You never think that it will be your baby who ends up in the NICU. It won’t be your baby who has a broken heart and broken lungs and other little broken bits.
That happens to other people. Other people and other babies who are not you and certainly not your baby.
But then it does happen and everything you once thought you knew about life is indelibly, violently changed. Watching your baby suffer and living in the uncertainty that comes with life in the NICU – or any ICU, alters your soul, the core part of you, in a way nothing else can. Regardless of the outcome, life is never the same. You can’t ever go back. Your heart is seared with the terrifying realization of both the fragility of life and of the singularity of the child you love with such fierceness it consumes your entire existence. Were this particular child to no longer be here, there is the sense that it would be a loss for the entire universe.
My heart broke a hundred times a day our first month in the NICU. Each hard moment came like a wrecking ball to my heart, over and over until I didn’t think I could bear another moment, another procedure, another hard day and night, another second of my baby’s face distorted in pain. But I do keep bearing it and my heart does keep breaking. Huge, weighty pain. Like when you pound your finger with a hammer and there’s nothing that makes it better.
My baby boy has been on this earth for 8 weeks and I’ve not yet heard his cry or seen his face without the tape and tubes that are keeping him alive. I ache that I’ll never have those sweet delicious first weeks of life with my boy, tracing the pattern of his fingers and nose, snuggled close. I mourn this loss deeply.
It takes a team of people to move him from his bed to my aching arms. I’ve not breast fed him and though I pump day and night, 3am in the dark of my hotel room while he is in a hospital down the street, his little body has had a hard time with food. I ache that we sleep in separate buildings, for weeks and now months. I feel as though my very DNA has been altered by all of this separation – like I am missing a limb or organ.
I’ve lived in a place where the walls know death all too well. Where it is always lurking, always nearby. Where mothers leave with empty arms and ache that has no words.
Procedure after procedure and I’m discovering that waiting rooms are the place of wrestling hearts and battles. The TV in the background and my eyes locked on the door waiting for someone in scrubs to walk in and tell me what I ache to hear. Prayers for Jesus to wrap my boy and be to him what I can’t be in this moment. I believe, help my unbelief. My heart is in my stomach and I would give my own heart for his, my body; if I could bear this all for him I would.
I write a note to our previous neighbor, the mama who lost her baby boy last week.
I hear the helicopter land on the roof above us and my heart drops into my stomach. Things are never good when your baby arrives at the hospital in a helicopter. Jesus, be near.
All of the beds in this NICU are full and my heart rages against this.
I walk through the lobby and see a dad pulling a red wagon carrying his little girl and her oxygen, eyes dark and skin pale. The world broken. Evil is so hateful, so cruel to take these most innocent ones.
Last week we again walked through the valley of the shadow of death, so close I tasted it, smelled it, touched it. We were at the end of what could be done and that conversation with the doctor that you have actual nightmares about. The thought that haunted me was how would I be able to leave his body in the room and walk away? And what do hospitals do with dead babies? How could I say goodbye for the last time? How could I ever let go?
We were spared that as tiny miracle after miracle quietly, discreetly crept in until hours had passed and then a day and then a week. The nurses still peek their head into our room with a smile and a “we’re so glad you’re still here!”
The only thing more exhausted than my emotions is my body. Utter exhaustion. My postpartum has been spent in the halls and rooms of two NICU’s. I demanded (nicely) to be released from the hospital, just 24 hours after an incision in my womb, because my baby was in a NICU on the other side of town. He had been earthside for 24 hours and I’d seen him 20 minutes.
People say I have to care for myself, but NICU moms know how silly this is. Of course my world is now this baby and all I can do is stand next to his bed. My back and neck will probably need chiropractic work for life from hunching over his bed all day, for weeks. My ankles and legs swell. I’ll sleep later.
I can’t look at Facebook or Instagram – all that filtered, effortless happiness. What a miracle to have a healthy baby. I’m stunned by it, almost incredulous. How does so much go right so often? How are all these people walking the earth and their hearts work so well? How is it that my heart works so well, beating, aching?
My lens of the world shifts and this is one of the gifts that suffering brings. Those who suffer are given a piercing awareness, an appreciation, an ability to more deeply absorb the good and beautiful in the world and to differentiate what is empty and meaningless. What may have been blurry before suddenly comes into sharp focus. When you’ve walked through the darkness of The Valley, the rest of the world is never the same.
It’s wild how suffering changes you, molds you, presses on you. I have scars on my body and the ones in my soul are still forming. I hold tight to those words I’ve read – the ones about the undoing of all the sad things, the reversing of all the broken things; about all the tears that will be wiped away. There are so many tears here. And so we wait and ache and hold on to hope.
tiny bird 