One Day with Diabetes (2002)

a Journal by Alicia (with commentary in italics by Rick)

Our day often begins early…

4:14 A.M. Miles wakes us with a cry that immediately tells us he is low. We find him clammy and moist, shaking and crying. After a check we discover his blood glucose is 35. I give him a juice box while Rick goes downstairs to get a snack. I hand feed him cheerios because his hand is shaking too much to hold them. Rick turns on his favorite lullaby tape and I rock him for a few minutes. Back to bed.

8:00 A.M. Miles wakes up in a good mood. He comes in to cuddle, which tells me his glucose number is good. He would not be so happy if it were not. I check his number - it’s 97 - and have breakfast. I measure his cereal and milk. After he finishes I dose him with insulin for the amount of carbohydrates he ate. Miles wants to watch "Dragon Tales" on PBS.

10:00 A.M. It is time for a glucose check. His breakfast insulin has "peaked" (run its course) and I need to see if the dose for breakfast was accurate. He has been running around a lot this morning so he could be going low. His number is 70. That is not too low, but it needs to be igher. Our target is 150, but between 80 and 180 is good. I measure out a 15-gram snack for him and we get ready to do errands.

Because Type 1 Diabetes is often called "Juvenile" Diabetes, people sometimes assume Miles will grow out of it. He won’t. The truth is "Juvenile" refers to the patient’s typical age at diagnosis. Type 1 Diabetes is a chronic disease. At present there is no cure. The Juvenile Diabetes Research Foundation is working to change that. And we’re working with them - volunteering in a number of ways, and participating in the Walk to Cure Diabetes as a way of raising awareness and funds for research towards a cure.

10:30 A.M. I pack a sandwich for Miles (11 grams of carbohydrate in each slice of bread; two tablespoons of peanut butter and one teaspoon of honey. I pack his "kit" (we never go anywhere without it) with his glucometer and testing strips, the sandwich, a sugarfree drink and another juice box. We are ready to go. We always have other items in his kit: A glucogon shot if he passes out, glucose tablets or a tube of cake icing for lows. A low carb snack if he is high (having a high number makes one very hungry), and a couple booklets that give the carbohydrate count of many different foods in case we eat out. Miles is hungry again, so I measure another 15-gram snack and we leave. The effects of exercise (burning calories and lowering blood sugar) can often last for 1-12 hours. Miles has not exercised strenuously, but he has run around a lot, so I do not give him insulin for this snack. I don’t want him to go low. Low glucose numbers can kill brain cells in young children.

Someone asked me "What good does walking do?", and it’s a fair question. The Walk to Cure Diabetes provides our family (and others) with an "organizing event" to help raise funds toward a worthwhile cause. It provides caring people with a motivation to make a gift, no matter what size. It provides encouragement in unbelievable ways: first, the encouragement of each of those notes we receive with an enclosed check made out to JDRF; second, the sight of tens of thousands of people walking because they want to help find a cure for the illness that has invaded my son’s life. As I see them I am moved to tears. Their presence says to me "You are not alone".

12:00 P.M. We have been running errands and now it is lunchtime. I check Miles and he is 300. That is too high. I must have guessed wrong by not dosing him for that last snack. So much of the day is a guessing game. He is getting cranky (a result of a high blood sugar and the fact that it is time to eat) so I give him the sandwich I made earlier. I give him insulin to bring his blood sugar down and help him feel better, then dose him for the sandwich. I do all this in the cereal aisle of the grocery store.

3:00 P.M. Time for a check and snack. His number is 110, which is great. I don’t give him the full dose of insulin for his snack because he is under his target number. If I gave him his regular dose for a 20-gram snack it might keep him at 110, but would probably make him go lower. Each 15 grams of carbohydrates raises Miles’ blood sugar 75 points, so I start doing the math required to get his as close to 150 as possible.

As we are thankful for all of our wonderful friends, we also thank God for the friends we have made in the Kingwood Juvenile Diabetes Support Group. Think about this: it’s almost impossible to find a babysitter for an afternoon, or so that Alicia and I can get away for an evening. Most teenaged babysitters don’t have the maturity to handle blood checks and insulin dosing, and any thinking adult would rightly be intimidated at the thought of what could happen in the event of a serious blood sugar low caused by an inaccurate insulin dosing. Our Support Group consists of other parents of diabetic kids who understand the task. Many of them (and some of their kids) have cared for Miles and ElenaClaire, and we are glad that we’ve been able to provide the same kind of care for their diabetic kids.

5:00 P.M. Dinner time check. I actually got his snack dose right! Yea! I start getting the final touches on dinner. We try to get Miles’ dinner insulin dose before or by 6:00 P.M. This gives the insulin time to "peak" and start it’s way out of his system before we put him to bed. We don’t want his insulin to peak while he is sleeping. I measure his food (1/3 cup of peas, 17 grapes, ½ cup of pasta, 2 tablespoons of ketchup…. he dips everything in ketchup!). He eats, and then I measure what is left to arrive at his dose. Rick turns on the sprinkler for a fun playtime outside.

7:30 P.M. Hopefully this is the last finger stick of the day. Rick checks Miles and calls out,"135!" This, again, is a great number, but not high enough to keep him stable all night. Because Miles has been running around in the sprinkler we know that he will need a larger than normal snack as the exercise keeps affecting him. We suggest several snack ideas. Miles is not hungry. We know that if we put him to bed with no snack, he will go low. This is not good for him or our night of sleep. Finally, ElenaClaire volunteers to do a puppet show if Miles will eat. He thinks that sounds fun, so he eats his cereal and milk and the puppets occasionally remind him to take a bite. 30 grams later Rick heads upstairs to read stories and tuck Miles in. We pray for a restful night of sleep and for stable numbers.

This is a pretty ordinary day. Sometimes it is harder, sometimes easier. I often feel like my brain is tired. I constantly have to think about what will come next and how Miles’ activities now will affect that next step, and how that will impact his morning, afternoon, evening and overnight. I am glad Miles is my son. I love taking care of him . I do not wish this were anyone else’s responsibility. I am glad that we have fantastic medical partners like Dr. Brosnan to help us navigate through the maze called diabetes. But we pray for that day when we can send you a letter telling you we will not be raising anymore money for JDRF because diabetes has been cured!

There are few sentences I would take greater joy in saying than the sentence "My son used to have diabetes". But I believe I will say it someday. The research currently being done is very exciting and groundbreaking, and many people who know (our pediatric endocrinologist for one) have suggested that by the time he graduates from High School, Type 1 Diabetes will bepart of Miles’ past, not a daily reality of his present.I haven’t written this to gain your sympathy; only to help you understand what it is like to live with diabetes, and to invite you to join with our family and millions of other families as we pray and raise money for that cure.