Can you imagine
.... what it would be like to wake up every morning and the first thing you do- the very first thing- is to poke yourself in the finger to get a tiny sample of your own blood?
...having to leave math class mid- lesson, a friend's house in the middle of the play date, or worse, a hockey game right before your shift because your blood sugar is too high or too low?
... being late for a big event because your blood sugar was too low and you couldn't drive your car until it got back to normal?
...having to tell a little machine every time a carbohydrate crosses your lips so that little machine knows how much insulin to spit out to keep your blood sugar at a normal level?
...waking up in the middle of the night feeling funny because your earlier activity sent you to bed with a sky high blood sugar only to crash 3 hours later?
...changing your pancreas every three days?
My kids don't have to imagine, it's their life. As the mom of the kids dealing with these realities, I can tell you some days are just hard. Not only do they deal with typical kid/teenager things but they deal with Diabetes. With Diabetes comes responsibility, frustration, resilience, strength, courage but never, ever peace. It's a never ending battle to find a balance. The balance of insulin, the balance of friends who support you, the right amount of physical activity, the right amount of sleep. The tiniest thing can tip your precariously balanced teeter totter and throw you onto the merry-go round. As the mom, I get frustrated explaining to people that my children are not like everyone else. They may look like it and act like it, but inside their bodies, they have a renegade organ that puts their life in daily turmoil. I get angry at the coach who's expectations don't work in favor of our balance. I get annoyed at the assumption that this is something they can out grow or choose to have. I get anxious at the slightest sniffle because I have seen how sickness can make blood sugars go crazy and put them in a hospital. There are days that the pressure of being their mom makes me want to scream! Keeping them healthy is a full time job, a job that as parents we need to teach them to do well so they can continue to be the thriving, healthy young people everyone sees. But, then as parents we have our own balance to find because we can't keep them healthy if we aren't healthy ourselves. We have other children to raise and we need to make them feel the same love and support. I'll admit, too often that third girl of mine gets lost in our Diabetes shuffle and that makes me sad.
In an attempt to find a balance, humor seems to be my go to strategy, both at work and at home. As a result, I found myself chuckling to myself the other morning as a series of phrases were heard around our house. Phrases that without Diabetes I would have been a bit confused about-translation in parathesis.
Did you check? (Blood sugar)
Did you put in? (carbohydrate count/insulin)
What is your BS? (blood sugar though often feels like bull shit)
Did you poke? (fingerpoke using a lancet to get blood for a reading)
Are you high? (referring to blood sugar not drugs)
Mine is 104 so my BS is better than hers! (blood sugar reference made by small competitive boy)
and my personal favorite- "How's this butt cheek?" (looking for site on body for set change)
While funny in a stand alone setting, taken as a group and translated, it is another picture of living life with Diabetes. It is a full time job that nobody understands unless they deal with it themselves.
Last November, the kids decided to apply for the JDRF Children's Congress. It happens every two years. 150 children go to Washington and meet with legislators to tell their stories and paint a picture for those who don't live with it daily. To give a face to the disease and stress the importance of continued funding for research for a CURE, not just a treatment. As an applicant, they were to write a letter telling their story. I have no idea what the girls' letters said, as they didn't want me to read them. However, TJ and I wrote his together. On Tuesday, they got confirmation in the mail that of over 1500 applicants, they were chosen. In July, we will be heading to DC. When I was 8, the hardest thing I had to do each day was catch the bus to go to school. I had never even heard words like insulin, carbohydrate or Diabetes. When I was 15, I am pretty sure my hair and getting my bangs "just right" was my biggest concern, not where I could wear my pump with the least amount of difficulty (and visibility). At age 17, I just wanted to go to college and see the world. A good doctor and pharmacy in my college town was not even a blipp on the radar in my mind. I would like to imagine for them a world like the one I remember- a world where "pancreas" was science vocabulary not a job description! I am so proud of them for being willing to put themselves out there- to spread the word about living with something few people understand and many can't even imagine.