Our New Normal

12/5/19
WRITTEN BY: Joanne Berkey
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A full-time job

I am a high school counselor. Over the past 18 months, since my 7 and ½ -year-old was diagnosed with Type 1 diabetes, I have been late, left early or missed work altogether far too many times.

I am very grateful to work at a place that is completely understanding of my need to be flexible with my work schedule in order to properly care for my son. I was driving into work today (on time!) and thought: “Wow, I don’t think I’ve been late this school year yet because of any T1D complications.

Once the thought had passed, I immediately prayed to the diabetes gods and begged for their forgiveness: “Wait, sorry, NO, I didn’t just think that! I’m not cocky, I’m sorry, please don’t punish us.”

As a parent, you just know that as soon as you get things steady with your T1D kiddo, the you-know-what will hit the fan. And these complications are no longer new to us.

Becoming a reality

When my son was diagnosed with Type 1 diabetes at age 6 in March of 2018, nearly everyone we encountered during our hospital stay kept trying to tell us about a “new normal.”  I absolutely hated hearing that phrase. But – as much as it pains me to admit it – 18 months later, it became true.

Four weeks after my son’s diagnosis, a middle-of-the-night low meant that I got zero sleep. I was so terrified that he’d go low again that I would just stay awake staring at his Dexcom and testing his BG via finger sticks to make sure his Dexcom was accurate. I wanted to make sure that he was safe. I would usually call out sick from work the next day out of pure exhaustion.

Staying awake for most of the night in general is simply tiring. Staying awake for most of the night while you’re terrified that your baby might die, is exhausting.  These days, a middle-of-the-night low might steal 10 or 15 minutes of sleep from me because it’s our — I can’t believe I’m going to say this – “new normal.”

Easier with time

I can remember everyone in the family staying home from school and work the first time that his Dexcom sensor failed and we needed to insert a new one before he left for school. Inserting a new Dexcom sensor back then was extremely upsetting for him and could take up to an hour. Back then, my husband and I were too nervous to send him to school during the 2-hour warm-up session that by the time it was over, it was nearly 12 pm.  After our morning ordeal, we would all be wiped out and take the day off.

Just the other day, his sensor failed at 4 am. We woke him up about an hour earlier than normal to insert the new sensor and then I left for work. Did you catch that? I left for work because (ugh) here it comes again, it’s our new normal. His dad called about an hour later to tell me that the new sensor had also failed right as he was dropping our son off at school on time. 18 months ago, this would have sent me into a tail spin and racing out of work. But not this time. My husband went home, got another sensor, went back to his school and inserted it. We asked the school nurse to give him one finger stick during the 2-hour warm-up, and we all just went on with our days.

New. Normal.

So, if someone in your family is newly diagnosed and everyone and their mother keeps telling you about this new normal, just take a big ‘ole deep breath and hang on. It’s impossible for you to truly be able to appreciate this yet because everything is so tough and scary in the beginning. But know this: you are doing an amazing job and you WILL get through this.

Soon enough, you’ll find your new normal.

 


Check out another parenting story about Type 1 challenges When Burnout + Exhaustion is All You Can Muster.


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Joanne Berkey

Joanne lives with her husband and 7-year-old T1D warrior, C.J, in Parkville, MD. C.J. was diagnosed on March 26, 2018. Joanne is a school counselor at an all-boys private Catholic high school in Baltimore, MD. Her family loves the Baltimore Ravens and, of course, #89 Mark Andrews is their favorite!