Monday, February 9, 2009

The Too Sweet Girl in Ghana

This is the day in the life of a child, our daughter. Alexandra turned 8 years old just a week ago, and has had Type 1 Diabetes for nearly eight months. She is an MDIer, meaning that she takes Multiple Daily Injections of insulin. Because we live in Ghana, an African country located just a few degrees north of the equator, MDI is the crème de la crème of diabetes treatment, allowing more flexibility for her food and meals and hopefully better manageability of her sugar levels. We’re thankful we’ve got that, because the original treatment that Alex was given seems primitive in comparison – twice daily shots with very rigid meal and snack times, and unpredictable lows and highs. We, her parents, hope that one day Alex will have access to an insulin pump, but that will likely be far in her future, maybe even when she becomes an adult. We simply do not have the means to purchase an insulin pump, even if it were available here in this developing country.


Our day begins very early; in the first minutes of a new day. That’s when the alarm clock rings to wake me to check Alexandra’s sugar. Since the very day that she was diagnosed – June 25, 2008 – this has been a daily ritual. I don’t mind, because I know that the consequences of ennui could be dire. We’ve been very fortunate; in the almost eight months since her diagnosis she’s only been low at the midnight readings less than a dozen times. Knock wood. Her lowest low was 2.5 mmol (or 45 mg), though, and that is a very frightening number to see at midnight. Imagine if I had slept through it? I wonder would she have rebounded or seized. It’s a coin toss.

Alex doesn’t even wake during the sugar check; she subconsciously puts her finger out for the prick. During the day, we can do this sugar check in 20 seconds. At midnight, with sleep still clouding my brain and eyes, it takes significantly (at least to me) longer. I don’t turn on the light. Rather, like a burglar riddling through a desk looking for valuables, I clench a small flashlight in my teeth so that I can see what I’m doing. Thankfully, I’ve managed to suppress the gag reflex that I used to have. Don’t tell my husband.

With her midnight reading in hand, one of three things will then happen (and I always hope for #1): 1) I get to go back to sleep, because her blood sugar number was good (enough); 2) Alex has to wake up to gobble down a glucose tab or two, or even drink some juice if the number is too low, or 3) I prepare a correction shot of insulin, which she will (hopefully) sleep through. Regardless of what happens, sleep is never satisfying, for either of us.

On a school day, Alex wakes up by 6:00 a.m. Like any little kid getting ready for school, she’s got a lot to do, and not a lot of time to do it in. Every parent knows the drill; we’ve all got to be drill sergeants in order to get our kids out the door in time. Add in the diabetes duties – check sugar, take insulin to cover breakfast, find and put on her medical ID band (which she refuses to wear 24/7, but at least always wears to school), make sure she’s got her all of her diabetes supplies (glucose strips, meter, cotton, alcohol swabs, pre-filled insulin syringe, etc.) for school – and an hour to get ready is hardly enough. I can’t bear the thought of waking her up earlier; it just too unfair. Alex is still getting ready while her brothers are enjoying their breakfast (even though she wakes up first!). Alex doesn’t really get to “enjoy” breakfast; she eats for sustenance and to cover her insulin. Unfortunately, she’s a slow eater to begin with, so it’s a tedious process, needing lots of verbal encouragement; first simple cajoling and then threatening with bodily harm. She’s got to finish her toast and tea because she needs the carbs.

At school, when she’s out of my sight (but not out of my mind), I can only hope she does the things she’s supposed to do, namely check her sugar before snack and lunch time, and before and after physical education, and take her insulin injection at lunch time.

We don’t have the same support from teachers and school administration here in Ghana as they have in more developed countries. A 504 Program is not in the cards. That’s not to say that no adult is helpful; that’s not the case at all. Evelyn, the school librarian, and Mama Caro, the Special Education teacher, both monitor Alex when she checks her sugar and gives herself an injection on insulin, and they’re very supportive of her. When they learned of a recent incident of teasing when some 5th grade kids called her Diabetes Girl, Mama Caro went to speak to the class.

