Three months; twelve weeks; eighty-four days; two-thousand sixteen hours; one hundred twenty thousand nine hundred sixty minutes; seven million two hundred fifty-seven thousand six hundred seconds–how do you measure a quarter of a year? Even though I loved it, this post has nothing to do with the Broadway musical “Rent” (it was the first show I ever saw on Broadway, and these words resemble, albeit badly, words from one of my favorite songs from the musical, “Seasons of Love”). But diabetes has nothing to do with “Rent”. “Rent” is the story of a group of young people trying to survive under the shadow of a horrible, incurable disease…….hmmmm.
Medium was diagnosed with type I diabetes three months ago, in the winter. Now it is spring. A season seems an appropriate amount of time time. Appropriate amount of time for what? I feel like people think I should be “over it” already. That enough time has passed that things should just be back to normal now. That a season should be enough time to figure out how to live our new lives and just accept that “life goes on”. And it does. Life does go on. The cool, rainy afternoons of spring will, no doubt, make room for the hot, lazy days of summer. And certain things have gotten easier. I know how to count carbs, I know how to handle lows, and I can change out the reservoir set on Medium’s pump in less than 5 minutes. Diabetes doesn’t consume my every waking moment (and most of the sleeping ones too) anymore.
But you know what? No matter how many winters melt into spring or summers fade into fall, Medium doesn’t get better. If anything, he gets worse. Elevated blood sugars over time will wreak havoc on his body in the years to come. No matter how much time passes, we will still have to check his blood sugar 10 or more times a day, we will still have to count carbs and deliver insulin with every meal, we will still have to check his blood sugar overnight (or worry about him), we will still have to see the endocrinologist every 3 months, we will still have to bring snacks and rescue supplies with us wherever we go, we will still have to teach every caregiver, teacher, friend, school nurse, or coach he ever comes in contact with about his disease and what to do in case of an emergency. It never ends. The worry, the fear for his long-term health, it takes it’s toll on us. All of us. We are exhausted; mentally, emotionally; physically. The stress it has put on this family is immeasurable, yet palpable.
But most people think that we are “fine”. We are still going to work every day, the kids go to school and keep up with their activities. We are going through the motions. Everything seems “fine”. We don’t really have a choice.
But we are not “fine”.
We will never be “fine” when the health and well-being of one of our kids is threatened. So until there is a cure, we are not “fine”.
So feel free to keep asking us how we are doing, or if there is anything you can help us with. Feel free to continue to pray for us and for a cure. Remember that as the seasons change, our efforts to keep our son healthy don’t. Feel free to let your heart ache for Medium and what he has to go through. Because no kid should ever have his life threatened and his innocence ripped from him. And no family should have to helplessly stand by and watch it happen.