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Living with Diabetes

mySugr moms and their children with diabetes

5/9/2015 by Scott Johnson

mySugr moms and their children with diabetes

My colleague Clara asked several people in the office to interview their mom about having a child with diabetes. She wanted to hear the story of her mom and of other moms out there. She wanted to give all parents of children with diabetes stories to feel close to, anecdotes to laugh at, and wisdom to look up to. I think she has done that, and more. With a special post, just for Mother's Day, here's Clara...

The day you learned your child had diabetes

When my mom, Isabelle, and Nicole, Kyle’s mom, heard the diagnosis news, they thought it wasn't possible. Marlis’ mom, Karin, felt like someone pulled the rug out from under her. Anne’s and Scott’s mom took it a bit more smoothly. Scott’s mom, Patricia, being a nurse, knew more about the illness and could more easily take the hit. After that, all of them got to work. Anne’s mom, Elfrieda, made sure the whole family followed the same diet so she didn't feel different. Scott’s mom invited his four grandparents to join the diabetes education course, so everyone knew more about it. Nicole got rid of all the sweets in the cupboard before learning she could keep them without creating disaster. My mom came back to being the good student she's always been and learned all she could about diabetes...

Whichever mom you relate to when you read this, know that there is no good or bad way. Learning your child has diabetes is shocking and confusing and can lead you to make radical decisions or just bring you closer. What’s important to know is that you’ll be there for them – no matter what. And that, ladies, is all that matters to us too.

I love you, mom, written on a note paper

Keeping up

During the first year after my diagnosis, I asked my mom every single day: “why me?” and I refused to do a single injection. She felt uncomfortable and guilty. But she made it through it and I finally reconciled with my needles and my diabetes, even going to diabetes camps and hanging out with other diabetic kids. Nicole had to face the undetected up and downs of Kyle which made him go a bit out of control. She had to help him go through the stress of his sports competitions and the anxiety for exams which stretched him to his limits. Talking openly with Kyle has been the key for her. It enabled her to remind Kyle that his health was more important than anything else.

Kyle and his mom sitting at a picnic table

Scott, Marlis, and Anne made it a bit easier on their mom becoming autonomous and managing their diabetes like champs early on! Support and trust from their mom helped on this path. Whichever story hits home for you, one thing was common to all the moms we interviewed. They got help. They turned to friends, family, care teams and support groups for parents of kids with diabetes. Also, they helped themselves, by trusting their child and believing in their abilities, believing they would not give up, and that they would become strong.

Leaving the nest

Letting go and granting your kid some independence can be twice as hard for parents of children with diabetes. There’s not only the stress of them finding their way through life, but also the worry that they will have to manage diabetes all by themselves from then on. For some, like Nicole and Anne’s mom, they felt from the start that Anne and Kyle were responsible. Nicole knew that she wasn't the only one able to support Kyle anymore and found it comforting that he could turn to friends when he needed help. For others, like Marlis’ mom, it wasn't easy to deal with her leaving to live alone. She had to keep herself from stressing out for 3 years before her sister moved in with her. My mom had to stop me from going to study on the opposite side of France when I was 17 years old. We had to agree that I'd stay near home to study, but she wouldn't ask me a single thing about my diabetes. I managed everything myself from that day and left 2 years later to live in Canada. Do not underestimate the power of compromises. 

Male Eastern Bluebird (Sialia sialis) in a tree with cherry blossoms

My personal advice, let your kid fly away. It is fair to want reassurance that we can deal with things by ourselves. But don't forget to let us go. Diabetes cannot stop anyone from living a full and active life. The only limits are the ones we place on ourselves.

A step back

We all asked our moms that one question: what do you think of it all now? For all moms, a similar theme came back. They saw that we were able to live the life we wanted. Kyle’s mom still wishes she could take the diabetes away but is proud to see that Kyle helps others accept their illness and that he’s living a full life travelling the world, with some great sporting achievements along the way. Anne’s mom says: “diabetes is not for wimps [but] life only gives you what you can handle”, a good philosophy when it comes to facing obstacles. My mom is happy to see that, contrary to what she thought, it is possible to forget about diabetes sometimes and just live life like anyone else.

Closing thoughts and wise words

We finally asked our moms, what they'd like to say to other moms of children with diabetes out there. Here’s their advice: Keep cool. Ask a lot of questions and do not panic. If you panic, your child will do the same (Anne’s mom). Don’t face it alone (my mom). Your child will not be able to take a vacation from diabetes, but with the latest technology he or she will be able to live an active, successful life. Your kid should never “give in” and neither should you. (Kyle’s mom) Chin up! Your kid can do everything they want. Of course, there are ups and downs, but in general everything usually works out fine. With the help and support of family, friends, and health care professionals, you can do anything. Finally, from Scott’s story, he made a heart-warming testimony about his mom, and it deserves to be the last words to accompany you on your path as parents. Scott’s mom couldn’t answer in person as she passed away some years ago, but there’s one thing he treasures: “my mom taught me one of the most important lessons ever, and it’s one I try to live fully each and every day: I never use diabetes as an excuse for anything otherwise people will do so without my permission”.

A young scott, six or seven years old, and his mom

Thank you, Clara! Special thanks to Nicole Rose, Isabelle Murard, Elfrieda Kainz, Patricia Johnson (1950-2005), and Karin Schosser. Thanks to all moms out there who support us, get us back on our feet, trust us and give us the confidence to go accomplish our dreams.

Scott Johnson

Almost famous for his addiction to Diet Coke, Scott has lived well with diabetes for almost forty years and is currently the Patient Engagement Manager, USA for mySugr. He's been an active pioneer in the diabetes social media space for more than fifteen years and manages his award-winning blog, scottsdiabetes.com when time allows.

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