You know how it is when you let something slide, and then you r-e-a-l-l-y let it slide, and then it’s too late and you’re embarrassed about how horribly you’ve let it slide and you’re past the point of redemption, so you lie awake agonizing about it but can’t bring yourself to do anything about it during daylight hours, so suddenly seven years have gone by and you STILL haven’t had your seven year old baptized? Yeah, that.
Once I finally (finally!) confronted my shame and talked to the church, I found them wonderful and welcoming, and not once did anyone scold me for letting Lucas reach the age of seven un-baptized. In fact, the only thing even remotely like castigation was the priest gently patting my cheek and saying, “come back to Church, child” when I confessed to him at our school’s summer picnic.
Since Lucas will be receiving the sacraments of baptism, reconciliation and first communion this year, and Simon will be receiving the sacrament of confirmation, we’ve been going to church a lot this year. You know what has really surprised me? How much I’ve grown to like it. I find attending mass with the boys a time of peace and calm in the week. I like the singing, and the time to reflect, and the sense of community.
Lucas’s baptism was a delightfully low-key and yet spiritual. The people I love most in the world were there, and there were several other families who also missed getting their kids baptized as infants. (Had I only known, I would have agonized a lot less!) And Lucas so loved the idea that he was dressed and ready for church before half the family was up, and took special care to wash his face and comb his hair so he’d be clean for Jesus.
Both our parish priest and my friends and family are quirky and have a healthy sense of humour, and the day was the perfect mix of community, sacred, and joyfulness. There were selfies with his godparents:
But there were also more solemn moments.
And do you know how you’ve chosen the two most perfect people in the universe to be your third child’s godparents? When they gift him with, I kid you not, a Minecraft version of the bible, old and new testament.
In a way, I feel like maybe we were meant to wait, so this lovely day could unfold as it did, because I really can’t think of a more perfect way to celebrate Lucas and our family’s fledgling reacquaintance with the church. Huh, who would have guessed it? 🙂
In 2013, I had the pleasure of meeting and photographing a charming extended family on a farm just south of town. It was truly one of the warmest, most fun days of portraits and play in the five years I’ve been in business, and since that warm summer day on the farm, I’m happy to have become friends with them as well. Through Trudy and her family, I’ve learned a lot about Type 1 Diabetes, as their youngest son has T1D. Rarely do I open up the blog for guest posts, but I wanted to share my platform with Trudy today on World Diabetes Day, because I really had no idea how a family struggles with T1D, and I wanted to help raise awareness. I also hope that some future family facing the diagnosis and frantically skimming through search results finds this post and finds hope and optimism.
There are two stories I want to share and they seem to conflict. The first story is the one I tell my young son. People with Type 1 can do anything. The other story is about what happens behind the scenes when a person has Type 1 Diabetes. That story is reserved for adults (family and friends), policy makers, school personnel, babysitters, reviewers of insurance claims and processors of requests for disability tax credits.
Type 1 Diabetes (T1D) is an auto-immune disease – for some unknown reason your body destroys the insulin-producing (beta) cells in the pancreas. When you have diabetes, you no longer produce insulin so you have to inject insulin (exactly the right amount each time, based mostly on food and activity) with a syringe or pump infusion, for the rest of your life. Only 10% of people with diabetes have T1D. Most people, including myself and family members, knew little about T1D. We even missed the early symptoms which are warning signs. We are grateful for an informed daycare provider who shared her observations of extreme thirst and frequent urination. We know a lot more now!
Meet my son Dylan, now 7 years old. He was diagnosed at CHEO with Type 1 Diabetes at age two.
Photo courtesy of Dylan’s family
We remind Dylan and his friends there is nothing anyone can do to prevent T1D and nothing you can do to cure yourself from T1D. That’s the one line I hope you’ll remember. Individuals with T1D can accomplish anything and generally speaking, they can eat anything. Dylan is an active young boy and a terrific athlete: he is a skier, he plays hockey, he has won a golf championship and he spends the summer swimming, fishing and paddling with his dog Gracie. He dreams of playing in the NHL, just like Max Domi, who has T1D and started in the NHL this year with the Arizona Coyotes.
Photo courtesy of Dylan’s family
Behind the scenes is the second story, the one about the medical devices and decision making process that comes with management of a complex chronic condition. Some days our kitchen table looks like we’re analyzing air traffic control patterns. We download data from a continuous glucose monitor and insulin pump. These two devices, inserted beneath the skin and rotated to new locations every few days, do not speak to each other. People often believe a pump automatically gives you the insulin when you need it but that’s not how it works. It is based on careful review of logs and records ofr meals/activities/illness/unusual circumstances. You need lots of data to make good decisions. The past data informs future attempts to keep blood sugar in range. It fluctuates every hour around the clock. We are constantly monitoring and making adjustments daytime and nighttime. We calculate insulin to carbohydrate ratios and then figure how many carbohydrates are in an apple, a chocolate chip cookie, a bag of popcorn or mom’s homemade chicken soup with brown rice and quinoa. The number of carbohydrates and factoring in the planned activities is what primarily informs the dose of insulin. There are other variables such as hormones, stress, adrenaline, illness and even weather that mess with our data and make getting the right dose of insulin several times throughout the day and night a real guessing game. It’s hard work to be an artificial pancreas! Insulin will save your life but it can also cause death if overdosed. It requires constant vigilance and we are up several times each night to monitor blood sugar levels.
T1D is considered a disability in Ontario. I didn’t even know that for the first three years we managed our son’s disease! The Canada Revenue Agency explains the eligibility based on Type 1 Diabetes requiring more than 14 hours of Life Sustaining Therapy on the part person with Type 1 Diabetes (or a parent.) This will be for life.
