What Every Parent of a Child With Diabetes Wants You to Know

Wednesday, November 1, 2017
I write a lot on this blog, I mean a lot.  In all that writing I really work hard at keeping things positive, Lord knows there's enough negativity in the world, why add any here?  No one wants to read more of that.  I am honest though.  I've written some pretty personal stuff in my Food For Thought posts. Most of my friends and some of my blog readers already know that our oldest daughter, Katie, was diagnosed with Type 1 diabetes when she was just 10 months old.  It's not something we hide, but it's also not typically something we discuss regularly outside of our immediate family...for several reasons.  Today I came across a post on Facebook that touched my heart, made me cry, and took me back.  It took me back to some trying times, times that tested our resolve and made us who we are today.  I don't think if I had written this poem myself, I could have described those days better.    The title of the poem is Nobody Saw You.   It's about life with a toddler with diabetes, the life nobody sees.  Thank you Stephanie for letting me share your words.

Nobody saw you..
-- by Stephanie Prince Alexander

Nobody saw you at 3 am, headlamp on, sneaking into her room
Every. Single. Night.
Praying she doesn’t wake as you bleed her finger for the 10th time today
68. Shit.
Too low for 3 a.m.
Get the juice box

Nobody saw you
Holding your screaming baby down to give them their 5th shot of the day, or change their pump site for the 3rd time this week
“She needs this to survive,” you repeat to yourself
“Will she be able to handle this life?”
“Will I?”

Nobody saw you cry
Because you always had to be so strong
You can’t let her see your broken heart
You must keep going
She has to be so brave, you must set the example
Soldier on

Nobody saw you desperately shoving sugar in your shaking and confused child
“One more sip, baby”
“One more marshmallow for momma, please”
Staring a hole through the Dexcom
Waiting for the arrows to stop going down
Waiting for the alarm to shut up

Nobody saw you
Trying to count how many carbs she ate
Tiny teeth marks on an apple – is that 5 carbs worth or 8?
Did she eat three french fries, or was it six?
Not enough insulin, she goes high and there’s long-term damage to her little organs
Too much insulin and we’re looking at an immediate and dangerous issue

Nobody saw you on the phone
With your insurance company
With your diabetes supply company
With Dexcom support
With pump customer support
Your endocrinologist
Your nurse
10 phone calls this week when you were supposed to be working
Or napping
Or eating

Nobody saw you, nobody listened when you tried to educate them
To tell them about a condition so complex that they can never truly understand unless they live with it
It’s an autoimmune disease
No, it can’t be prevented
No, there is no cure
Yes, she can eat that
Nobody saw you

So scared to sleep through an alarm and she might not wake up in the morning
Waking up to feel like you can not do this another day
But you rise to take on another 24 hours – for them
Check the blood sugar, treat the high, count the carbs, treat the low

Nobody saw any of that
They simply saw you at the park, the museum, grocery shopping, at the beach
I see you, brave ones
I see your grit and your daily grind
I see your fears for the future
I see your fierce love and determination for your child

I see you raising a warrior, and in the process becoming one yourself

I remember the day Katie was diagnosed like it was yesterday.  Some things in life are like that.  The days and years that followed her diagnosis are clear and blurry all at the same time.  Our journey was a little different than the one described in the poem.  The pump wasn't the 'thing' yet.  When we came home from three weeks at the hospital following Katie's diagnosis, we were squeezing pee out of diapers to test the amount of sugar in Katie's urine.  If you've never tried to wring pee out of a Pamper...try sometime....it's like getting blood out of a rock.  That test didn't even tell us what Katie's blood sugar was, it only told us if it had been excessively high which would result in spilling of excess sugar into her urine. Then the glucose testing machines came out.  Our first one was huge and had to be plugged in on the kitchen counter - handy when we were home, but not much help if we weren't.  It took two whole minutes to get a result, two minutes that seemed like two days when you had a shaking, convulsing, crying child.  Yes, we knew she was low, but how low would determined whether we needed juice or a glucagon injection.  When I see Katie's monitor giving a reading in 5 seconds now, I curse we didn't have that 36 years ago.
Without an insulin pump, we were left with shots.  Katie needed two a day most days.  Some days required more if she were running high for some reason - a reason we may never understand because diabetes is like that, without reason, without warning, without logic sometimes.  So we would give our toddler her mealtime shot and hand her a plate of food.  If you've had a toddler, you know that it's a hit-or-miss situation when it comes to mealtimes.  With a healthy toddler, who cares if they finish their meal?  They can just eat later or wait till the next meal or snack.  But our toddler just had a shot of insulin, insulin that would bring down the blood sugar - with or without incoming food.  Even though we were soon forced to do a shot after a meal instead, mealtimes were a challenge for us and our fussy toddler.

Illnesses in babies and toddlers are trying and difficult already, but take a child with diabetes and add a mountain of stress and complications to the mix.  All of our training at Joslin Diabetes Clinic in Boston taught us that illness would cause high blood sugars but we would quickly learn that our child would not go high with illness.  No, our child would go low when she was sick.  Now we are dealing with puking, or high fevers, chicken pox, or strep throat and dealing with low blood sugars and maybe seizures.  Try force feeding a sick kid when they are throwing up or have strep throat.  The memory of spoon feeding maple syrup to my baby girl with a sugar of 40 or 50 (a normal blood sugar is 70-100), too lethargic and cranky to cooperate, too low to understand the urgency.  Then there were the nights she woke up screaming in a night terror thanks to a low blood sugar, waking us from dead sleep to automatic pilot to jump into action with the test kit and rescue snack.  Kids who don't have diabetes get sick, but don't end up in the ER.

