Last night, as I was trying to get Alex to sleep, I looked up my long-dormant private blog to find the letters I had written to my future baby during the year of emotional and hormonal upheaval that was two miscarriages and a growing concern that I might not be able to ever get past eight weeks of pregnancy, the discovery that supplementing progesterone could keep a baby in there, and the fear, the closer I got to my due date, of losing him as my heartbeat synced itself to his. I lay there nursing and reflecting on how we hope, and we plan, and we bring these little humans into the world thinking we know what we can expect of our lives with them, and then we can only hang on for the ride when sometimes, we realize the ride looks nothing like we thought it would. Then I signed into my blogger account and retrieved this letter, written at the very beginning of our baby journey.
since you don't exist yet, I don't have a name to call you. Any name I would give you at this point would define you, and I don't want you to be defined by anything but you. As time goes by, the circumstances of you will define you, but for now, you are just you.
How do I introduce myself to you? I am your...I am me. I want to be your mother, and I hope I will be, and if i never am, it will break my heart. We have waited so long, just the two of us, and we have done so much and we have gone through so much, and now that we have finally come to the realization that we are ready for you, I want nothing more than to hold you in my arms. Today. I don't want to wait. I love you and I want you, right now.
Whether you will come from us or from someone else, I honestly don't care. I want to show you that nothing matters, whoever conceived you and carried you could never love you as much as I do. But adoption is a long process, and B wants to try to have our own baby first. He says he does not have the energy to deal with beaurocracy and home visits, he would rather deal with a pregnant wife. So right now, it is all about timing and trying to be in the same place at the same time, because it's a little hard to make you without physically being together. B has lived in Kansas for two and a half months, but I have only spent about a week in Kansas so far. I am still living in Colorado. I was pregnant, but six weeks later I miscarried. I thought that maybe that was you, but it wasn't. That was something that wasn't going to happen.
Any way you come to us, I want you to know one thing. I can't wait to meet you.
I could give you our history, but I think you will hear enough of it. Maybe, as time goes on, you will need to know, and I will tell. But right now, it seems a little bit exhausting to me to recount it all. I am living in the future right now. I like it there. You are there. I love you.
Love, Me.
Reading those whispers of love echoing from the me who was not yet a mother, but at the same time so much more of a mother than I am some days now because I was not distracted then by the day to day stuff, I feel I could learn a lot from that sad would-be mother who would have given anything to meet her child. The ride we are on is all a part of what we hoped for- the chance to love fully and unconditionally. No matter the places the ride takes us. Knowing there is a place the ride could go that is a dark place we almost never dare visit because it is just too horrible to think about- that at any given time, we are only a breath away from returning to a time before this new light switched on in our lives. To have the world be as it was before them, only now to be aware of the beautiful personhood of that little person who took your heart, to have felt the reality of their presence. And suddenly to find yourself sitting there, surrounded by everything they surrounded themselves with, but no warm little presence that is them, that is too horrible to think about. The cold that is so much colder in the absence of the constant, trusting warmth and gentle touch. The loneliness that is not only their absence in the moment, but the absence from every future moment. The contrast between the life that made your life mean more, and the sudden darkness you can't even allow yourself to contemplate, should that life be snuffed out.
When you hear the words, your child has an illness that will kill him if not treated with a treatment that may also kill him, you crack open the door to that dark place, and then, when you see the darkness with your own eyes, you realize there is no way you can go there unless there comes a time when it gets so bad there is no other place you can go. So you close that door, and every time those horrible fingers rattle the knob on the other side, you throw your back to it, lean your weight against it, and stare straight into whatever source of light you can find, burning it into your retinas, and you focus on petty things because anything is better than that door and the darkness behind it.
As I was lying there with my babies snuggled against me, reading the love letters I had written to my future child, seventy miles away in the hospital we had left a few hours earlier, absolutely out of nowhere, even with their backs pressed firmly against it, our friends Mike and Traci's door suddenly flung wide open and swallowed them. At 9:46, Daniel's little friend Simone took her last breath. On a normal, everyday sort of evening in her hospital room, where she was staying because of a cough, her breathing suddenly became labored. Within twenty minutes, she was down in PICU. And twenty minutes later, she was gone. Completely unexpected. One moment, ordinary and "normal", just playing the hospital game of waiting, and then next, gone. I had decided not to go see her on our way out of the hospital earlier because we were discharged during rush hour and wanted to get home as early as possible. Silly, now, in hindsight. I should have.
Yesterday the world was insanely cruel, but made more sense than it does today. Yesterday the world had her in it. Yesterday, her mom was another breastfeeding mama with a sweet little two year old constantly asking for boob and comfort, trying to not go crazy in isolation. Today, the baby who has been the center of their universe for the last two years is just...gone. Leaving nothing except toys and clothing, her dad's empty arms, her big sister with a missing sibling, her mom's painfully full breasts. No gentle warmth and tiny, exploring fingers, no big smiles and little giggles, no trusting gaze letting her parents know that in her eyes, they were the whole world, as she was theirs. The weight of the nothing she left behind is just crushing, even to us, standing on the threshold of their door looking in, blown away by the sheer magnitude of the emptiness behind it. We have both cried off and on for hours, crushing our babies, their warmth and their life, to us, wrapping our hearts around them so tightly that if they are ever torn away, eveything we are will be torn away as well.
And this happens every day. Everywhere. To live is to know joy and then, suddenly, unimaginable pain. To be a parent is to wear your heart outside your body, where anything can happen to it. And to do your best, knowing that your best is no match for a tiny body bent on self-destruction and the treatments that wear it out to the point that they can no longer fight.
This is Simone, the last time we saw her, two weeks ago on the day after her relapse was confirmed. This is warmth and love, trust, soft skin, tiny hands and feet, new hair, fragile hope for a successful T-cell trial that could still save her life. The world without her just doesn't feel right.
We should be sad, but we should also be furious. Because if more than four pennies of every dollar donated to cancer research went to cancer patients under twenty years old, some treatment lying in theoretical form in a dusty drawer somewhere because it never received funding to move beyond theory might have saved her. Instead, the treatment she got wrecked her tiny body until it just couldn't hold her inside it any more.
She is loved, exquisitely and completely. But she deserved more. She was supposed to grow up. It wasn't supposed to end like this.
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