Sitting in this darkened and stilled hospital room, gazing at my baby, I ask myself – are we doing the right thing? Are we helping James or only trying to stave off the inevitable. When is enough enough? When is it too much?
I felt like I knew the answers a moment ago, when the sun was up, when the hospital was bustling with personnel, all going about with one thing on the agenda – to save lives. But now the PICU is silent, James sleeps in a drug-induced haze, and I am left with my questions, with my doubts.
We can’t stop time. It inexorably marches forward – whether we are willing or no. I rejoice at the fact that in a couple of days, James will have his 5th month birthday. Oh, the joy that he is still here with us, a fat and sassy little baby. I never dreamed that at 5 months, he might still be here. I wanted it, of course, but I didn’t let myself think that it would happen. Too much heartbreak down that path of longing. And now he’s here, and we must guard the sanctity of his life, the sanctity of his experience, however brief.
Will he tell me? Will I know when we should stop?
I both believe that he will die eventually – at too young of an age – and I don’t believe. I look at him, and my heart tells me that it isn’t true. My brain calmly argues the counterpoint. He has trisomy 18. He has a bad heart. His body wasn’t formed to be long for this world. No amount of “fixing” him will undo the damage of that damned third chromosome.
I can’t hold my baby now to soothe him. I can barely move him until his trach site heals. Day 1 has passed with me being only able to stroke his head and sing to him. It’s hard to sit here in this quiet room, alone with my sweet babe and my thoughts. I feel sometimes like I might be going crazy. There is such a dichotomy right now inside of me. I am both elated and full of sadness and anxiety. Since June 20, the day we heard that the non-invasive testing was positive for T18, I haven’t taken a deep breath, and I haven’t exhaled properly. I’m always, always holding my breath. Always waiting for that next thing. Always waiting for that moment when I have to say goodbye.
It might be slowly driving me insane.
I have started to frantically seek validation from everyone around me. I need to be told on a daily basis that I look nice, or that my blog post was moving, that I’m an incredible vet, or that I’m a strong mother, or something that validates my sense of self. I’ve started to obsessively worry about looking my age, about no longer hearing “but you look too young to be a doctor!” Being James’s mom is almost like being a celebrity. So many people follow him, care about him, and by proxy, follow and care about me. In some twisted sense, this attention makes everything easier to bear.
I can’t explain why I am suddenly desperate for attention, for validation. It’s like I’m covering some deeper emotion – a sense of failing James. Truthfully, I feel like his trisomy is my fault. I’m the one that did this to him, and so I look outside of myself, to others, to validate that I am not a failure, that I didn’t cause James to be broken. I am desperate to deflect attention to my talents rather than the fact that I bore a broken baby and that I cannot fix him. I cannot save him. I can’t do the one damned thing that a mother is supposed to do – protect her child. If I build a shell of attention around myself, this persona of doting mother, fervent writer, stylish dresser, witty conversationalist, supporter of struggling families – then maybe people won’t see through it, through to the core of my being, through to where I really live, the mother that failed her son.
My heart aches tonight, so much. But I still have to get up and go to work in the morning, I still have to take care of my girls and my husband. I can’t just lie down next to James in his crib and give up. So I won’t. And tomorrow, when sunlight floods the mountains, I’ll find my sense of center again, and keep going, keep smiling at the world. Keep trying to become the person that people already think I am.