I was reading a book, The Forgotten Garden by Kate Morton (a great read, by the way, I HIGHLY recommend it), and in the book, one of the main characters gives up her baby. Her description of pregnancy made me think back on my own pregnancy.
I think back 0n the 287 days that Noah grew inside of me and I remember how I used to spend a lot of my time thinking about him, what he’d look like, who he’d grow up to be. I’d rest my hands on my growing baby belly, looking at my ever-changing body. I went through periods of sheer fear (telling first Caleb, and then our parents that I was pregnant), elation (we were having a boy), disappointment (I originally wanted a girl), annoyance (everything and everyone I encountered), pride (“When are you due?”), contemplation (what are we going to do?, how will we raise him?), and everything in between.
I think back to those times, when Caleb felt the first kick, and when he put my hand on my stomach so that I felt it too. There was so much promise, so much hope. For the first time in a very long time, I was happy. I was able to do what many women can’t, and I did so with relative ease; I was able to carry a baby to term, a seemingly healthy baby.
The character’s description of her pregnancy brought all that back for me, but when she describes the love she feels for her daughter in the first few days of her life, it reminds me of how I feel like I haven’t really bonded with Noah yet. He still doesn’t feel real. I think it has something to do with survival. I spend every day thinking that his seizures are going to come back, that any minute he’s going to stop breathing (apnea was a comrade of his seizures). I’m not bonding with him as I should because I’m afraid…..I can’t get too close, or if I allow myself to, something will happen and he will get ripped away from me.
That thought terrifies me. As grateful as I am that he didn’t pass away when he was supposed to, just 6 and a half weeks ago, I feel like it’s all too good to be true, in a sense. He can’t have gone from “brain dead” to “wait and see” in just 4 short days. It’s like a trick; an illusion of health.
I hate living like this, but it’s reality. I go through my day knowing that no matter how healthy he looks on the outside, Noah is one very sick little boy on the inside. I hate living with the guilt of “If I had just gone for the induction a week early…” or “If I would have been better at breathing with the oxygen mask…”. I hate the “what ifs” almost as much as I hate the ever-present uncertainty.
I also think back to the day he had his seizure. After the initial news hit, I didn’t cry again until we were on the road to Edmonton. I spent the entire 6 hours between his seizure and us finally getting on the road completing the necessary series of tasks needed to get us there. I had a clear, concrete plan of manageable steps that I could take. I think it helped me because it was something I could control. It was me that tracked down the nurses and doctor I needed to get discharged, I got in contact with the social worker at the Stollery, got us a hostel room for the night in Edmonton, set up a stay at Ronald McDonald house for the following night (which we didn’t end up using), etc. I had a check list of things we needed to do; that I could deal with. There was no uncertainty, just “Get to Edmonton…..and then we’ll figure things out”.
Now that my entire day is clouded with uncertainty, it’s a bit like being stranded outside in a storm. You have no idea what’s going on, but you just try to make it through and weather that storm.
It makes me sad that I haven’t bonded with Noah as much as I should have by now, and it makes me sad that I have a shield up when it comes to him. People ask how he’s doing, and of course I fake-smile and say “better”, and when they say something like “I’m so glad he’s alright now”, I fake-smile again and try and pretend like a giant weight didn’t just appear in my throat. Because the thing is, he’s never going to be “alright”. There’s always going to be that thought, “Is today the day?”, for literally the rest of his life.
I’m also fairly tired of people calling him a “miracle”. I know that you all mean well, but it’s starting to grate on me a little bit. When the doctors tell us that they have no idea what his brain damage will appear as or if he’ll have another seizure, please do not make it out to be like my child is cured. HE IS NOT CURED. HE IS NOT PERFECTLY HEALTHY. HE IS NOT “NORMAL”, NOR WILL HE LIKELY EVER BE “NORMAL”.
And that sucks, it really does. I have so much fear; for him, for me…I wish that I could just be a normal, scared new mom, and not a new mom terrified that her son is going to die at any moment. I can’t help but feel like maybe I deserved this, somehow. I had a perfect pregnancy, and then at the moment that it’s all supposed to come full circle, that moment of his first breath, first cry, when I hold him against my chest for the first time, his cord still pulsing…….that moment was taken away from me.
For that I feel cheated. The whole time, I had expected my labor and Noah’s birth to go the same way as my pregnancy had gone, but PSYCHE, nope, sorry sweetie, you lose this round. I feel so much anger because of that.
I’m angry at myself, like if I would have done something differently, he WOULD be a normal, healthy little boy. But I’m also angry with whoever it was that decided that I’d be dealt this hand. What did I ever do? Why is it that crackheads and prostitutes can go on and have perfectly healthy babies, while I, who did not even have a SIP of alcohol my entire pregnancy, get the short end of the stick in the life lottery?
It. Is. Not. Fair.
You hear the cliche, “Life isn’t fair”, and really, no shit. Noah is living proof of that.