As much as I write, I can’t find the words to explain what it’s like to know that you can never hold your baby again, that you can never see his blue eyes, hear his little voice, or run your hand across his fuzzy head. You can never say the things that you wonder if you said enough. You can never go back and hold him that time you paid the bills instead.
He’s gone. He’s gone for always. As much as I love my daughters and my husband, as much as I have a rich, full life, there is part of me that died with James. That part will always be with him. There is part of me that shudders at the possibility that I have 50 or more years to live without him here. There is a hole in me that can never be filled. And disbelief persists. There is still somehow an unreality about his life and death. As if I believe it didn’t happen, that he’s just in the other room, sleeping peacefully.
His birthday approaches so rapidly that I cannot believe it. This time, one year ago, I was swollen, uncomfortable, and terrified. I had no idea what the future would bring. I only knew that my baby boy was sick, terribly, terribly sick.
This week is the SOFT conference. SOFT stands for Support Organization for Trisomies. It’s an annual conference where families of trisomy children come together to learn and to meet and support each other. Many of the friends that I have made in the trisomy community are there with their children. I see the pictures on Facebook, and I wonder “why not James? Why not us? What did we do wrong?”
You see, I’ve always believed that if you do everything just right, if you follow all the rules, if you look far enough ahead, you can figure it out. Whatever it is. With James, I tried to foresee every eventuality. I tried to navigate the path through the dense woods. I tried to find the RIGHT path. And when he died, I wondered where I had turned down the wrong path – where the medical establishment had turned down the wrong path. Because, clearly, it was our fault somehow that he died. It was something that we did wrong, some decision that we made somewhere without realizing the consequences. Was it the tracheostomy tube surgery? Was it stopping his support when we did and letting him go? Was it not waiting longer to see if he would recover?
It all comes back to the idea of control. We have none. We think if we do it all right, then somehow, we win. We don’t. Any moment, any second, something comes along that we have no control over – whether it’s pulmonary hypertension or a packing truck and an irresponsible driver. Life is out of our control. Death is out of our control. Realizing these facts is utterly petrifying.
I try to tell myself this, at night, when I lie in bed, unable to sleep. When James’s life plays out on the movie screen of my dark eyelids – I tell myself that we did our best. Even doing our best, he died. Even loving him with every fiber of my being, he died. When I see his last 48 hours, I go through it all again, the questions, the what-ifs, the other endings that we didn’t have.
Little boy, I wish you were here. I wish you got to grow up with your sisters to protect you. I wish I could hold you one more time and make sure that we told you everything that we meant to say. We love you, now and forever.