Guarantees Will Be Offered

Today is the birth day of our younger son, Isaiah. It is also the fourth birth day that we have celebrated since his death at age five.

Whenever my brother-in-law and I share space, he offers me the small kindness of asking about Isaiah, about how I am missing him, what that looks like. He wonders if it looks like imagining Isaiah at age nine, as he would be if he were living.

It does not. Isaiah never will be nine, will never be more than the five years we shared, for my own reasons of not wanting to fall down the rabbit hole of what could've been. I have what is.

When I was five months pregnant with Isaiah, I underwent the standard ultra-sound. Afterwards, the nurse called and said they were unable to see all the chambers of his heart. She said it was likely a fluke but that unless I came in for a second ultrasound, they could not guarantee that everything would be perfect. I assured her that she would not be able to guarantee that regardless and opted out of the second ultrasound. From that moment, my mind jumps to the day, after several sessions, that we stopped occupational therapy. The therapist expressed concern that Isaiah did not color with the skill of his peers. And again, a jump, to the last hospital stay, the last series of tests. We asked for hospice and the cardiologist urged us to continue treatment. There could be something else that could prolong his time with us.

So many guarantees are offered, all with the perception that there is one direction in which your child's life should head, some perfection for which you must reach. I carry these images and thoughts with me as I remember Isaiah, as I live with Cutter. As I try to remember that nothing that I do can guarantee his happiness, his health.

I forget. I worry about vegetables and exercise and video game content. I read and I overthink and then, of course, I remember again. I remember that it was not Isaiah's "normalcy" that endeared him to us. It was his wild way of shouting LIGHT BLUE, the way he laid all out on the floor so he could better see the wheels of Thomas move along the track, the way he wrapped his hands in your hair to fall asleep, the way he smiled that giant smile even after puking. Yep, there was no sort of normal about that boy - and he was amazing.

I remember that there are no guarantees. That I could make Cutter eat every vegetable known to Mother Earth, demand he exercise the recommended thirty minutes every day, limit his video game time to one hour a day - and he could still die.

I remember that the day is made by what joy we allow in, not by what we're trying to keep out. So, today, I will let my sleeping boy sleep on. We will buy giant, fancy cupcakes to celebrate our missing boy. We will play with our sackboys on Little Big Planet and shoot each other on Black Ops. We will read on the couch and wrestle on the bed. We will be weird and wonderful and imperfect. Today, I remember.