This morning, I walked Rebecca and her best friend to kindergarten, all of us enjoying the crisp spring sunshine after the long, cold winter. The girls ran ahead of me to see if the playground had been re-flooded by last night’s rains (it hadn’t) and then balance-walked a low retaining wall. Once inside the school doors, I hugged and kissed Rebecca and told her to have a good day, collecting a hug and kiss and a “Love you, Daddy“ in return. I watched as she tromped down the hallway in her sparkly new Bella Ballerina shoes and pajamas (today is a special Pajama Day at school) and rounded the corner out of sight. And then I handed her principal a Do Not Resuscitate order.
She’s still so alive, so very vital, but we know that could change at any moment. We’ve lived through it once already, last August, when she went from playing on the beach to the literal brink of death in just three days.
We carry DNR cards with us, and have given the school a DNR form sealed into a manila envelope with our names and phone numbers written on the outside, because if she suddenly seizes, our overriding goal is to make her as comfortable as possible while she dies. The EMTs or hospice or we ourselves will give her medication to take away the pain and, if at all possible, the fear. As much as she needs.
Because we know what will happen if the tumor induces seizure and she’s forced back to life. We know that once it’s reached that stage, there are mere hours left, even if we permit life-prolonging measures. Heroic measures, they’re called. Hours, possibly days, spent in misery and pain and fear.
We can’t do that to her. If there were a reasonable chance of her suffering leading to a cure, yes. We did that last August, submitting her to multiple surgeries and the difficult recovery afterward, because there was reason to think that doing so would save her life.
Now we know better. We know that when the cancer overwhelms her, there is nothing that can stop it. We know that the best we can do is make what’s left of her life as normal and happy and full of love as possible, and minimize any horrors as it ends.
We’ve thought about pulling her from school entirely. That would ensure that if she does have a sudden seizure, she’ll do so with one of us. By sending her to school, we risk it happening when she’s not with us, and inflicting that experience on her schoolmates instead.
We send her to school because she loves it there, however much she may complain about having to get up in the morning and get dressed and put on a coat to walk to school. Try as she may to hide it, she loves to learn. She loves her teacher, her classmates, and her friends, and they love her in return. It would be selfish of us to take that away, despite the risks, despite the hours of separation. It would shift some of our burden onto her shoulders, force her to pay the cost of our sorrow and fear.
There are so few things we can do for her now, so very few things, but we can do this: we can give her her life, as whole and unbroken as we can manage, and an unspoken promise to fiercely guard it from even ourselves. We can give her this. Our last gift.