Most teachers and adults are familiar with diabetes in only a peripheral way, and that acquaintance is usually with Type 2 Diabetes. Ghana has a lot of Type 2 people; obesity is all too common. Adults are ignorant of the special needs of a Type 1 child, and continue to insist that diet and the blessing of the Lord will “cure” her. I dread those days (though they come all too often) when Alex comes home from school to tell me that Auntie So-and-So said that she should pray harder so that God cures her diabetes. The implication being that Alex doesn’t really want to be cured, else she would be. Trust me, her bedtime prayers include this request each and every night.

The bottom line is that Alex is in charge of her diabetes management here, at least while she’s in school, and I cannot count on anyone else to remind her of her responsibilities. Remember, she’s only 8 years old. To date, she’s only forgotten one or two readings. She has matured a lot in only eight months; she knows exactly what she should and should not do based on her sugar reading. I never have to worry that she’ll exacerbate a high by drinking a juice or that she’ll disregard a low and go play with her friends. Heck, we really never have to worry about her ignoring a low – she loves glucose tabs, especially the watermelon flavor. Alex knows what she has to do.

But, once she’s home from school, Alex can get back to the business of being a kid. She is confident that Mom or Dad will pick up the baton. Miss the hand-off? Not on her life; it depends on that. I never forget that.

The remainder of Alex's day flies by in a flurry of homework and play time, interspersed with dinner, sugar checks, insulin injections, fighting with her brothers and bedtime snacks. By 8:30, she’s readying herself for sleep. The very last thing we do is check her sugar.

It would be lovely if she (or I, for that matter), could get an unfettered full night’s worth of sleep, but we have to be content with snatches of 2 or 3 or 4 hours at a time. That, however, is just wishful thinking. Or, shall I say, just a dream. At least, for now.

Saturday, January 24, 2009

The following is adapted from a page of "The Travelling Notebook - A day in the life of a family of a child with Type 1 Diabetes" --- the physical blog being mailed around the world

A 5 year old boy gets up at 7am, sleepy as usual, but in a good mood.
On the weekdays, he goes to school.
He doesn't like to eat too much too early, so usually he drinks only milk at home, and the rest of breakfast he has at school.
School starts around 8am. The boy arrives at school and the first thing he does, is hand the teacher his special bag. He does this before taking his coat off. In the bag there are dextrose tabs, the blood glucose testing meter, alcohol wipes. The rest of the material, reminders of his disease, are in a cupboard in the classroom and the glucagon resting in the refrigerator.

But first, and foremost, he is a kid.

So today he did what he usually does on his way home from school : he teased and pushed his younger brother. He loves to bug his brother.
It gets very rowdy on the way home. Luckily home is not far. We walk. We have to cross a street, and it's usually a fight between the two to see who will press the WALK button first. Usually, I end up pressing it, while the boys push each other and one ends up falling...oh the joy!

Then they HAVE to go up and down some stairs belonging to the local community center. I find it very annoying and have restricted it to only on the way home, and not to school, otherwise we would always be late for school. The kids love it though...running up the ramp, then going around the corner, and reappearing to come down the steps....and back up again, and do the circuit in reverse. I wait to the other parents whose kids have also taken up this type of extra-curricular activity...we wait patiently...not really, but we try.

We have lunch around noon, then the kids play...ahem...I mean, make the biggest mess ever! The 5 year old loves to draw and count, so sometimes he writes down numbers and proceeds to ask me over and over and over (see where this is going) how much this and that number make when added...I hate math...but addition is ok I guess.

Dinner time is around 7pm and bedtime around 8pm. The boys put on their pjs and wash their teeth and off to bed they go. Goodnight kisses and hugs (about a million usually) are exchanged and the door is left a bit ajar, with the hallway light on.

So this is the 5 year old's typical day...except that everyday, in his typical day, his fingers are poked to see what his blood glucose level is... when he wakes up, when he eats, at home, at school, at the store, at parties, when he's sick, when he's acting out of character...a lot of times.

And he wears an insulin pump attached to him 24/7.

You see...this 5 year old has Type 1 Diabetes since the age of 2


above all

he is a kid and enjoys life.