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caring for a child with type 1 diabetes: ‘it just reaffirms the need for gratitude’
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“it is a full-time job to manage type 1 diabetes, and there’s never a day off. you always have to be 100 per cent on the ball, making all the decisions, and you have to do it because if you don’t, that’s your life or that’s your child’s life on the line, and life is precious. there’s no coming back from that.”
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micaela and her husband started noticing changes in the newborn baby pretty early on in her life. makinley, their daughter, became increasingly irritable and fussy than what was typical for her, and she’d cry and whine a lot more. at the time, makinley was still in diapers, so she wasn’t yet old enough to articulate what was going on that was making her feel the way she did.
at the time, micaela brushed off the changes because makinley was going through a relatively big milestone—she had just started daycare.
“i just kind of attributed it to that, but then i started noticing other things,” said micaela.
makinley was drinking more water, which also didn’t set off alarm bells in the hot july summer. she was eating a lot more, but they were always told that if she was eating well, that’s a good thing. then they noticed that her diaper was getting soaked through, something unusual they couldn’t shake.
“we would put her down for bed and a couple hours after her being asleep, she would wake up very upset, very irritable,” micaela said. “she wet through the diaper, her pyjamas would be wet, her crib sheet would be wet.”
they switched to overnight diapers, thinking the diaper might be the issue. but it kept happening, and that’s when they realized that something was going on.
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getting the diagnosis changed everything overnight
when micaela and her husband took makinley to the doctor, they focused first on her weight. although she was eating a lot more, her weight hadn’t really changed aside from a one-pound difference.
the doctor took stock of makinley’s symptoms and decided to run some blood work because weight in children can be a good indicator of type 1 diabetes. she told micaela and her husband to go home and get some rest, because everything could be a “weird coincidence” and they shouldn’t worry beforehand.
“she tried to really reassure us,” said micaela, noting that even if diabetes was the diagnosis, they had caught it early and early is always better.
the following morning, they got the call.
“they called my husband and basically said, ‘hey, her blood work came back abnormal. she needs to come in right away.’ and that’s how we found out.”
she continued, “we were distraught in the moment and really upset and just definitely overcome emotionally, a lot of tears. at the time, i didn’t know what type 1 diabetes actually entailed in terms of what her life would look like and what mine and my husband’s life would look like as her parents.”
they initially thought that type 1 diabetes was just taking some insulin, and things would be alright. but they weren’t prepared for the reality that things were a bit more complicated.
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learning how to care for a child with type 1 diabetes
micaela admits that she had no idea “the depth, the care and the management” it took to ensure that makinley would be alright from day to day.
“we were very surprised when we started going through the process with the hospital in terms of what kind of care she needed and what we needed to do,” she said.
they learned as much as they could from the diabetes education resource for children and adolescents (derca) in manitoba over five days. the training sessions helped them learn how to prick makinley’s finger to check blood sugar levels and how to inject insulin, so they could take their baby home.
at the beginning, they were prescribed a specific type of insulin known as nph, which is often reserved for those who cannot afford newer types. micaela notes that her daughter was given insulin because she was in daycare, and they start everyone in that age group on this type of insulin because it requires only a shot in the morning and then a shot at night.
“in manitoba, we don’t have nursing staff or any support staff in schools or daycares for children with diabetes, so they do that so the parents don’t have to come to school to give the insulin. the trade-off … is it doesn’t really control the blood sugars very well.”
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she and her husband weren’t satisfied with makinley’s current medication, so they “advocated to have her switch” to something else known as mdi, or multiple daily injections.
these injections use more modern insulin that controls blood sugar better, but it require more injections throughout the day.
“that was probably the hardest phase of our diabetes management with makinley, because she was getting a lot of needles in a day. sometimes it was as few as five or six, but some days it was as many as 10 or 12,” said micaela. “to give a child under the age of two that many needles in a day, it’s really hard. it’s really hard on them. it’s really hard on you as a caregiver because they’re upset, understandably, and it’s basically one parent restraining the child while the other parent is injecting the insulin, and it’s a non-negotiable.”
during that time, micaela and her husband would have to leave work to go to makinley’s daycare to give her a shot because “she was randomly high at 2 p.m.” and they’d have to go at lunchtime to ensure that she was stable for her afternoon.
shortly after, they realized that type of care wasn’t sustainable, and they changed makinley’s treatment plan to the tandem t-slip x2 pump, which delivers insulin automatically and works with a continuous glucose monitor.
