Hey there friends! Today I come here to share a little bit about my good friend Erin and her son Finns experience with Type 1 Diabetes (T1D). November is Diabetes Awareness month so this seemed like the perfect time to share this post (it also happened to coincide nicely with when we are able to finally hammer this thing out together as two busy moms). Back in the summer I had approached Erin with this idea, asking if it would be ok to take a few shots of Finn and her and if she would be willing to share their story. Luckily she was game!
Just over a year ago, I was sitting at work and sent a quick text to Erin confirming thatt we were on for a family photoshoot that weekend. She replied “Sorry I don’t think we can. We’re at the Stollery. Finn just got diagnosed with Diabetes”. I can barely type that out without a shiver washing over me. I can’t fathom what it must have been like for Erin and her family that day. A flurry of texts and expletives later, Erin had me up to speed on what had happened leading up to Finns diagnosis. It’s honestly quite terrifying and could happen to anyone. That is one reason I wanted to write this post, so together we could help shine a little light on this terrible disease.
Another reason this post came to light is during my last pregnancy, I developed Gestational Diabetes which luckily for me is temporary. It gave me just a short taste of what Erin and Finn have to deal with on a daily basis and LET ME TELL YOU… I am a 29 year old woman and even I was in tears dealing with some of the stuff surrounding Diabetes. I became more educated in exactly what is involved around testing your blood sugar, calculating carbohydrates, and injecting insulin. The thought of dealing with this as a parent, and the thought of a 3 year old boy having to endure this absolutely broke my heart. Erin was a great resource for me during that time and shoulder for me to cry on when things were hard. I asked Erin to answer a few questions which are down below, but I also wanted to do something myself. For any session booked with me during the month of November, you’ll receive 50% off your session fee, and the other 50% will go directly to the Juvenile Diabetes Research Foundation (that is $175 savings for you, and $175 to the JDRF). Feel free to contact me for more details.
Here is what Erin had to say!
When was Finn first diagnosed and what was that like?
Finn was diagnosed with Type 1 Diabetes (formerly known as Juvenile Diabetes) on July 16th, 2017 at 3 years old. By the time he was brought into the ER, he was in diabetic Ketoacidosis (DKA) a serious and life threatening condition when the body begins burning fats as response to there being no insulin in the body and being unable to use blood sugar as a source of fuel. The first 24 hours were heart wrenching as we watched our little boy lay in an ER bed covered in IVs and monitors. As the doctors explained they would need to lower his blood sugar very slowly to avoid brain swelling, we began to understand the severity of the situation and how close we were to losing him.
What kind of signs and symptoms did he have?
The first signs that Finn displayed were increased thirst and frequent urination. Because his symptoms began at the beginning of summer, we simply thought it was because he was spending all day outside playing. The weather was hot and he was running in the sprinkler- of course he’s going to be drinking/peeing more. Then he began having intense mood swings, not wanting to play and begging me to take him home whenever we were out. Again, we felt maybe he was just being a typical three year old having tantrums. Then he began experiencing stomach pains. He would cry out in pain and then they would pass and he would be himself again.
I took him to see our family doctor. Even as he was examining him, Finn was bouncing around the exam table happily. “A bladder infection,” he suggested, a common misdiagnosis of type 1 along with stomach flu, strep throat or growth spurt. He sent us home with a requisition form to drop off a urine sample at our local lab. That evening Finn began throwing up and we knew something was wrong. My sister-in-law (who has type 1 diabetes) quickly came over with her meter after we described his symptoms to her. A normal blood sugar should be between 4-8mmol. Finn was 30.4mmol. After hearing many stories similar to ours, I know now that had we continued thinking it was a bladder infection and sent him to bed, our story could have had a tragic ending.
What did the first few months post-diagnosis look like for your family?
The first 6 months post diagnosis was the most overwhelming time of our lives. Finn spent a week in the hospital with Scott and I taking turns sleeping there. Then we spent a week in class learning how to keep our son alive. There are so many variables in diabetes management that you try and soak up as much information as you can during the most sleep-deprived time of your life (we were waking every 3 hours to make sure his blood sugar didn’t drop while he slept.) Every meal became a careful calculation of carbohydrates to ensure he had enough insulin to cover his food but not too much to drop him into a dangerous low. There were endless appointments, phone calls and emails to our team at the Stollery.
As luck would have it, our precocious little 3-year-old was amazing at adapting to his new “normal.” The needles were the hardest part for him but he quickly became brave and simply wanted a say on where he would be injected. We are still so proud of how resilient and accepting he has been. He proudly began wearing a continuous glucose monitor (CGM) that allowed us to stop poking his finger 20 times a day and stop setting alarms to check throughout the night. The CGM sends his blood sugar numbers to our phone every 5 minutes and alarms if he drops or rises outside his target range.
Looking back what were things that would have been helpful for you guys in this transition period?
Overall, I believe the Stollery gave us amazing support. We were given the tools to calculate his insulin doses/food at home, 24h call number, contact information for a type 1 parent mentor and home-care nurse who came for our injection times those first few days at home.
The only thing that would have improved things immensely from the beginning would have been the ability to start on an insulin pump quickly after learning injections. Finn’s insulin needs are so small that sometimes we were injecting single drops of insulin, eyeballed on a syringe. It was impossible to give an accurate and consistent dose. While our insurance would have covered the cost of a pump, Alberta Health requires we go through their program (and wait list) to ensure they have enough staff to support those new to pumping. We also found an amazing community of type 1 parents in groups on Facebook. There I have been able to ask questions in the middle of the night and, because of the nature of this beast, there is always a parent somewhere who is also awake and willing to help.
What were some of the hardest things to adapt to as you learned to live with type 1 diabetes?
Before Finn was diagnosed, I had no idea the work that went into managing this disease. The only people I knew with type 1 were adults and, from my limited perspective, they dosed before meals and went about their day. I didn’t know how carefully they dosed for what they were about to eat, adding each item, considering each ingredient, as to not give too much or too little. I didn’t hear their their worries or fears about the long-term effects of living with type 1. I didn’t know how quickly a misstep could result in a life threatening emergency.
The truth is that this disease touches every aspect of our lives: the way we eat, how much we sleep, our day-to-day activities. We vowed not to let it hold Finn back in any way, it just requires much more planning on our part. He doesn’t know any of the dark details. We will carry that weight until he is old enough to take on his own care and must know.
What is some advice you have for parents who may be going through something similar?
Just take it one day at a time. This disease seems much more menacing looking too far ahead. Instead, just remember that the numbers aren’t a pass/fail grade, only information to help you make decisions on the next step forward. The disease itself doesn’t get better, but you will get better at rolling with the punches.
What are the best ways people can help fight this disease?
Thanks again Erin for sharing Finns story. I have also mentioned before that I sit on the board of Caregivers Alberta. This is a really important organization that helps caregivers to take care of themselves, even though they are caring for someone else. Not all caregivers are helping the elderly, and we often forget to take the time for self-care when we are in these types of situations.
I hope you enjoyed this post and share away for Diabetes Awareness month!