“How many
times were you up last night?
“4”
“Yeah… me
too… no... wait…. 5… I forgot that 4:30 check… to make sure her high came
down.”
“Have you
ever treated with quick sticks?”
“Grape juice
works better than orange?
“I pack carb
counts on post it notes in my son’s lunchbox”
“Powerade
Zero… lots and lots of Powerade Zero.”
“How do you
get your kid to hold still for CGM insertions?”
“Give me
your list of top 10 low carb snacks”
If you’re a
parent of a T1 kid and you meet other parents of T1 kids… the above is typically
types of conversations that are shared. It’s fairly fascinating (or maybe it’s
just the inner sociologist in me that finds it fascinating) that over the
course of 9 months I have connected with so many T1 parents and each and every
time the “meeting” follows a similar pattern.
There’s a
ritual that occurs upon encountering (whether virtually or in person) other T1
parents. First, comes a huge sigh of relief, a “wow… someone else like me.” Suddenly things
like socio-economic status, race, gender, geography and political affiliations
(if only for a short- temporary time) no longer matter. Whatever differences might
set your family apart – might limit your encounter in any other situation are
gone- you have one shared common identity… you are members of a community… the
diabetic community.
Once contact
is made with other T1 parents the questions/stories start.
“Pump or
injections?”
“Humalog or
Novolog?”
“Diagnosis
Date/Diagnosis story
“Medtronic
CGM or Dexcom?”
“How long
have you been off work to care for your kid?”
“How do you
handle school?”
“What’s in
your 504?”
“A1C
comparisons”
And then.… there’s
always the scary story, either one from personal experience or one they’ve
heard about (seizures, DKA, amputations).
Next the conversations
take a turn towards tips/advice/suggestions… The “have you tried…” “Use this
app.” “Check this site.”
As the shared
commiserating comes to an end and the verbal exchange reaches closure and
interesting thing happens. In my short 9
month experience thus far this has proven to be the case each and every time.
Inevitably
someone ends the discussion with
“Diabetes
sucks”
“No one
understands… I didn’t understand…..”
“I never
knew it would be this bad…”
Which is followed by…
“It gets
easier… it’s still difficult…. but it gets easier”
And after this one of us will say….
“Caring for
a chronically ill child is hard, so emotionally and mentally exhausting…. But
Thank God my child has Diabetes and not something far worse.”
Or
“It was so
difficult to listen to the Doctor diagnosis our kid with a lifelong chronic
illness… but could you imagine if it had been cancer?”
Some day’s
diabetes takes over our family… but some days it doesn’t. Some nights I get 4
hours of sleep…but some nights I get a little more. I thank God every single
day for what I have. I thank God every single day that with modern medicine, technology
and education Jeff and I are capable of learning how to care for, manage and
treat an unpredictable –crazy- chronic illness in a typical- unpredictable-
crazy 2 year old toddler. I thank God that I get to stick him, and poke him
multiple times a day to keep him alive and well. There are so many other
mothers and fathers who would trade places with me in a heartbeat…. who would
give anything to only have to wake up 4-5 times at night, who would love to
know that by sticking their child 15 times a day with a needle it would save
their life… parents who can’t say “my son will have a relatively healthy-
normal childhood.”
While I
sometimes seek solace in cries of frustration and anger- I remind myself of
others… my heart aches for mothers grieving as they watch their toddlers die of
life threatening diseases. T1 parents keep it all in perspective. I keep it all
in perspective. We should all just try to keep things in perspective.