How did I not know? Was I in denial? I was determined to make sure our lives would not change and focused on what was possible, which is everything. That’s still my starting position. Everything is possible with good communication and supports in place. The disability is invisible but requires careful management to keep him alive. In speaking with other parents, I came to understand the meaning of disability and the link to human rights and accommodation; perhaps a few extra minutes is required to take a blood sugar reading in the middle of a provincial school exam or being allowed to treat a low blood sugar by eating a snack that is kept in your emergency kit at your desk when it is not yet recess or lunch time.
Approximately 1 in 300 children have T1D and children under the age of five are the fastest growing segment. Because T1D is pretty rare, we often feel alone. Our school had no record of any previous student with T1D. It was all new. We connected with other families though social media. Children spend close to half of their waking hours at school, underscoring the importance of ensuring that students with T1D are safe and well-managed. Support for students with T1D remains inconsistent across Canada. There are discrepancies in resources and policies across the country, even among schools in the same jurisdiction. A huge advocacy effort is still needed to raise awareness and also to request funding for research.
Our family is well supported by family and friends and this makes a big difference. We are grateful that everything seems possible. We try to lighten the load for others who are on the same path. We participate each year in the JDRF Telus Walk to Cure Diabetes, volunteer with JDRF, meet with policy makers and influencers. With other parents, I helped to create www.sosdiabetes.ca
Insulin was discovered by Canadians in 1921. We’re hopeful a cure for diabetes will be discovered by 2021!
Until then, T1D looks like Dylan! Remember both stories. The visible face of T1D and believing that anything is possible and the behind the scene efforts required to manage this disease.
You may have heard there was an earth-shaking transition in the Canadian government this week. Oh no, not the whole Justin Trudeau thing – although that’s been pretty damn cool, too! No, the transition I’m talking about is that on Monday I started my new job as senior communications advisor on social media for Agriculture Canada. Exciting, right? It was very hard to leave my friends at CRA, and the CRA has been amazing to me in the last four years as I led their social media team. However, I am beyond stoked to be making the jump to a science department, especially in the midst of all the changes happening in the government writ large.
While I will be doing more or less the same thing I’ve been doing at CRA, I’ve learned in the last two days that the job will still be very different. I’ll be doing a lot of preaching and teaching on the use of social media in a professional capacity, for employees ranging from scientists to agricultural trade commissioners. Squee!
The learning curve is steep. In my first two days, I learned about seed potatoes, the TPP, confused flour beetles and geoducks, among other things. Go ahead, do a google image search on geoducks. Are you as surprised as I was to learn that there are no feathers on those ducks? But the people at Agriculture have been kind and welcoming, and our new Minister is from PEI. If that’s not synergy, I don’t know what is. And I love the idea of working with a department that has a stake in farming, and local food, and nutrition, and environmental issues. It’s easy to be passionate about your work when the subject matter is something you care deeply about.
When I was thinking about writing this post, I thought it was an interesting illustration of how the blog has changed over the years. Back in the day, I blogged every thought and whimsy that trickled through my mind, and you knew in (way too much) detail the minutiae of my daily life. You would have seen every angsty moment of the process, from the out-of-the-blue phone call about the vacancy, to me finding out I got the job (during that epic seventh inning Blue Jays game with the Jose Bautista bat flip, no less!) to the nostalgic departure from CRA. Now the whole thing gets a couple of measly paragraphs in a throw-away post.
I’m occasionally nostalgic for the bloggy intimacy of days gone by, and then I’m occasionally validated in my newly-minted taciturnity. Especially, for example, when a child casually mentions eight words at the dinner table that send me mentally scrambling over the last six months of blog posts: “we looked at your blog in school today.” On the smartboard, in class, no less. I guess the teacher had asked if any of the students followed any blogs, and boy child said, “I’m in one, does that count?” His classmates have since complimented me on my photography skills. In that moment, I was very, very glad that I had not yet completed or hit “publish” on the intimate, meandering post I’d been writing during the Blue Jays playoff run, recollecting how my first marriage disintegrated during the 1993 World Series. Procrastination FTW!
So that’s what’s new and exciting with me. How about you, bloggy peeps? What’s new?
Welcome to one of my favourite holiday traditions! 2015 marks TEN YEARS since I’ve been collating and publishing all the Christmas, Holiday and Santa Claus parades for Ottawa and Eastern Ontario and West Quebec.
I feel a little bit like Costco selling its Christmas trees in July by putting up a blog post about Christmas when Halloween has barely slipped from our consciousness, but the first parades are THIS WEEK. One breath and we’re all golden leaves and pumpkins, and then you blink and it’s ho-ho-ho and shovel the driveway! Here’s all the info I could scare up about 2015 Santa Claus parade line-up, in chronological order:
When this family mentioned they had a beautiful carpet of yellow leaves in their backyard, I wanted to make sure I included them in at least some of the portraits. I love this time of year! The leaves were a gorgeous golden yellow that served as a lovely backdrop for a truly adorable family.
It took a little while to get the girls to warm up to me, but I think in the end I won them over. They both have the most exquisite blue eyes and porcelain doll skin, and they were sweet with just the perfect hint of sass. You can see it in this photo, can’t you?
I never would have guessed that such a big part of getting good photos is getting to know the people you are photographing, and what a delightful part of the job it is. 🙂
We had a great time today out at the Lime Kiln Trail with not one, not two, not three but four parts of an extended family for portraits – seventeen people in all. We were all a little worried about the weather, but with a little flexibility, a little luck and a lot of good humour, we managed to squeeze our portrait session into the very best part of the day.
Nine kids between the ages of three and 13? No problem when there is a most excellent climbing tree nearby!
I hope your day was even half as much fun as mine was! 😉
