My daughter is currently in a city 4 hours from here without a parent.
This is it: the moment I thought would never come. No way. No how. She would NEVER grow up. At least not diabetes-wise.
I'm stunned that it's happening and even more stunned that I'm completely okay with it.
I was welcome to go on this trip- a service trip with the church's youth group. But this seemed, for several reasons, like the ideal opportunity for her to spread her wings.
-She's as ready as she'll ever be. She proves it every day. She especially proved it on the high school's spring music department trip which I, of my own free will, volunteered to chaperone so that I could be there 'just in case.' There was no 'just in case.' She did it all by herself while I shared a room with a (as it turned out, perfectly nice) stranger and worried endlessly about the whereabouts and safety of the rest of the kids.
-This trip is relatively close, just a four hour drive should I need to get there. And it's in the middle of a major city so there are hospitals, ambulances and pharmacies readily available should she need them.
-It's a small group: 6 kids and 2 adults. One of the kids is one of my daughter's closest friends. These kids genuinely like and care about each other. The chaperone to kid ratio is pretty great too.
-Speaking of chaperones, if I had to pick two people to send my kid away with for the first time, these two adults would be at the top of my list. Their willingness to take this on was, of course, one of the essential criteria. They're also responsible, concerned, and willing to learn everything necessary to support my daughter. And, probably most importantly, my daughter trusts them and likes them and will therefore include them in any issues she's having- diabetes-wise, and otherwise too.
-Lastly, and probably most importantly, my daughter was willing to go without me. That's been the bottom line for every big step towards diabetes independence we've made thus far. This decision was no different.
So far so good, considering the fact that diabetes does not travel well. One HIGH with double up arrows on the Dexcom required an emergency site change. An 82 at bedtime required some thinking about what to eat in order to make it until morning (a cherry Nutrigrain bar with no insulin- and yes, she made to morning). Otherwise she's guessing carbs as well as I could, remembering to carry her sack of dia-stuff, and keeping an eye on the Dexcom. I'm grateful to have the Dexcom share so I can check in when I'm worried, but I'm checking less than I thought I might.
Meanwhile she's having a huge adventure, both with the volunteer projects they're doing and with the sightseeing opportunities they're squeezing in whenever they can.
It's hard to wrap my head around how we got from a teeny, tiny person with diabetes who was totally dependent on me for every aspect of her care to this particular moment. It wasn't one giant step. It was a million teeny, tiny steps and suddenly, stunningly, here I sit over 200 miles away. And, inexplicably, I'm really pretty okay with it.
"The lady with the Omnipod is still at the pool with her kids most days," my daughter reported the other night.
"And there was another woman there. She had a pump clipped to her bikini top but the tubing was connected to her hip. It would make sense if the site was in her arm maybe. It looked uncomfortable to me. Or like you could accidentally yank it out with your own arm somehow- but whatever I guess...it's up to her."
It's summer again, which is prime pump-sighting season, especially at the pool and the beach.
Last years' beach vacation tally was 2 dexcoms and an Omnipod. Our town pool tally was 2 omnipods and a tubed pump a little too far way to identify the brand of. Walking around various cities and towns added 3 more pumps that I can remember.
We've never spoken to any of these people about their devices.
But we always speak to each other about them. "That guy has something on his stomach...over there by the purple striped umbrella...is it a Dexcom or an Omnipod?" Or "That lady's making me nervous standing knee deep in the water- over there near the jetty- I think that's a Medtronic pump, right- those aren't waterproof are they? The tide's coming in fast." We discuss where the devices are worn, attempts to disguise them or not, and how far down the beach the people with diabetes walk without bringing a meter or a container of glucose tabs with them.
It's fascinating to watch other people with diabetes in the wild. It's also comforting since every sighting-spurred conversation boils down to this: "Hey- look- there's another person with diabetes just living life," and especially at the beach or the pool, "and having fun."
I met a woman the other day who was an occasional substitute nurse at the middle school. While this was the first time we'd met, she knew my daughter well. There are others like her.
I have sent my child to school, on field trips, to birthday parties, to marching band camp and more. The older she gets, the more people we collect who've helped her with her diabetes care. Some I know well, some I've been introduced to, and some I've never met.
I wonder if the people in whose hands I've left her fully understand how I feel about them.
These people have taken my child's life in their hands. Maybe they don't realize that, or look at it that way. I certainly wasn't going to point it out in quite those terms to the preschool director who agreed to accept her into the program. Those weren't the words I used when I thanked the parents who invited her for her first sleepover. But these, and many more adults, have been aware that having my daughter in their class, in their home, or in their field trip group necessitated an extra level of responsibility and vigilance.
If taking on that level of responsibility wasn't enough, these people have, quite often, gone above and beyond what I would have expected. Parents have contacted the birthday party venue for carbohydrate counts on food. Teachers have requested to be glucagon trained for my child's safety. Chaperones have sat with her while she stopped to check her blood sugar. Guidance counselors have called about 504 accommodations I never would have considered. Nurses have called just to reassure me that everything was okay. I'm incredibly grateful for every one of these thoughtful acts.
Being the parent of a kid with diabetes is a huge job. Being a kid with diabetes is an endless challenge. We're incredibly grateful for the people who step in to ease the burden in whatever ways they can.
Last week, diabetes had the upper hand. It issued a series of decrees.
*Alarms will sound nightly from midnight until four a.m.
*You will wake a sleeping teenager for Cookie Monster Juice at least twice per night.
*Delirium will lead you to wonder if the nightly need for multiple juice boxes has something to do with the Cookie Monster themed branding. As in, 'Me Want More JUICEEE.'
*You will wake each morning to say, or to hear your child say, "Uck- juice box breath again. This is so gross."
