Super glorious I can do this moment #dblogweek

May15

Wednesday 5/15- Today we’re going to share our most memorable diabetes day. You can take this anywhere…. your or your loved one’s diagnosis, a bad low, a bad high, a big success, any day that you’d like to share.

A while back I had a ‘guest post’ from Ms Ave who imagined a day without diabetes. Today I’d like to host the infamous lilG and his most memorable diabetes day.

This is what he would like you to know about him. lilG’s 60 yard touchdown His first football success. I wish I knew how to post the video clip here…

His first post diabetes diagnosis moment of ‘I can do this’ glory; and a super glorious moment it was too!

It was chance that had us recording at the right time. He loves to watch the clip and you can see his heart expanding, his love for himself expanding as he watches. He needs this affirmation, this visual evidence that his body isn’t ‘broken’. A super glorious powerful moment when you fall in love with your abilities!

my petition: where I dream & bite off more than I can chew #Dblogweek

May14

Today’s Topic:
We, The Undersigned – Tuesday 5/14
Recently various petitions have been circulating the Diabetes Online Community, so today let’s pretend to write our own. Tell us who you would write the petition to – a person, an organization, even an object (animate or inanimate) – get creative!! What are you trying to change and what have you experienced that makes you want this change?

When I think of writing a petition there’s two that make sense to me. The first is on the spiritual side. It would be a petition to the Creator and angels to ease my children’s path and guard over them. So far, this petition has been answered. Although, I wouldn’t mind if the cure for diabetes was pushed through either .

The second petition is one that’s already been written. Not just a petition but a Bill that I believe didn’t get past second reading in the Ontario legislature. I would petition the Ontario government to effectively and consistently address type 1 diabetes in Ontario schools. I’d like staff willing to assist with diabetes management. I’d like staff willing to create an environment of safety for my children. I’d like a school system that respected their medical needs and didn’t try to shove them in the ADHD corner, the non-compliant corner, the don’t ask any more of us corner.

I get that teachers are meant to teach; not nurse, not counsel. I get that their classrooms are maxed out and they are burnt out in some cases. For me, this is not a rant against teachers. I don’t hate teachers or disrespect their work. I do think our education system is deeply broken and they are muddling along as best they can. My petition isn’t a request for teachers to do more or be more, but for the whole system to support my children. Yes, I need the teacher in the classroom to be alert -but maybe that teacher needs someone else to back them up, to take on another task. I really don’t know what that would look like as I’m not an educator.

This is where my petition goes way beyond the basic hope for safety and diabetes management of my children. More into a dream I have of an education system that not only supports my children’s diabetes management and safety but actively promotes their entire well being. Promotes their successes, their abilities, their achievements, their creativity. I dream of a school system that values all these positives and lets them step back a bit, regroup when diabetes is beating them down. A system that is flexible enough to say, today is not the day you will be successful in this test. Maybe this isn’t even the week to expect you to sit quietly and manage listening. There’s another way you can learn this week.

I’m not an educator. I’m not an expert on school or education but I would join any committee or initiative that said ‘let’s take a look at this together and be open to fundamental changes’. I’ll even try to stay under budget- well, under budget’ish at least.

Oh endo! You should know…

May13

It’s late, really late for a d-mom like me, and I just finished watching a heartbreaking Leafs-Bruins game. On top of that tomorrow is our endo appointment for all three kids. Last night the numbers were “bad”. In fact, if we’re going to go there, the last few months the teenager’s numbers have been ‘bad’. Except there’s no judgements with numbers, right?

That’s probably all I want the endo and team to know. I wish they’d stop downloading the pump numbers and having secret meetings before the meeting with us. I wish they’d stop testing A1c’s at every clinic visit.

They are just numbers. They don’t tell the full story.

They don’t even begin to tell the story of my sleepless nights. My perpetual brain fuzz from calculating carbs to insulin to activity to emotional state, 24/7 endlessly. The numbers don’t reflect the hours I spend trying to understand the complex relationship of type 1 diabetes and emotional health. The hours I spend connecting, reading, listening and social media’ing to understand, to learn learn learn. My guilt over having never achieved perfection. My tears over watching seizures from insulin shock or vomiting from ketones. The numbers don’t ever tell the story of the tiniest most painful place in my heart where I hold out hope for a cure.

I wish they’d start a meeting by asking what we are achieving despite diabetes. I wish they’d sit across from me, relax their arms and ask how have things been? I wish they’d marvel with me at the boys football successes. I wish they’d ooh and ahh over Ave’s first place finish in her adventure racing. I wish they would say: what is it like to live in your house? Where are the pressure points? I wish they would show up at my kids school and doctor babble all the principals and learning resources and teachers into realizing this type 1 diabetes shit? It’s fuckin hard.

I wish my endo and team would say: you are doing well and it’s not an easy thing to do.

