05 October 2010
The poor baby just couldn't catch a break.
Everything that could have gone wrong, did. Every time we heard "this hardly ever happens", "this is what we see in very extreme cases", and "it's very unlikely", that was Ewan. Even the statistics that were less than 1% seemed to apply to him. To us. If there was a minuscule chance of something going wrong, it did. If there was a small chance of him not having something he needed, he didn't have it.
One important thing to realize about Tetralogy of Fallot is that there is a wide range of severity, and a broad spectrum of anomalies that can go with it. The analogy that I came up with and that our doctor agreed with was this: saying "Tetralogy of Fallot" is like saying "I'm bleeding." It could be a paper cut, or it could be a gunshot wound. Ewan had the gunshot wound kind of Tetralogy of Fallot. He had pulmonary atresia on top of it, the smallest pulmonary arteries they ever dared operate on, and no identifiable PDA (a blood vessel that is open in the heart in utero, and normally closes a few days after birth). If he had had a PDA, he might have stood a chance.
In other words, one case of Tetralogy is definitely not like the other. In other words, Ewan had a heart that was not meant to sustain his life.
Even as I am able to say honestly things like I did in my post yesterday about hope and seeing God's hand in all of this, I hold this in tension with it an unspeakably deep grief. Anger, too. Anything can precipitate a cascade of tears and sobs. Nothing at all can give rise to the same, and then there I am, on the floor wishing that I could cry even harder, cry hard enough to feel like the crying mattered.
After I got out of bed this morning, I saw the little stuffed monkey the nurses had given him to cuddle with post-operatively. He always had one arm tightly around it and was noticeably irritated whenever they moved it or took it from him as they assessed him. I lost it.
I miss him so much. I want my baby back. This isn't fair. My baby. My sweet, sweet baby!
These are the words that run off my lips in those moments, over and over and over. This is what I tell God. I will never get to hold him again. I will never feel the softness of that baby skin or the silkiness of his hair. I'm already starting to lose the sweet smell of him. Everything cries out: it shouldn't be this way.
The only moments I saw him without tubes and tape all over him were at his birth and at his death. I never got to see him without slathering my hands in Purell. Save for the moment he left my body and was placed on my chest, I never saw him without the permission of his nurses.
And now I grieve things like the fact he never got to be outside a hospital setting: I will never get to watch him sleep in his crib, dress him in the clothes we bought for him, change his diaper, or nurse him. I will never get him back, and he is precisely the one I want. Only him.
I know we are probably going to hear some well-intentioned but hurtful things in the coming days and weeks. Things about having another baby someday, about how happy he must be in heaven, and about how I shouldn't be sad because he no longer suffers. I hope I'm able to communicate in those moments that grieving Ewan (that grieving any loss, really) is not a black and white matter; it's not either/or, but both/and. I can trust that he's in heaven and rejoice in that, and I can acknowledge that we will be feeling the loss of him acutely for a long time -- probably our whole lives. I can rejoice in the truth that he is not suffering anymore, and weep bitterly over the reality that he isn't with us, that we did not get nearly enough time with him. I can be happy that he doesn't have to be sliced or poked or taped or stitched ever again, and desperately ache for him to be back here with us. One reality doesn't cancel out the other. We hold them in tension, with all the uncomfortable complexity and unfathomable mystery that such nuances create.
I miss that sweet baby boy so much. I miss how intently and knowingly he would gaze at me, not just with his eyes but with his soul. I miss his fingers curled around mine. I miss having him under my heart, feeling him roll and stretch and kick. My sweet, fierce little Ewan. You took our hearts with you.