Shadows

It’s been a minute since I’ve blogged, and for that I apologize. We got the hard news a week ago Monday that Rowan, one of our 8 year olds, also has Type 1 diabetes. We already went through this with Willow five years ago and for that reason, we’ve already overcome much of the logistical difficulty of the disease. Carb counting? Check. Giving shots? Easy. Keeping calm in the face of out of whack blood sugars? We’re veterans.

We also have relationships with the endocrinologists at Children’s Hospital, which meant that Rowan’s diagnosis experience was much less traumatic than Willow’s. In some ways that’s almost harder. This big, giant thing, and we’ve just got it handled. But the feelings still exist. The pain and frustration and lack of control is still here. And to all the world, because we know how to manage it, we should be doing just fine. We’ve spent a lot of days and nights fighting with Rowan over shots and crying over how much this all sucks. Knowing it will pass makes it easier to bear, but some days are still unbearably rough.

The last part of finding out about a serious illness is one that no amount of experience makes easier. Ever since Willow was diagnosed, and especially once we got over the shock, I came to realize that we have learned to live with a constant awareness of death. It’s like a shadow that follows us wherever we go. I’ve worked very hard not to have a family culture of fear, but I would be lying if there wasn’t a part of me that is always aware that my kid’s life can end with a single mistake on my part.

I don’t think that’s a bad thing. There’s the whole “eat, drink, and be merry, for tomorrow we die” thing going on. We make sure to say the things we want to say and to make up from disagreements. If the girls want to go on some adventure or cook up some crazy scheme, I’m that much more likely to say yes. We live knowing that while very unlikely, one mistake could mean that my child’s life is cut short. We live, making sure to always offer the extra hug, because we just never know. Of course it will all work out. But it might not.

I’m not being overdramatic. Things happen from time to time and as the news reverberates around the diabetes community, we hear each sad story with a pang of kinship. We don’t know the names but we could become them. One mistake and we could become them.

The events of the news this week yet again remind me of our own struggles. Once again, young Black boys and men are being killed for what? For air fresheners and traffic stops? Black families across the country live with their own constant awareness of death. Each sad story brings a pang of kinship. One mistake and that devastation could be brought to the front door.

Here’s the difference. My kids are in danger and other than what we’re doing every day, there’s no solution. I can push and push and rage and rage at the futility of it, but until science catches up with this disease, we’re stuck. We have to learn to live with it. But black families live every day with that shadow for no damn reason. It could change, if only we cared enough to do something about it. I get angry enough knowing that my kid suffers and fears over an incurable illness. But if I didn’t have to live this way? If there were something our society could do to make it better, but they weren’t? I would lose my mind. Black people in America have to learn to live with it because we simply can’t be bothered.

Well, enough is enough. We have to be bothered. When something happens over and over and over again, it’s not an individual problem. There’s something wrong with the culture and it needs to change. I don’t have much influence, but you had better bet that I am going to vote for civilian leadership over our police forces. I am going to vote for people who will make sure that the regulations we already have are actually enforced. Every small choice we make to build a better world takes us one step down that path. Together, our thousands of small steps can make real change. We must never stop seeking out ways to help families get rid of the shadow of death. I don’t want more company here than I already have.