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“we can’t say enough about the insulin pump,” said micaela. “it’s allowed us to get a full night’s sleep, which was always a struggle before.”
makinley was also finally able to sleep throughout the night because of the pump, which has given the best blood sugar control possible with type 1 diabetes.
“i say controlled vaguely because things with type 1 diabetes are, unfortunately, never truly under control. it just makes life easier, and it allows makinley more opportunities to focus on being a kid instead of always needing to deal with something diabetes related.”
it’s still hard work, but it’s worth it
taking care of makinley’s type 1 diabetes to the best of their ability will always require work, and “it’s not easy, i don’t think it will ever be easy.”
but being able to give themselves and their daughter the freedom to not have to worry about needles all day and night, and have things taken care of automatically, provides a level of “flexibility” from it.
now, makinley has been able to repair her relationship with food, which was always a challenge prior to the pump. her diet had to be completely restrictive. she always had to eat 30 or 40 grams of carbohydrates, had to eat her meals at incredibly specific times, and had to have needles at the exact same times.
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regardless of whether it was a weekday or weekend, makinley’s food schedule was as rigid as they come—but that’s all in the past.
“if she asks for a snack right now, and it’s a carb snack, something with sugar in it or … crackers or something, we don’t have to get a needle out and prime it with insulin. we just grab her pump,” said micaela. “she’s not having to sit there and question, ‘well, i want that cupcake, but is the cupcake worth having to get a needle? that’s tough for a kid because they know they want it, but they know that that snack or that treat also comes with a needle.”
micaela also hopes that the changes that come with the pump have helped makinley’s mental health, because before the pump, pulling makinley away from childhood activities was far more regular and now, although it still happens from time to time, she’s freer to just be a kid and not have to have type 1 diabetes at the front of her mind at all times.
while micaela and her husband still go to makinley’s school every day at lunch, the frequency with which they have to leave work for random high or low blood sugar is much lower, allowing the entire family to feel more relaxed, as it’s taken care of, and makinley is doing well.
her health is also set up for the long term because of better blood sugar control, which is “a great relief” for her parents.
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“at the beginning, when we were doing those injections, and we couldn’t get into those targets (blood sugar targets), the first thing our brain and in our hearts as parents was like, ‘what is this doing to her body long term?’ said micaela. “we want her to live as long and as healthy a life as possible, and she needs good blood sugar control to do that, so this pump has made that more of a reality for us.”
micaela and her family have also created a community by participating in walks such as the breakthrough t1d canada walk, meeting other couples with children living with the same condition, and joining a facebook group called manitoba families of type 1 diabetes.
if it weren’t for their involvement in the community, they wouldn’t have known about getting makinley on a pump as fast as they did, and for that, they are grateful.
“it just reaffirms the need for gratitude,” she said. “over 100 years ago, the outlook would have been really different for my daughter before insulin was discovered. we’re just so grateful that we have insulin and that she has a shot at life.”
the experience has taught micaela gratitude, but she’s also learned that you should never judge what someone else is going through, because until you understand, you really don’t know what’s going on beneath the surface of what you see.
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“it is a full-time job to manage type 1 diabetes, and there’s never a day off. you always have to be 100 per cent on the ball, making all the decisions, and you have to do it because if you don’t, that’s your life or that’s your child’s life on the line, and life is precious. there’s no coming back from that.”
she continued, “but it really does demand a lot out of a parent or a caregiver, so just a reminder to never judge because, although it looks easy when you just see someone with type 1 diabetes out at the park or the playground or a restaurant, your kid looks like every other kid. at first glance, you don’t know what’s going on. you don’t know what’s going on in their brain, how much work and effort it took to get your kid out on the soccer field.”
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