Tomorrow kids all over our small, central-Texas town will be hustling about, gathering their backpacks and lunches, pencils and paper, glue sticks and folders, and other over-priced goods in preparation for the first day of school. They'll rise early in the morning (some earlier and easier than others), dress in their new school clothes, and have a good breakfast to prepare for the day. Soon enough, the newness of it all will wear away, as the joy of the first day of school slowly drifts into routine.
For most kids, school is routine; but for kids with diabetes, it is anything but. For Emma, school will never be routine.
School for the child with diabetes is first and foremost a triumph. Diabetes is a horrrible, horrible disease that, just 80 years ago, was a death sentence for kids. We did not have insulin to inject, and once we did, we didn't have glucometers to test with. As macrabe as it sounds, that a child like Emma, diagnosed at 9 months old, survived to see kindergarten is a triumph of modern man.
School for the child with diabetes usually depends on the school, state, principal, superintendent, nurse, and parent. That's a lot. There are schools that still consider diabetes something that can be controlled by "not eating any sugar." They think diabetic "episodes" can be managed by a single teacher in a room full of children.
Diabetes is not a mini-series.
It cannot be managed in "episodes." That would be rather like handing a knife to a child with hemophelia and teaching the educator how to call 911. Once you have an "episode" the damage can sometimes not be undone.
Believe it or not, there are parents out there that have to fight, and I mean FIGHT, just to get the school to allow their child to test their blood sugar in class. Our school's principal actually suggested that until Emma could walk to the nurse's office alone, they would send another child (another FIVE YEAR OLD) down with her.
Words fail me.
School for the child with diabetes means having to explain, every year, what that thing on your arm is, and not to touch that tube please, and why you can have a juice when no one else can, but you also can't eat the second piece of birthday cake. It means studying for a test isn't enough, you also have to worry what will happen if your blood sugar gets low and you can't think. Or if it gets too high and you have to go to the bathroom RIGHT NOW.
School for the child with diabetes means glucagon, spare pump supplies, insulin stored in the office, syringes, glucose tablets, and Tegaderm.
Will the kids ever get to know me? I mean, I'm gone all the time to see an endocrinologist, a nephrologist, a rheumatologist, and an opthamologist.
School for the child with diabetes means that the first pool party you are invited to will be your worst nightmare. It's hard enough to put on a swimsuit as a teenage girl, harder still when you have a pump and glucose sensor. Will they know why you had to bring some juice with you? Will you have to explain it AGAIN? When you are asked to dance for the first time, will you risk him touching the infusion site on your back that you've spent so many years trying to hide, or will you just say no?
It means wondering if that cute boy will notice you, or the patches of rough skin on your arms scarred by years of infusion sites and glucose sensors. Will he be perfect enough that he will put up with your moodiness AND your pump? What will that other girl, the one without the tubes and the scar tissue, say to him to convince him you're not good enough?
Why can't my big brother be in the same school with me every year? He makes me feel safe.
No doubt there will be many parents with tears in their eyes tomorrow morning. Most of them will be proud and a little nostalgic that their little one has grown to be a kindergartener right before their very eyes. I'll be right there with them, but the feelings will be more complex. Kindergarten will be a trial run, a way to prepare Emma (and her teachers) for all that is to come in the future.
I hope my brave little girl loves it.