Tuesday, December 5, 2017

A Mother's Story

There is a special place in my heart for those that spend countless nights awake tending to their children with type 1 diabetes.  I see the posts of those warrior Diabetes Moms or Diabetes Dads and recognize that often times this group is missed and under appreciated by health care teams, their family or their friends because it is simply hard to grasp how many hours these caregivers put in, and how many tears they shed behind closed doors.

Recently, a post by a Diabetes Mom, Kathy, really stuck with me.  She stated that, 

"I know I say this every three months but today will be the worst diabetes clinic. Her numbers have been so high over the last three months and I haven't been able to get them under control." 

I read this and thought to myself, she is taking the blame. She is taking this disease, that I know first hand does its own thing most of the time and she is placing that blame on herself. That isn't fair. I couldn't help but think about how many other caregivers are feeling this blame. I reached out this mom and decided to ask her a few questions to shed some light on what a diagnosis means for a parent of a child with diabetes. 

When Kathy's daughter was diagnosed the family felt devastation.  She thought that the doctor's made a mistake and she waited for that moment when they told her that her daughter didn't actually have diabetes and they could go home.   Kathy states that, "This moment changed everything." Kathy describes the diagnosis as feeling like a burden, and something that she did not know how to manage. 

"My daughter didn't adjust well to her 'new life.' She would have to be held down to get her blood sugar checked or to get insulin. I remember her begging us not to do this." 

Kathy remarked that it was one of the most heartbreaking thing she has ever had to experience and it really made her scared to leave the house after the diagnosis in fear of what challenges lay ahead beyond her home. Kathy also felt worry of what others would think about how she handled her daughter's diabetes, wondering if they were judging the way she handled her child's behaviour and refusal.

Kathy sees herself primarily as the manager of diabetes in her household, however she states that, 

"I am slowly training her to be my successor. I explain continually why we are doing things a certain way so that she learns as we go." 

But, in the meantime, admits that in managing her daughters' diabetes, Kathy also places a lot of blame on herself on whether or not she did enough to prevent highs, properly carb counted or should have changed insulin ratios sooner.  All thoughts that as a person with diabetes, are very familiar. It was this quote that struck me again,

"Sometimes I feel I give her too much autonomy with her diabetes. I think I just get tired. I work full time, run a household and care for two kids.....sometimes it feels like too much." 

This circled back to that first post I read from Kathy on her social media.  The feeling of blame that presses on the minds of caregivers alike.    Knowing as a person who lives with diabetes myself, that diabetes is unpredictable, and even when we think we understand diabetes, it often can throw obstacles at us.

I urge everyone to reach out to caregivers of children with diabetes and give them praise.  Buy them a coffee, ask if you can help them with anything, or simply listen to them and let them tell their story.   These caregivers are up in the night when most of us are asleep, buying juice-boxes and packing lunches while counting carbs and crossing their fingers that their child will be okay. They deserve some extra love and a big thank you for all the hard work. 


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