The Tribe Of The Unglamorous Heroes Of The Night
- Written by Michellè Dreeckmeier
Last night I probably saved our daughter’s life.
It was not the first time I had done that.
And neither would it be the last.
Do you want to know what it feels like being dubbed a so-called ‘life saver hero’?
I’ll tell ya. It feels (unglamorously) TIRED.
My ‘heroic act’ – if you want to call it that – comes wrapped in a frenetic package made up of a malfunctioning organ, erratic sleeping patterns, math, carbohydrates, pajamas, insulin, alarm clocks, blood sugars, quiet wee hours of the night, a bad case of bed hair, worry, the promise of a manifesting head-ache the following morning and a young brave person who is inestimably loved.
I am the mother of a daughter who has a chronic, life-threatening, high maintenance, autoimmune disease for which there is no cure…yet. Without any warning our daughter’s body turned on itself and killed off almost all of the insulin producing beta cells in her pancreas. The result: erratic blood sugars which (drama alert) could potentially take her life without much notice. It was two years ago when we received this diagnosis which we wish weren’t: our 11 year old daughter was diagnosed with Type 1 Diabetes. In that single moment our lives changed forever.
Since that day our daughter has been called:
BRAVE.
COURAGEOUS.
A HERO.
A WARRIOR.
I too use these words when referring to my daughter. Because in my eyes she certainly is all of these things – as is every person living with Type 1 Diabetes.
Each day my husband and I act mostly as standbys – we offer our support wherever and whenever she requires or might need it. Our daughter prefers to manage this complicated autoimmune disease mostly on her own. She’s been like this forever. Independant. Self-reliant. Responsible. Conscientious. She is so (wait for it) BRAVE and COURAGEOUS.
At nighttimes, when she sleeps, we take over and monitor her blood sugars and keep her safe. She needs her rest and we are thankful to do this for her. And since a (much desired!) continues glucose monitor is not covered by our health insurance we get to be on ‘night time pancreas duty’ every single night.
My husband and I have been dubbed brave and courageous heroes as well. Yet, owning these words does not seem real and neither do we feel worthy to be even called that. Let me be clear, my picture of a hero most certainly does not match the tired individual with weary eyes who stares back at me in the mirror in the morning after one of those D-nights. None of our family pursue or aspire to the title of courageous, brave hero. We just do what we have to do to keep our daughter safe and alive.
What we do chase after, however,
is LIFE,
and the HOPE for a cure.
D-life is not about titles and labels and feeling brave and courageous and parading around like hailed surviving heroes. There certainly is no time for that! And even though I myself call my daughter a brave and courageous hero I am very aware that she more often than not does not feel like she is any of those things. In the end it comes down to LIFE and living it to the fullest, and enjoying what life offers us in the gift of FAMILY, the gift of TODAY, the gift of NOW.
Like me sitting here, in the NOW, typing these words while drinking a big mug of strong caffeine laden coffee. Because I am a D-mom. Who slept little last night and now own a pounding headache but, thank GOD, did caught an awful episode of hypoglycemia just in time before things got really ugly last night. This cup of coffee may as well be a glass of champagne. Because despite me losing hours of sleep each month thanks to Type 1 Diabetes I am so very thankful that I did caught last night’s unforeseen and unexpected hypo since I almost opted to not check her blood glucose during that specific time slot. I prefer to not ponder any further on the ‘what if I didn’t’ scenarios pertaining last night.
Right now, for a brief moment, I will silently acknowledge the following to myself: Last night I probably saved my daughter’s life. I fought Type 1 Diabetes and I won that round. And because of that my daughter woke up this morning and I am now the proud owner of war scars in the form of exhaustion which will last for the remain of this day. But thanks to the gift of coffee and GOD I will prevail.
During nights like last night I often like to remind myself that I’m not alone. Somewhere in the quiet of the night there are other parents who also fight for their child’s life, sustains them and help keep them alive and safe.
It might be a different disease or a disability or another condition but ultimately we are fighting the same fight.
And to that I raise my big coffee mug and declare:
Here is to us, the tribe of the unglamorous, reluctant heroes of the night who fight battles of life and death in our pajamas.
Michellè
Hi, I read this and loved it….however the one thing I wanted to point out is that a continuous glucose monitor, whilst an amazing tool that we love, is in no way even close to helping you get a full nights sleep as the parent of a diabetic child!
Quite the opposite in fact, I’ve not slept through a full night in nearly 4 years while caring for my little type onesie….she’s had a CGM for the last one and a half of those.
2 nights ago I was up constantly between the hours or 1-4am due to the CGM alarming that she was dropping, then hypo, then still hypo, then rising, then dropping…….you get the picture.
Last night, my little baby cake decided to have a sleep over in her brothers bedroom…..but her transmitter and receiver didn’t want this to happen and kept losing contact with each other, so I was awake between 2-3.30am dealing with “out of range” alarms!!!
CGM’s don’t stop the lows, highs or even hormone dumps that occur to every diabetic child overnight…..they just alarm (like an incessant toddler) to tell you about them every 15 minutes to half an hour!!
Suffice to say that I believe I have less sleep using a CGM with my child, not more.
Couldn’t agree more with the rest of what you wrote though….keep up the good work xx
This really hit home and is so immensely powerful. I am the father of a 13 year old boy who was diagnosed Type 1 just 3 years ago. It is a constant worry but there is no choice other than to just plod on and hope that sometime, soon, a cure or even a better way of managing it is discovered. I feel your pain.