these positive feelings about the diagnosis.”
jougler@postmedia.com
On Twitter: @JeffreyOugler
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