Happy not-quite-what-i-expected Mother’s Day!

May12

Happy Mom’s Day to me, my moms, & all the moms of the world. I think the one thing we probably all share is the surprise that it’s not ever what we expected, and yet it’s still pretty wonderful & amazing.

Instant Heart Attack, just click open

May7

Right. Yes. I received this message from my daughter’s phone today at 2:15pm. I wonder if you can imagine the moment after I clicked open.

‘My heart skipped a beat’ doesn’t really begin to cover it. I don’t think I took a breath again until 2:20pm. In that five minute period I grabbed my keys and flew out the door to my van. Started the van and then realized I was at least 35 minutes from her school. Realized that she was in school and didn’t have her cell phone. Realized that the timing of this message did not make sense AT ALL.

Breathing re-started. Brain re-started.

Still, not being a techno-whiz, I thought perhaps she had managed to email me from a computer. Also, because our school has no nursing staff I knew I wouldn’t have any relief from worry unless I talked to her. I called, Ave was fine. No issues and good numbers all day.

Deep breathing re-started. Little brain wheels start whirling. Where did this email come from? how did it get sent at 2:15 in the afternoon?

“Looks like we have another mystery on our hands, gang!” (loved Scooby Doo).

Yes, with my keen investigative work (I have all the kid’s schools on speed dial and both boys were fine all day), my superior evidence gathering skills (found the phone under a pillow by calling it) and my powers of interrogation ( ‘the look ‘ that instills fear of extra chores in all my children) I was able to deduce the culprit.

lilG, in the bedroom, with the wifi connection.

He was playing with Ave’s phone last night and thought an emergency would be a great way to get me to bring him a snack upstairs. Somehow there was a delay in the text to email service.

Deep breathing. Deep deep breathing…

The starting line is where we’re winning

May4

Ave and lilG have participated for almost three years in an adventure running club for kids. They love this program and today the club held race 2 in a spring mud run series. Both of the kids were nervous last night as the competitive streak runs pretty high in all my minions. It doesn’t matter how many times I tell them the point is participating and having fun. They want to win. It’s a great thing to want to win I suppose, and as long as it’s tempered with fairness and good sportsmanship I really can’t complain.

There’s quite a bit that goes on behind the scenes for my kids to race. Basic good blood glucose control and healthy eating of course. Add in non- bouncing insulin pump pouches, and low sugar supply pouches too. A quick review of what to do if you’re out on the course and having low blood sugar issues. Today, I was sweetly surprised to hear them sharing tips on aerobic vs anaerobic exercise and how to raise blood sugar by stopping to do some push ups if needed. Then there’s the last minute pre-race glucose checks …

and they’re lined up to go!

I feel pretty sure I was the only parent who had tears in their eyes at the starting line.

It’s the starting line where it really hits home to me.

In those moments waiting for their race to start that I find myself filling with gratitude that my children are alive. Filling with gratitude that while it’s imperfect to have to stay alive with insulin injections, alive they are. Filling with gratitude that their future and opportunities are rarely limited by type 1 diabetes. Yes, there are extra steps that go into everyday life and athletic endeavours but they are not insurmountable. I find myself reflecting on the number of people who provide the backdrop for my kids success. The healthcare providers, family and all the people who help keep their dad and I sane so we can keep on keeping on.

It really is the starting line where I feel we have already won the race.

The medals are just the gravy.

Ice cream, diabetes & the big questions

Apr17

Tonight after running I took Ave and lilG to get some ice cream. Spirits were definitely high with our spontaneous little treat. We took our ice cream to go because we were all covered with spring mud.

Merrily we were driving along, when out of seemingly nowhere, lilG asked me if his own kids would have diabetes? was it in his DNA? A beautiful opening for a mumma such as myself to talk about current research and all the big ‘we don’t know’s’. His sister added in some of her thoughts about cures in mice and artificial pancreas videos she had seen.

I was really pleased and happy that lilG was asking his questions… until his next question brought a sharp pain to my heart… the question I’d guess he really wanted to ask…

Mum, did I do something wrong that I got diabetes?

I know it’s completely developmentally age appropriate yadda yadda yadda ya BUT it hurts so bad. Hurts to wonder if he has been holding that BIG BIG question inside for years. I’m so glad he got it out. I’m so glad he finally asked it. I managed to keep calm and reassure him that it was absolutely not anything he did wrong that led to his diabetes diagnosis. We talked about how nobody knows for sure why but that it was nothing he did, or his sister did or his brother did to be diagnosed with diabetes.

He seemed satisfied with my answers and our discussion. He easily moved on to his next topic ( yes it did relate to excessive gas after beans ).

As he moved on to other subjects tears rolled down my face. There are days where I think I have no more tears left for diabetes. Today isn’t one of those days.

luvleamum

mumma pancreas to 3 Kids living with type 1 diabetes