T1P

“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.