Two moms talking about our families' lives with type 1 diabetes
by Kristin Stringer (guest writer for Waltzing the Dragon)
Sitting by your child’s hospital bed, at 2am, can be a very isolating experience. Aside from the noise of the unit, beeps of monitors, and occasional pages over the intercom, the room can be quiet, and still, and scary.
My family was introduced to the dragon of type 1 diabetes in March 2014, when our then 9 year old daughter was admitted to hospital in severe Diabetic Ketoacidosis (DKA). The initial blur from when I carried her through the door of the Urgent Care clinic, to our ambulance transport to Children’s Hospital, and admission via a trauma room, I had my phone in my hand. I was texting family and friends, asking for prayers, to help plan care for our other children, and to bring my husband onsite with us. My phone was a lifeline.
Within hours, a dear friend had connected me to a family from my husband’s grad school days, whose son also had type 1, and the mom and I were messaging each other. She was in another time zone, another country, but she knew what I was facing – immediately, and longer term. A text alert at 2am was a connection to something, someone outside that hospital room. Suddenly, I was no longer sitting alone in the dark, next to the hospital bed that held my very sick little girl. I had connection.
By the time we got home from our time at Children’s, I knew we were going to need a larger “been there, done that” community. We were, at the time, still very new to our city, our family all lived in another province, and we didn’t have a large support team. I had to find one.
I have been plugged in to online communities for years. I had been active on a couple of message boards for over 10 years. I had a blogging history, which helped maintain contact with loved ones during previous major moves. I knew that community was out there. People who knew the dragon that type 1 could be to live with. I was hungry for it. I wanted to hear the voices of parents who were also getting up at 3am to test blood glucose. I wanted to hear the wisdom of adults who had been those children, and were now living with type 1 as grown-ups. I really wanted to hear that there were adults, living with type 1, who were (mostly!) normal people, living their lives.
They all exist. Facebook has groups, formed around geography, or life stages. Instagram has shared tags over various aspects of life with type 1. Twitter has various advocacy groups that offer weekly chats – some of which can be serious, some can be downright laugh out loud hilarious as people process various parts of living with type 1. There are so many blogs and advocacy groups with websites to read, and respond if you feel led. Online, you can be more vocal and chatty, or more quiet, and read various perspectives and ideas you maybe haven’t yet considered. My daughter and I found podcasts, where actually hearing someone speak about type 1 has broadened our perspectives, made us laugh, and occasionally brought us to tears. I have connected with people across the country, across the world, who have helped me see the struggles, the humour, the advocacy opportunities, the shared experience that living with type 1 brings to lives. There are local groups to make more connections in many major cities – those are extremely important to discover as well. Some people I’ve “met” through type 1 have been people I’ve encountered online first, in person came later.
Finding those online resources and supports has been a huge help for me. It’s helped me learn, grow, and assists me with finding my voice as an advocate for my daughter. As she is getting older, and starting to venture into the online world, she can also make new connections, and find her own community beyond the one she has in her day-to-day life. For us, the best part of online connection is discovering there are voices out there who can loudly say “you do not walk this alone”, even at 2am.
Where do you get support?
Your advice to someone new on finding support?
Kristin Stringer loves coffee, conversation, and creativity. She has lived in 5 provinces in Canada, and considers herself to be home wherever her husband, three middle/junior high school aged children, and slightly neurotic dog live, which is currently Calgary, Alberta.
For more about families living well with type 1 diabetes, visit WaltzingTheDragon.ca.