When Ethan passed, I sent a lock of my braided hair with him. I couldn’t stand the thought of him being alone even for a moment, so I sent a piece of myself with him to heaven. I wished so desperately that I could take his place, and let him live, but no amount of begging or bargaining could change our fates. The missing hair began to serve as a reminder of how recent Ethan’s passing was, reminding me to go easy on myself when I wondered, “why am I struggling?” Measuring emotional recovery is such a tricky thing, even for the person experiencing it. It can’t be seen or touched, x-rayed or scanned. It can only be felt, but it’s a slippery fish. One day, you feel like you have a handle on it and the next it’s wriggled out of your hands. As that lock of hair grows in, it’s a tangible reminder of how slowly our physical body takes to heal and recover and so too our emotional body. At two years, that lock is just past my shoulder and I’m not sure I ever want it to catch up with the rest of my hair.
Ethan’s Wish is a place to share the wishes that our children inspire in us. If Ethan could talk, he would say that his sole wish is for no child ever to suffer from Tay-Sachs again. As his family, it is our wish that no other family should suffer the heartbreak we have endured, knowing that his condition is preventable. Add your comments below or share your story of how your affected children inspire you here.
I'm Ethan's mom and founder of TSAPO.
Michelle's dear friend, Kay, edits Ethan's Wish with kindness, compassion, and beautiful writing.