D Day (Diagnosis Day Anniversary, for the Layperson)

Today marks the 2-year anniversary of the day Keaton was diagnosed.

I’ve learned a lot in the last two years.

I’ve learned so little.

I’ve learned that my child holds a mind-blowing reserve of strength in his soul.

I’ve learned I’m not nearly as strong as I thought I was.

I’ve learned that no one, NO ONE, really gets it. Even the people who “get it,” don’t really get it. Unless you are living it everyday, there is no way to truly understand the hell that is this disease. Even Kevin doesn’t get what it’s like to the principal caregiver for a child with this disease. The constant stress and fear, knowing that one tiny lapse can have catastrophic consequences, is unknowable unless it is your reality.

I’ve learned that even I don’t really get it. The pain my child holds inside him is his alone. I can’t take it away, and I can’t understand it.

I’ve learned that helplessness before your child’s pain is the worst feeling a parent can experience.

I’ve learned that two years ago, when Kevin and I sat in a hospital room on the scariest day of our lives and made a pact that we absolutely would not cry in front of him, that we would go to the hall if we needed to cry (and we spent a lot of time rotating out to the hall), we were fools.

I’ve learned it’s okay to cry in front of Keaton. To cry with him. To cry for him when he is too exhausted to cry for himself.

But I’ve also learned it’s not the end of the world we thought we faced two years ago. It is a daily struggle, an hourly struggle, a constant struggle, but there is a rhythm to it if you listen for it. The idea of calculating an insulin dose that varies based on what he’s eating, what his blood sugar is before eating, what his activity level was before eating, and what it is likely to be after he eats was a terrifying concept 2 years ago. It seemed impossible to ever get it right. But over the last two years, I have developed instincts I never would have thought possible. I can read a low in my child’s body from across a crowded room and predict a high hours in advance. I’ve also learned that there is no such thing as getting it right. There is nothing predictable about this disease, and there is no way to really control it. So I’ve had to learn to accept that and not feel like a failure because of it.

I’ve had to learn not to let it consume me. A year ago I started forcing myself to have time for me, and the fear was nearly crippling when I left the house. But over time I realized that not only was the break refreshing for my spirit, it was also good for Keaton’s. Knowing I could release control makes the idea of his disease less scary for him. And it makes him feel more like a “normal kid.”

I’ve learned it is crucial to make him feel like a “normal” kid.

More than anything, I have learned that I have so much to learn. But unlike that afternoon two years ago, when I felt crushed by the devastation of what was happening in that hospital room at Cardinal Glennon, I am ready to accept that for what it is.

Because every day is a failure when you are dealing with this disease. But every day is also a success. I’ve learned to focus on the success.