My daughter was diagnosed with Type 1 diabetes at the age of five nearly three years ago. Needless to say, this event upended our lives. We suddenly had to perform round-the-clock rituals just to keep her alive. We lived with constant fear of hypoglycemia, and we could not escape the reality that one small misstep could lead to seizure, coma, or even death. (Never mind the more remote threat of long-term complications.) These psychological and emotional burdens were compounded by financial ones. We quickly realized that diabetes is expensive—very expensive.
Diabetes’ tentacles reached far and wide, impacting my and my spouse’s professional lives, as well as our mental and physical wellbeing. It wasn’t long before we each developed our own stress-related health problems. As I’ve written elsewhere, I believe that these were psychosomatic. Sigmund Freud was right to call the body a pedantic symbolist. When one feels helpless, one can become helpless.
Over the years, we’ve found ways to take better care of ourselves while also taking care of our daughter—and our son, who does not have T1D and who too often feels like an afterthought. Of course, each day is still a struggle. We all move mountains every day just to manage diabetes. (And I use the word “manage” loosely.) But there are opportunities to take some of the sting out of diabetes. Here are a few of the routines that have most improved our lives:
1. Giving Our Child Options
Our daughter has T1D; hence, she is going to have moments of feeling deprived. There are inevitably times when we have to limit or deny treats when everyone else is eating to their heart’s content. For instance, if her blood sugar is over 400, dessert is out of the question—even if it is Christmas Eve. Because of this reality, we try to give her choices when and where we can. Sometimes, when preparing dinner, we let her select the protein, vegetable, and carbohydrate for the meal. We also include her in grocery shopping. Such small gestures give her a sense of control (however small) over her food intake.
2. Scheduling Time for Our Other Child
As already mentioned, our non-diabetic child is too often in the background. We are so focused on the day-to-day tasks of managing our daughter’s diabetes that it’s hard to keep him in mind, and this leads to further tension. Here’s a sample scenario: my son is trying to show me something he made at school, but the CGM is alarming. So, I acknowledge him with a reply that really means “go away” so I can attend to the more important task—treating the high or low. Then, he misbehaves either to get attention or to express his frustration. Being conscious of the problem helps. So does carving out time for him specifically. If our daughter is at a friend’s house or a doctor’s appointment, then one of us will plan to do something extra special with our son. We look for opportunities to orbit him for a change.
3. Braving Play Dates
Speaking of play dates, how have we learned to manage the tricky hand-off to other adults without diabetes expertise? It is definitely a challenge. I always feel pressure to strike the right balance with information. I want to give enough information to convey the seriousness of diabetes and to adequately instruct the person to manage it in my absence without scaring him or her away. The truth is, some people are scared away, but many are willing to take on the responsibilities of diabetes. In this situation, it helps to provide a cheat sheet for the caregiver to reference and a promise to pick up the phone on the first ring. I also take extra precautions, such as giving a few extra carbs to prevent a low or arranging for more frequent glucose checks.
4. Distancing Myself from Diabetes
Honestly, there is no escaping diabetes. Even when my daughter is under others’ trusted care, diabetes is on my mind. But I have noticed that there is one task in which it is more remote in my mind: reading. Perhaps because reading is so private and personal, it helps to drown out the other noise. My advice to other parents: find something that allows you to retreat. Even if you cannot fully escape diabetes, the distance is rejuvenating.
5. Guarding Downtime
My spouse and I are protective of the weekends and the hours outside of school. We limit organized sports, and we never over-enroll in activities like scouts, camps, or other events that require planning and driving. It’s not that our kids wouldn’t enjoy more activities—I know they would. Frankly, managing diabetes is exhausting, and we don’t have much bandwidth to spare. This may change as our children age, but for now, we just can’t commit. And guess what? Our kids still live charmed lives.
6. Putting Things in Perspective
It never hurts to remember that, just as we are burdened in some respects, we are privileged in others. Our family’s “mountains” may appear like molehills to others. The more fully we appreciate this, the more fully our daughter will, as well.
To read more from Audrey and others living with type 1, visit InsulinNation.com.