Yesterday I got an email from D, the mother of one of Leo’s new school friends . It touched on three important school age topics:  an upcoming birthday party, scheduling a playdate, and choice of summer day camp.  After a short dialogue, D replied “Wow, I am beginning to see how every decision you make is influenced by his medical condition.” I wanted to reach through cyberspace and hug her. I was just so happy she understood.

A few years ago I had shared my fears with my good friend T. I have always been a friendly “people” person. But after two of my kids were diagnosed with diabetes, I felt strange meeting new people. I even felt strange seeing old friends or acquaintances. It was just too difficult to be around people who didn’t understand our life. It is a completely different reality than a family life without Type 1 diabetes, not to mention celiac disease and food allergies…

I didn’t want to alienate people and I didn’t want their pity. I just wanted them to get it. If you spent an hour or two with my family or met me for lunch, you would see how the diabetes weighs in on everything. At home it’s : You’re hungry again? When is the last time you tested your blood sugar?  Is tonight site change night? MOM, I need more strips! “ Meeting for lunch or coffee, it’s a call from the school nurse, “His blood sugar is 250 and it’s time for their snack but he still has insulin on board from breakfast, what should we do?”  Or it’s Sam calling from middle school, “Mom, I’m over 300 and I really don’t feel well but I don’t want to stay at the nurse and I’m so hungry…

Five years into this complicated life, I have accepted the reality. I have gotten fairly good at multi-tasking, but that can be dangerous. For example, I really can’t speak on the phone or in person to anyone while I am giving the kids insulin through their pump. If I make a mistake, the consequences could be HUGE! I call this “distracted bolusing.”  As you can see from my daily snapshot below, regardless of where I am, I need to take calls from the nurse, probably appearing rude.

6:45am – Wake up, test kids’ BG (blood glucose) without waking them. Depending on their numbers either give them insulin OR juice OR if they are ok, go downstairs and weigh out their breakfast cereal and milk.

7am – Get kids up and dressed, feed them and finish making lunches (you may ask, why not make them the night before?  GF (gluten-free) bread is unpalatable unless it’s fresh , so making it the night before just doesn’t work). Fill out daily BG log with correct carb counts for the day’s lunch and snack and put in folder for nurse,

7:45am – Before leaving for school, make sure kids have their test kits with adequate test trips and tablets for possible lows.

8:00-3:30- YES! Time for coffee, daily errands which include food shopping-4  different stores to cover produce and GF stuff and home cooking/baking. Phone calls to insurance companies to make sure we have enough insulin, pump, and meter supplies. Volunteering for JDRF, school, and blogging as time permits.

Field calls from nurses every 2 hours for Ari and from Sam , whenever he needs me.

Easiest time of day, unless I need to :

-pick up Leo because his BG’s remain high throughout the day and he needs a site change

– OR they somehow forgot their lunch that I already put in their bag (how does that happen, I always      wonder) and since there is no GF hot lunch offered in school, I need to bring lunch to school

-OR they somehow forgot their test kit in THE CAR (again, how does it mysteriously jump out of their bag in the first place?  Perhaps they were checking for homework en route to school?) Sam did this on the morning my niece was born. I was so angry. He has a spare kit in school, but that one was out of strips)

3:45pm – Kids home, test and give insulin for snack, start homework, dinner. For any after school activities, be sure they have a GF snack, carefully pre-weighed and remember to bring test kit

7-8:30pm – Shower, dessert (differs depending on their post-dinner BGs ), insulin pump site change every 2-3 nights (big needle, painful , moans and groans), bedtime.

10:30pm, 12:30 pm, 3:00 am   Check BG’s and give insulin or juice, honey or nothing depending on number.

6:45am Start over

Above is a good day, but our mantra is “expect the unexpected”.  Weekends and holidays can be brutal as most family and child-related activities are food -focused. We could stay in a bubble and constantly stick to a routine, but our kids have reached ages where we want to step out of the bubble and have new experiences.

It’s all doable. Don’t get me wrong. It’s gotten a lot easier over the years, especially now that Leo is in school all day. Diabetes has brought our worries and stresses of child rearing to whole new level. But here’s  the thing…I am inspired by how well my children handle their challenges every day, even in the middle of the night when they need to wake up briefly to correct a low BG by drinking juice.  Diabetes may be a burden for me, but at the end of the day it’s their burden.  The joy I feel when I watch them laugh hysterically with their friends, and the pride I feel when they achieve their milestones…well,  that‘s reached a whole new level as well.