I was honored to be part of the On Coming Alive project in 2016. The following blog originally appeared here.
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I had always been afraid to hold babies. At family events, I dreaded the moment when someone inevitably asked, “Don’t you want to hold the baby?” I’d politely decline, feeling self-conscious about what they might think.
It wasn’t that I didn’t like babies. I adored them, but they seemed impossibly small— too precious to carry in my clumsy arms.
All that fear melted away the moment I held my firstborn, a boy named Owen. We formed an immediate bond I didn’t know I was capable of having. Over time, I learned to trust myself with him in my arms, and I began to settle into motherhood. I finally understood what an extraordinary privilege it is to cradle one’s own.
When my husband and I found out we were expecting our second child, another boy, I had a new sense of confidence. Babies were no longer scary, unfamiliar creatures. I was different. My heart had grown bigger.
At 25 weeks pregnant, a seemingly routine ultrasound revealed that my son would be born with severe congenital heart defects (CHD), along with Heterotaxy Syndrome. Essentially, his organs and veins were not pieced together like yours or mine. I was told he might die. But he might also live a full life. The uncertainty of it all was almost paralyzing. Instead of preparing a nursery, I was preparing for the worst.
Our son Miles was born February 17, 2014.
He was beautiful — perfect in my eyes. They whisked him away after he was delivered. I heard his cry from a distance as I lay stunned on the hospital bed, feeling like I was on the edge of a cliff but I couldn’t see how far I was about to fall. Miles was sicker than everyone anticipated.
At 35 weeks, his lungs were not fully mature, and that was on top of his other challenges. There was no time to cuddle or study his delicate features. There was only survival. Miles needed to be transported to the nearby children’s hospital without delay to fix his broken heart.
What took place next was a blur of hand-drawn diagrams of my son’s mangled anatomy, bleary-eyed conversations and droning machines that kept my son alive. It was touch and go, minute by minute.
After two open-heart surgeries, Miles’ tired body needed to rest. He was born on a Monday, and I held him for the first and last time the following Sunday.
It didn’t seem possible that time could march on after that excruciating day, but here I am two years later. With help from a counselor and my supportive partner, I’ve done my best to process the trauma I’ve experienced and to navigate life knowing my family will always have someone missing from it.
I’m certainly not an expert on grief, but I’ve learned it takes an enormous amount of courage to put one foot in front of the other, and to keep looking for the light. To come alive.
As much as my grief journey has been about death, it has also been about living more fully. In an effort to celebrate Miles’ life each year on his birthday, I created Shoes for Miles, a local shoe drive that makes a tangible difference in the lives of others while shedding light on congenital heart defects. It also helps me channel my grief into something positive during what is always a difficult time of year.
Much like I settled into motherhood, I have slowly begun to settle into grief, developing a unique set of aptitudes that comes with it.
I have greater strength in the face of life’s challenges knowing I’m still standing after profound loss. I have a better lens to cut through pretense and get to the real stuff. I find myself connecting with others more easily — feeling a greater capacity for empathy and gratitude. I have a new perspective — one that pulls me into the present whenever I start to dwell on the what-ifs and if-onlys, I give myself permission to be authentic, even if it makes others uncomfortable. If I want to talk about Miles, I will.
After all, we only have today.
To those who are hurting, take heart. You are stronger than you know.
Take heart; one day there be more smiles than tears.
Take heart; it is OK to ask for help.
Take heart; you will trust your instincts again.
Take heart; grief is not a problem — it is a path.
Take heart; you may never feel whole, but you are not broken.
Take heart; everyone is going through something and the only way out is through.
Eighteen months after Miles’ death, I gave birth to a heart-healthy baby girl named Iris. And although she has brought me immeasurable healing, it doesn’t mean that I’ve stopped loving and missing Miles. He will always be my son, even if other people forget or choose not to mention him. I carry him in my heart.
Ours is a love that never ends. It is alive. And so am I.
Take heart; sweet friend, you are doing your best. And that's enough.
Let love carry you, even if you feel impossibly small.
Everybody's got a hungry heart.