This is the story of our American-born daughter, Alexandra, a precocious 10-year old, who was diagnosed in June 2008, at the age of 7, with Type 1 Diabetes. Unremarkable, in and of itself, but we live in Ghana, West Africa. If we thought it was a challenge living in a developing country before diagnosis, believe me, we ain't seen nothing yet.
Tuesday, April 7, 2009
Parents Day at SOS School
But at about 8:15 or so, my phone rings and it’s the school librarian. Thinking it’s a diabetes-related emergency I answer. It’s Alex. She is begging me to come to school and review her work. I’ve got to give it to her for her persistence, so we agree, we’ll be there later.
When I arrive, Alex drags me to her seat and shows me her exam papers. Nothing great about them, let me admit that up front. Alex was always a very good student, with terrific marks. At Soul Clinic she was always within the top 10 in her class. But since the diagnosis last year, her grades have suffered. On the board is a ranking sheet; Alex is 26 out of 27. Awful, and truly truly sad.
Auntie Cornelia comes over once she’s rid of the other parents and the first words out of her mouth are that she gets very angry at Alexandra, because she just knows that she can do better. Bingo! Time for the D discussion!
I explain to Auntie that I agree, Alex can do better, and she has done better in the past. I tell her about Alex being a wonderful student in her old school, always among the top 10. Loves to read, loves math, loves spelling, etc.
Then I tell her about diabetes (again) and how low or high blood sugars can affect Alex’s work and her concentration. I tell her that how in the U.S., children with diabetes are protected at school under a federal (504) law, because they are at a disadvantage due to their medical condition and that, by law, those children are given the opportunity to check their blood glucose before taking a test, and are allowed to adjust their sugar level if its not in range, either with glucose tabs for a low or an insulin injection for a high. I tell her that when Alex's blood glucose is low, she’ll be sleepy, and she might have a headache or a stomach ache, and may not be able to concentrate on the paper in front of her. I tell her that when Alex's sugar is high, she’ll be fidgety, perhaps thirsty or need to pee a lot, that she may have blurry eyesight and not even see the exam paper clearly.
I think a light bulb clicked on. Auntie Cornelia didn’t remember that we had discussed this all already; she also didn’t realize that Alex was only diagnosed last June. But now she sees and I hope she understands. She and I agree that we will work as a team. On the first day of the next term, Auntie will give me a copy of her syllabus, so I know what Alex is working on. When Alexandra is out of school with sickness – and I reinforced to her that Alex can’t be in school when she’s sick because her sugar levels can quickly turn bad – her homework will be made available so that she can see what she is missing. We also agreed that when Alexandra is going to take an exam, she will be permitted to check her sugar level prior to the test. I don’t think Alex will go high at school, given her fixed meals, but a low is a distinct possibility. I also told the teacher to feel free to ask Alex to check her sugar if she feels that Alex just isn’t "right."
Now, I’m not sure all of this is going to help, but I pray it will. Auntie Cornelia told me that she prays for Alex to “get better.” I again had to explain that this disease isn’t going to get better until a cure is found; that Alex will always have diabetes. All she can pray for is that we can manage it in a way that Alex will live a long “healthy” life. That’s my job and it’s more important to me than ensuring that Alex will be in the top 10 in her class. But if that happens as a side effect of better management, I’ll take it.
Oh, and I did manage to find an error in the grading of one of Alex’s test papers, so her score on that test has been revised upwards from a 48 to a 69. Not a vast improvement, but enough to move her up two notches to 24 on the ranking board. By the end of next term, diabetes willing, we’ll have her up in the top half of her class, at least. Wish us luck.
Friday, April 3, 2009
FYI: Saliva has nothing to do with Type 1 Diabetes
It’s been a relatively uneventful couple of weeks. Alex has had fairly stable numbers with her blood sugar readings, we got her A1C report which went up .1 this quarter to 7.4 (not too terrible, but we’re still tweaking with split Lantus and stuff), and we went for her quarterly appointment with the doctor. Kind of boring stuff. Don’t get me wrong – I like boring, especially when it comes to diabetes! I’ll take boring any day of the week over any kind of blood sugar-induced excitement.
The other day, we had something non-boring occur. Sly, the kids and I met with a very nice young woman from
So, after a late start getting to the restaurant (you know “us” Ghanaians, late for everything!), we finally arrived at 11:15 at Chicken Lickin’ in Osu. Jillian arrived a few minutes later (her driver got lost) and after the formalities we sat down to order drinks and food.
First things first; Alex had to check her sugar. Alex displayed all of her diabetes prowess with flawless execution of a sugar check and an insulin injection. A single unit was enough to keep her in range since this restaurant serves Coca Cola Light. A few minutes after the drinks arrived and the food placed before us Jillian whipped out something that brought Alex to a halt: An insulin pen. Yup, Jillian also has Type 1 Diabetes, and has had it for about 5 years. And Alex very rarely gets to see someone with D up close and personal like that. Jillian gave herself her shot in the thigh, and that had Alex propelling herself to my side of the table. “Mom,” she whispered, “she didn’t do an air squirt!” “Why didn’t she?” I suggested Alex ask her, but Alex was still a little too shy into the meeting to do it. But that question niggled Alex for quite a while, apparently, because she eventually did get up the courage to ask. Jillian didn’t realize she was “supposed” to air squirt.
So we all chit-chatted for a little while, feeling each other out, so to speak, and that Jillian got down to the nitty gritty: the interview (which, of course, was the reason she was here after all). Sly signed her release form, Jillian clicked on her recorder and we started. Oh, we had a lot to say and I won’t go into it in detail here (I know, you’re thinking, “thank God!”). I’ve really said it all before.
But after a while it was time to interview Alex, who was very excited with the prospect of signing her (own) release form, and talking (directly) into the recorder. There were lots of standard questions, and some standard responses. Alex was right when she answered that Type 1 Diabetes is a disease that you get and you didn’t do anything to get it, and that it’s different from Type 2 diabetes where you get it because you eat too much or don’t exercise. I have to admit, I was really proud of all of her responses. Except for this response, which is pretty close to verbatim: “Some people might get Type 1 Diabetes because someone who already has Type 1 Diabetes spit in their mouth.” I have no idea where she got that from – maybe some misperceived HIV/AIDS information from school?!
Then Jillian allowed Alex to interview her and offered her the questionnaire that she worked from. Alex kept to the format, but informed Jillian she was going to mix the questions around. Then Alex added a few of her own questions, apparently. The one that pops out in my mind is “How many boyfriends did you have?” Alex, I imagine, will be working as a gossip columnist when she gets older.
The interview ended and Jillian went on her way, but not before a quick hug and a gift to Alex of a heart-shaped key chain from