I Used to Live in a World Where I Wished Death Upon My Own Child

I can tell you the exact moment that I fell in love with my son.

It was two days after his first Christmas, and I peeked in at him before crawling into bed. He was lying there asleep on his belly, just like he had every night since the day we brought him home from the NICU when he was 5 weeks old seven months ago. I smiled and thought to myself, “I love him so much,” as chills ran over my skin. It was completely involuntary and totally in spite of myself.

Before that moment, I had never felt joy in Gabriel’s presence — only sadness, anger, fear and grief. I had held him so many times, my body wracked with sobs as I begged for God to take him home. I wanted Gabe to be free from his body and us to be free from a future burdened with caring for a profoundly disabled child. So many factors played into my inability to bond with Gabe, to love Gabe: the times we had said goodbye in anticipation of losing him in the NICU, the weeks without being able to hold him, feeding him through a tube instead of putting him to my breast, months without a smile or any sign of him knowing us and the overwhelming sense of him being broken. I was broken, too. He had broken me, and I him.

A world where you wish death upon your own child is a strange, foreign place to be, but I lived there for eight long months. Now, back among the land of the living, I feel no guilt over that province I once inhabited. Grief is a strange and complicated thing. It can make us feel and wish and pray for things that seem unimaginable. My eyes have opened and I understand pain, raw, dark and deep, in a way I never have before. For months, I felt like I couldn’t breathe. Only now, as I find myself in a place where my weary soul is finally finding rest, am I able to catch my breath.

Early in this journey, another mom of a child with special needs entered my life at the exact moment I needed her. Having navigated the same turbulent waters, she told me something that has continued to resonate with me since the moment it reached my ears:

For a long time, you will feel like you’re drowning. It will be dark and the waves will crash around you as you struggle to keep your head above water. You will grow wearier and wearier until you are certain you can no longer keep yourself afloat. Then, at that exact moment when you have surrendered, when you have taken that last gulp of air and sunken beneath the surface, succumbing to the ocean trying desperately to swallow you whole, you will feel the land beneath your feet.

I am so thankful to be able to say that I have found the shore. The waves are still crashing, but the sand is warm, and the sun is peaking over the horizon.

This post originally appeared on House Made Home.

 The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability or disease? If you’d like to participate, please send a blog post tocommunity@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.