Grieving mother’s insights: ‘I honor him by staying alive, making him proud’

Sawyer was just shy of his 8th birthday when he passed. He was born with Joubert Syndrome, a genetic condition that caused global delays for him.

My son, Sawyer, passed away on Nov. 25, 2018, after battling Joubert Syndrome his entire life. When people would ask how I was really doing while he was on hospice care I would tell them that it was like holding a grenade that you knew at some point would explode. I was right.

People ask me a new question now. That question comes in many forms – sometimes they just ask it, other times it is their face that forms the question or its how they treat me that begs the question, “How do you do it?”

Here is the answer, the truth – raw and real. I don’t know. I thought I would die mentally when he did. Some part of who I was with him did. However, what they really want to know is: how do I still get up every day, find joy, purpose, even laughter? That is a much simpler answer, because I want his life and his death to mean something – for his life to have a legacy beyond one more loss. Sawyer wants me to. Your child wants you to. They want us to live beyond their death because what was the point of them living if it only meant we would throw the rest of our life away because they went before us?

Joubert Syndrome was something he had; it wasn’t who he is. He loved M&M’s, chips, the wind on his face, Tom Petty music, but, most of all, his people.

I physically choose every day to stay alive. Every day to make a choice he would be proud of. I honor him by staying alive.

It isn’t easy, but I manage in the painful soul obliterating moments of loss by looking for Sawyer signs. Anything from a butterfly to a Tom Petty song on the radio reminds me he lived and he wants me to live now. I talk about him when I see those signs. My family and friends keep him present by sharing things that remind them of him, and I appreciate that they do. I say his nicknames. I touch his things. I smell his shampoo.

Sawyer was completely nonverbal, however, he would communicate so much through his expressions. He LOVED to laugh. It was my most favorite of his sounds.

If you are a parent whose child has passed, or someone who cares about a parent whose child has passed, I encourage you to talk about that child. As a parent, I can assure you that we are always aware of their physical absence, so you are not reminding us that they passed but allowing us to remember the joy that they lived. That they were here and that the love that our child brought into this life is ongoing. Send us pictures you find of our child. Text us about a silly story you remember with our child. Do random acts of kindness in our child’s honor. Tell your kids about our child every chance you get. Even tell us when you hurt because you miss them too. We want to know. It helps us.

The biggest thing to know about him is that he fought hard to give us the time we got with him and that he changed everyone involved in his life for the better.

Editor’s note: Kat has been working with the hospital’s Narrative Medicine Coordinator Nicole Robinson, of Emily Cooper Welty Expressive Therapy Center, to use writing as a tool to assist her journey through bereavement.