I couldn’t be more thankful to Rebecca Chappell, whom I’ve (unfortunately) had the pleasure to get to know over the last year through the National Tay-Sachs and Allied Diseases Association, for sharing her story of Symbolic Mourning after the loss of her beautiful and precious Colby earlier this year.

When my son died, his absence felt almost tangible. There is of course the absence of his physical presence, but because of his special needs there was also the absence of the machines and the people that helped us provide the extra care that made his life possible. Colby was diagnosed at eight months with Canavan, a degenerative neurological disease, where he would never develop skills beyond that of a 2 month old. In addition to always having the needs of a newborn, he also needed a suction machine to clear his airways, a stander to prevent problems to his muscles and joints that would come from not being able to stand and walk, special chairs that held up his head and kept him from falling sideways, a nebulizer that helped him breathe. He required constant attention.

While the reality of having people and machines in my home and the constant demand of a completely dependent child were not something I would have chosen, they had become my way of life. Now that they were all gone, the house was empty and my life had changed overnight. I felt lonely and without purpose. My arms that had constantly held Colby were now empty and the pictures from his life didn’t feel like enough to fill such an enormous void. I wanted to scream at people when they asked how I was doing, “my son just died, how do you think I am doing?”  I also felt offended when people didn’t ask or didn’t know. I began to feel that I needed some way to remember him, to share him, to literally mark myself as the mother of an angel.

As I struggled with feelings of grief that I didn’t know how to express, I realized that what I needed was to “mourn” my son. In years past people would go into “mourning” after the death of a loved one. They would follow social conventions of the time, including wearing black for a designated period. This allowed the person that had lost a loved one to express their grief, but also let others know so they could offer condolences.  Today most people don’t wear black or even have a time set aside to mourn. It left me feeling like life is just supposed to go “back to normal”, which of course it never would for me. Every time I left the house or did “normal” things I felt like I was betraying Colby’s memory. A part of me died with my son and I could not return to life as if he had never existed. I decided what I needed was a symbol of my grief, a symbol that I was in mourning.

I wanted something to represent my grief, to remind me of the special bond between Colby and I and give me the opportunity to talk about my son all at the same time.  My first thought was a tattoo, but depending on where it is placed it wouldn’t be as visual as I had in mind. Some people are able to wear or carry something that belonged to their loved one, but Colby didn’t have a lot of things that could be used for this purpose. I also researched different types of jewelry but nothing really fit my image of what I wanted. So I decided to put together my own bracelet, which itself ended up being a therapeutic process. I wanted it to be mainly black as a traditional representation of mourning, so I purchased some black beads and a black ribbon to string them all. Next I found charms that would remind me of him; a heart, a prayer charm, a dragonfly, the first letter of his name, his birthstone, and finally a tiny frame for his photo.

Creating my mourning bracelet has had the desired effect for me. I am proud to wear it. It is my outward symbol that while my life may have changed, Colby is not forgotten. The beads softly click together as I move my arm, quietly paying tribute to my angel son as I go about my day. More than one person has mention that it is beautiful, and one mother, who had also lost a child, even said she would buy one from me it I wanted to start making them. The void he left is still enormous but the heavy feeling that I am not doing enough to remember him has been lifted and no matter where I am I can look down on my wrist and see him smiling back up at me.