*You will become so exhausted by overnight low blood sugars that you will increasingly limit dinner and bedtime boluses until the alarms turn from low to high, though still reliably from 12-4.
*You will try multiple tactics to stabilize overnight numbers and each will backfire more mysteriously than the next.
Diabetes, I have news for you. You don't get to win.
We issued only the only decree we need:
*We will not give up.
With perseverance and patience the trend is abating as mysteriously as it appeared. Maybe we finally made the right basal adjustments. Maybe we fixed the bolus dosing for the evening hours.
Or maybe it's all because we switched back to Juicy Juice boxes.
I thought armchair medical quarterbacking might be a unique diabetes phenomenon. People who live with diabetes often hear these kinds of things:
That new pump with automatic shut-off sounds like something everyone should have- when are you getting one?
I can't believe you let her go to the carnival without an adult- that seems so risky.
My coworker with diabetes completely eliminated carbs and she's doing great! You should try that.
My nephew never had a 504 plan and he graduated high school with straight A's and a 1300 on his SAT's. Why would you have one for your daughter?
I happen to be spending time with a few different people these days who have medical conditions other than diabetes. I'm learning that we diabetes people are not alone. The free dispensing of unsolicited advice crosses many disease platforms. I've heard 'suggestions' like:
I never went to a doctor for my rotator cuff issue- my chiropractor is amazing. Alternative medicine is the only way to go.
My cousin had that kind of cancer and never considered new or experimental treatments. It seems really risky.
Dad wouldn't have put up with the pain long enough to try physical therapy and pain management for his back issue. He went straight for surgery. I can't believe you're going through all of that.
There's a catch-phrase in the diabetes community: Your Diabetes May Vary (YDMV). In many ways it applies to other physical conditions too. There are so many reasons (more than this short list) that different treatments and lifestyles work better for different people with the same diagnosis:
-First of all, the diagnosis might not be quite the same at all...type 1 vs. type 2, different kinds of back injuries, different kinds and stages of cancer.
-A condition can physiologically manifest itself differently in a different body.
-Insurance coverage and ability to pay can influence medical choices.
-Education and prior life experiences influence decisions people make about treatment.
-Quality of life has a different meaning for everyone, leading to different tactics for managing a health condition while living a full life.
I think it's okay, if not downright helpful, to talk to each other about the different ways we manage diseases. We can certainly learn from one another, and it's often useful to hear and to try new ideas. What's not helpful is insert assumptions or judgements into the conversation. It's important to respect and support the decisions people make, even if they're different than yours. What works for one may not work for another.
At least, diabetes friends, we're not alone. It turns out that Your Disease, Discomfort, Distress, or Dietary Restriction May (Also) Vary. And that people have opinions about all of them.
Lets wrap up the week by sharing a little more about ourselves, beyond the chronic illness we or our loved ones live with. Share an interest, hobby, passion, something that is YOU. If you want to explore how it relates to or helps with diabetes you can. Or let it be a part of you that is completely separate from diabetes, because there is more to life than just diabetes! (This topic is a suggestion from the 2016 #DBlogWeek survey.) For more 'more than diabetes stories,' click here!
I like to collect plants.
Not fancy plants, and definitely not fussy plants which need any real attention.
I like plants with a little history, plants which remind me of people or places that are special to me.
Here are a few things which happen to be growing or blooming in my yard today:
The first rosebud of the year.
The bush was in full bloom in the front garden of the house when we moved in.
I love that we see the roses through the living room window.
Lily of the Valley transplanted from my childhood home's garden
We went to a local public garden's plant sale the first year we lived in our house.
I purchased a small bleeding heart plant, divided from one on the garden's grounds.
It's now threatening to take over the corner of my yard.
These Japanese iris, also in the front garden, came from my husband's
Today let’s revisit a prompt from 2014 - May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope?
I present to you the story of the events of Monday morning, with words describing our wide-ranging emotions about said events highlighted in bold print:
On Monday, my kid arrived at school anxious- not about the first day of standardized testing, but about which teacher had been chosen to proctor her private testing room. Her 504 plan has accommodations allowing her to stop and restart testing to deal with any diabetes issues, so she is separated from other kids since her test might be timed differently than that of others. "It's so awkward, mom, I hope it's a teacher I know at least." She checked the list posted in the school lobby and was confused. She had, inexplicably, been assigned to a room with a large group of special education kids. The texts to me began...
"Help! What do I do?"
"Go to guidance and explain that you've been told you were testing alone."
We texted back and forth for 25 minutes or so while she sat in the guidance office. People came in and out asking her questions and then disappearing for stretches of time. All of the teachers not assigned to a testing room were summoned to the principal's office via the PA system. She eventually stopped answering my texts at which point I assumed the situation had been resolved and that she had started taking the test somewhere- with someone.
Scrolling back through those texts, the words and emojis described the following emotions:
Those were interspersed, because how else were we going to cope, with
In the end she was relieved that it got resolved, and amazed that the stress hadn't spiked her blood sugar. We were surprised that the rules required 2 teachers to be in the room with her and thankful that they were two teachers she knew and liked. They helped her settle in well and she feels confident about how she did on the day's tests.
In the end, I was proud of her for handling the situation herself and happy that technology allowed me to support her via text.
I would be embarrassed, however, if school officials discovered the number of circus-themed emojis I sent over the course of the morning.
While this story highlights in a somewhat lighthearted way how diabetes can lead to a wide range of emotions in just an hour of every day life, the possibility of long-term serious mental health issues is real. Depression, burnout, anxiety and other mental health issues impact most people with diabetes and their caregivers at one time or another. To read other perspectives on this topic, click here.