Of course there's the food restrictions....'No Gram, she can't have another cookie', stuff other kids never have to deal with.  There are other things too....sitting in an auditorium waiting for your kid's turn to dance in recital hoping the snack you gave her kept her sugar up so she doesn't have a low on stage,  the same worries at DARE graduation, h.s. graduation, college graduation, her wedding, etc..etc.  again stuff parents of kids without diabetes never have to think about.  Kids without diabetes can run and play all day and not have to worry about the exercise catching up with them 12 or so hours after that exercise and cause a bad low during sleep or during some other unwelcome, unexpected time.   Then there comes the time they begin driving and you preach and pray that they'll test every time they get behind the wheel ... again something other parents don't have to think about.  No less worry or concern come along with your daughter's process to start a family, because having children for women with diabetes IS a process and a challenge.  All of these things parents mostly deal with alone, just them, because grandparents and relatives are too scared to deal with with it because they have never had to live with diabetes day-to-day, minute-to-minute.  No....that responsibility, that challenge is reserved for parents....and school nurses.  We were lucky...ours was an angel from heaven.

I could go on and on but it was our burden, no one else's.  Do I get angry about all of this?  No, never angry.  Frustrated perhaps, weary sometimes, but never angry.  We accepted diabetes the moment we were told the news 36 years ago and we resolved to treat Katie like a normal kid as best we could under the circumstances we were handed.  Did we succeed, some days maybe but certainly not all.  Even a small child knows it's not normal to have your finger pricked 6 times a day and get 2 shots a day.  Normal kids don't have lows and normal kids don't have to trade their Halloween candy for non-edible gifts.  Normal kids get to go on sleep overs - not just because they're allowed, but because people aren't too afraid to have them sleep over; they don't have to pack snacks and test kits for field trips.  Normal kids don't prick their own fingers at age 3 and normal kids don't do their own insulin injections at 6, hoping then they'd get to go on sleep-overs.  Normal kids don't have to eat when they're puking because their blood sugar is on the brink of requiring a trip to the ER.  When you have a kid with diabetes, normal is all of this stuff, everyday, for the rest of your life.  Normal is wishing you didn't have to explain yourself to your classmates.  Normal for a kid with diabetes is a different normal than it is for the rest of the kids you know.

What I wish most is that people could have understood, even today.  People don't get it, just like people with chronic pain, or cancer probably wish they were understood.  Until you walk in someone's shoes......they say.   We get tired of the comparisons...."well so and so doesn't get low that often.  Or so and so didn't have any problems with pregnancy.  Or so and so has never had a high A1C.... "Katie looks so healthy", they say.  People look at diabetes and don't see anything.  They look at their Type 2 relative and see nothing because Type 2 people don't always behave as if they have diabetes, test like they have it or eat like they have it. Their lives and their symptoms are not like Type 1's.  So unless you're a parent or a sibling of a child with diabetes, you have no idea.  Nobody sees you when you're in the trenches of caring for a child with diabetes.  Colds and viruses, teething and stomach bugs are awful for everyone, especially little ones, but they are temporary.  Diabetes is not temporary.  The fears, the struggles, the restrictions, the discipline, the juggling, the worry, the testing, the wear and tear on the body....these are forever.  If you're lucky enough to have a healthy child or grandchild, be grateful and if you know someone with a child with diabetes, be mindful and be understanding. Most of us fight this fight in silence.  We don't complain and we don't expect you to fix it, but a little love and support goes a long way.

Diabetes is an epidemic today. More and more young children are being diagnosed than ever before. We are not one of the few anymore, we are one of the many.  No doubt if you don't already know someone with a child with diabetes, you'll know one soon.  To add a little something for you to understand how big diabetes is:

  • 1.25 million Americans are living with diabetes
  • 200,000 of them are youth under 20
  • 40,000 people in America are diagnosed with diabetes each year
  • between 2001-2009 there was a 21% increase in the prevalence of Type 1 of people under 20
  • Less than 1/3 of Type 1's consistently achieve target blood glucose levels
  • 1 out 11 of Americans have diabetes
  • 12.5% of the population in New York State has diabetes
  • 32% of the adult population of NY has diabetes
  • Diabetes costs an estimated $21.6 a year in New York State alone
Thanks to JDRF and ADA for those statistics.

Diabetes is not a closet disease but considering how little most of the non-diabetic population understand about it, you'd think it was.  Post Script:  I should add here that Katie is now an RN, healthy, happily married and just had her first baby after a successful and relatively problem free pregnancy.....because she kept her A1C at 6 or below the entire pregnancy.  Life does go on with diabetes but it is not without consequence, trying times and change.
The following post written by the mom of a toddler is a perfect reminder of the helpful and not-so helpful things to say to someone who's child is diagnosed with diabetes: Say Something or Don't, What to Say to Someone Who's Been Dealt a Blow.  Please read it if you know someone with diabetes.
Thanks for reading today.  I didn't mean to get on my soapbox but this poem really struck a nerve and brought back some difficult memories.  I promise to get back to the good stuff next post, so don't forget to come back to Life As I See It.
For more information about diabetes and for support if you or a child you know has diabetes:
Katie about a month after her diagnosis.....it's no wonder people don't understand diabetes.

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