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The Words That Don't Help Me as a Grieving Mother

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On August 13, 2015, I went into labor with my second child. At 4:08 a.m. on August 14, 2015, my world was turned upside-down because as quickly as our son, Trevor, came into the world, he was fighting to stay there. He stopped breathing, and before I knew it, an entire squad of medical personnel descended into my room. I couldn’t breathe. Trevor was whisked away to the NICU before I could figure out what was happening. At the same time, I began to hemorrhage and my mother was not only worried about losing a grandchild, she was worried she might lose me, too.

Those first few hours were agony, not knowing what was going on and not being able to see and hold my child. Finally, a couple of hours later, I was able to see him and all of the cords and tubes that were keeping him alive. Hours turned into a couple of days and still no answers.

We did know that Trevor wasn’t able to move, breathe on his own or swallow and therefore had to be tube fed. I walked around desperately searching for any hope and any treatment options.

Trevor was transferred to another hospital that specialized in children, and there were still no definitive answers. We watched our son’s body shake when we held him because he was in pain and would have been crying if it weren’t for the tubes in this throat. His numbers indicated he was in pain when we would touch him. It was my own personal hell.

Then we heard news that Trevor wouldn’t make it. Our main goal for him was to be free of pain, and that meant we had to let our beautiful baby go. For the first time, I was able to hold him without fear of unplugging cords. I was able to rock him, hold him and sing to him. My husband and I held Trevor until his heart stopped beating and the last breath left his lungs. At that moment, my world turned upside-down and everything felt foreign.

A couple of months after Trevor passed, we found out he had a rare disorder called nemaline myopathy. Nemaline myopathy is a genetic neuromuscular disorder, which affects children and adults’ abilities to walk, talk, eat and breathe.

Since losing Trevor, I’ve heard comments I think no one should ever say to a grieving parent. I’ll let everyone in on a little secret I’ve come to believe: You can’t make a parent who just lost their child feel better with words. There is no silver lining to losing your child. There is no “There is a reason for everything” or “This will make you a strong person.” I didn’t think I was strong and nor did I care if I was strong if I could trade that for more time with my son. Despite what people think, there isn’t always a reason for everything. Sometimes things just happen.

I have heard from many that they can’t imagine losing a child. It’s a phrase that makes me thankful. I’m thankful you never have to know that deep agony and pain. You don’t want to be sitting next to me feeling what I’m feeling. The pain of losing a child is indescribable.

Grief is a never-ending process. I’ll never be able to move through my grief because grief moves me. I can and am learning how to manage my grief. The learning process is one that has held many hurdles, and I’m constantly falling, but I’m also standing back up and bracing for the next wave.

I can see that grief is intertwined with love because the grief is a result of the love I have for Trevor and is never-ending. Therefore, I will grieve for him until I leave this world and reunite with him.

Sarah Smith with her son, Trevor
Sarah and her son, Trevor.
Originally published: April 18, 2016
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