Meet Jax once and he’ll remember your name, the names of your children plus any other significant fact that could perhaps come in handy later. He’ll delight you with ridiculous knock-knock jokes, coined on the spot. He’ll probably ask you why the chicken crossed the road. You can be certain that he’ll temporarily blow your eardrums with his joyful noise level.
Last Friday, while at the doctor’s office awaiting instructions, with blood sugar levels at 1000 (100 is normal), my little man was agitated about the blood work. Waving his arms and glaring, he shouted, “What’s wrong with me is all that coughing and yelling at you at night to bring me water!” He did have a point, because we were up every 45 minutes all Thursday night long.
He got the croup Thursday before last. We did the usual. Sit out in the cold night air for an hour until he could breath. Started steroids the next day. Coughed continuously for 5 days. He didn’t seem right, but we were busy with special services at church, I was working and I didn’t stop to take a good look at him until the following Thursday. By Friday, bones were protruding, his eyes sunken with deep, dark circles and he was peeing buckets.
What I didn’t know is that Thursday night, so full of peeing and coughing, would be our last normal night. The last night we won’t worry about his blood sugar going below 70 during the dip that normally happens around 2 am. The last time he would go to bed without an injection of insulin to get him through the night. The last night before my worry level would shoot as high as the 1000 level of his blood sugar.
This extraordinary child has charmed every nurse in the hospital. He uses everything we say against us later. Pulled out two IV’s. Sweet talked a technician into bringing him Jello before his morning snack, which could actually be dangerous. And he will take 4 insulin injections a day for the rest of his life.
If you haven’t been around diabetes – here’s the short version.
Finger poke at 7:20am.
Breakfast (45 carb grams) at 7:30 am.
Insulin injection at 8:00.
Snack (15 carbs) at 10.
Finger Poke at 11:50.
Lunch (45 carbs) at noon.
Insulin injection at 12:30.
Snack (15 carbs) at 3pm.
Finger poke at 5:20.
Dinner (45 carbs) at 5:30.
Insulin injection at 6:00.
Finger poke at 7:30.
Insulin injection at 7:35.
Go to bed and pray his insulin levels will not drop below 70 during the night, because if they dip too low, he could possibly go into a coma.
Then, we’ll wake up and do it again. And again. And again. And again. We don’t vary the times. They are to be followed strictly. Forget one snack and his levels go low. Too low and things get very scary. One innocent cookie slipped in would upset the insulin levels we are working so hard to keep steady.
Type 1 diabetes means his pancreas can no longer make insulin. Insulin is needed to process sugar. Basically, everything we eat is broken down into sugar. Sugar levels too high mean we can no longer process food, even water. This is what caused Jax’s severe dehydration. He was drinking ample water, peeing excessively. But none of the water was going into his cells. His body was simply dumping it out because it could not be processed.
And, so, that special little boy with the huge brown eyes will eventually get used to the injections and finger pokes. We will all spend our spare time checking blood sugar levels and measuring his behavior for signs of low blood sugar. The unsung hero in all of this, big brother Logan, will be the third wheel as we focus on what is best for Jax. What time can we do this or that? When is the next snack? Treat the high blood sugar level. Treat the low blood sugar level. Poke the finger. Inject the insulin.
I grieve. I cry for the normal that we lost. I weep for the little boy who will never again jump on the trampoline, run through the sprinklers or spin for hours on the tire swing without ever thinking about low blood sugar.
Yes, my child will grow up to do anything he wants to do. Miss America 1999 has Type 1 Diabetes. Athletes are Type 1 diabetic. We will adjust to our new normal.
But for today, I miss the old days. I liked things the way they were. They were just fine, thank you very much. And so I cry. I weep. I sob. I lean on God. I pray for a miracle. I hope for a cure.
There is, however, one thing I know for sure: I can trust Jesus with our lives. I can trust Jesus with our lives.