While diabetes can be managed by insulin, and while my son will stay alive with this medical intervention, it is a far cry from being simple.
Living with diabetes, is dealing with diabetes. It is making the choice that each day you will be present and take part in the active management of diabetes. It is anything but simple. There are no days off with diabetes. It is an ever present disease that demands to be managed, some days it seems hour by hour. It is a chronic illness.
Recently there were a few days that Blaine remained in the 200s, no matter what we did. During this time as I was trying to determine what I must be doing wrong, I had this vision of us climbing a mountain.
I could see us climbing this mountain at all times of the day. We were climbing as the air was crisp and chilly, while the sun was rising. I could feel us climbing in the middle of the day as the sun bore down on us and we were tired, thirsty and out of breath. Then I could see us climbing still as the sun was setting and we were hungry and shaky. I could feel us climbing and willing ourselves to keep moving throughout the uncertainty of dark nights on this strange mountain. We were climbing this mountain that I never could get a good glimpse of the top. All of my energy was focused on climbing upward and encouraging Blaine to keep climbing with me. While we climbed I’d see other kids Blaine’s age skip, jog or run past us. They laughed and ran upwards without looking back while Blaine and I grabbed onto boulders to pull ourselves upwards with bloody fingers and distant looks in our eyes.
But I knew what would be on the other side.
I knew that if we could just get to the other side, Blaine would have all the things that his peers would have on the other side. The things that they would have without the battle of the climb: their eyesight, their kidneys functioning properly, their heart functioning and no nerve damage. These were the things Blaine could have too, if only we decide to climb the mountain every day.
While many days the mountain is every present and every inch of the climb can be felt, there are some days where rest can be found. Those precious days when his blood sugars stay in range. These are the days that he feels great. He is a funny child with a quick mind and great sense of humor. He is articulate and determined. Whether he is determined to lobby for a pet pig (which has been going on for nearly a year, although he has dropped his ban on eating pork products) or to work out to doing 150 pushups and sit-ups each day. These are the days when I don’t feel the climb.
I can sit back and rest for a minute and enjoy the view. I don’t worry about his fingers becoming raw from the constant pricks. I don’t worry about his extremities becoming numb or him losing his eyesight. I feel like we can sit back and breathe in the mountain air and reflect on how far up the mountain we have climbed in these last 5 months.
These are the days when I can be thankful. I can be thankful that I still have my son. A century ago he would have been given 6-12 months to live. I would have had to watch him wither away as he lost his eye sight and kidney functions. I would have had to watch his body turn on himself and then watched him die as I stood by helpless.
To an extent I am still helpless. We are fully dependent on the insulin he receives via mail delivery to keep him alive. It is a conscious choice that must be made each day. But we have the tools to keep him alive, and if we chose to engage in the climb each day we can keep him healthy too. His risk of complications will always be there, but hopefully we can manage them by actively choosing to climb each day. No one knows how many days any of us have left. Worrying too far into the future is futile, but making active choices to prepare now for the future is key. Enjoying each moment and choosing to live each day is what is most important, we cannot let tomorrow rob us of today as long as we are doing our best each day.
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