One of my friends, who died many years ago, had a daughter who had a very rare health condition. It was so unique, she was the only person known to have it at the time. My friend, who we’ll call Sally, talked about the struggles of dealing with such a rare condition.
Firstly, since the condition was unknown it was hard to come up with a treatment plan. Everything was trial and error, her daughter was both a guinea pig and a trailblazer.
Secondly, Sally was told that every day her daughter lived was a miracle because she could die at any moment.
Living in that state, day after day is physically and mentally exhausting. I know because I lived that way after my son, Caleb was diagnosed. He also has a rare genetic disorder that was relatively new to the medical community at the time. In fact, everything that is known about his condition is a result of our family support group’s participation in medical studies through the years.
My greatest fear
But when we received Caleb’s diagnosis many years ago, not much was known. Naturally, the first question my husband asked was about life expectancy. At the time, the oldest living person known to have the syndrome was 25 years old, unfortunately, they passed away a few months later. This meant no one with the syndrome lived beyond their mid twenties (this is no longer the case).
As a new mom, hearing that terrified me. I couldn’t bear the thought of losing Caleb. I loved him so much, I didn’t want to think about life without him. So I spent many days just holding him and crying, afraid of losing him. Afraid if I let him go he would be gone forever but if I held him close, shielded in my arms I could somehow keep death at bay.
Every day, it was a fight to keep my emotions in check. Everything I did brought a fresh assault of tears. Playtime. Story time. Singing lullabies. Everything was tinged with sadness and there was nowhere I could go to escape the tears. It was a terrible time.
The gentle reminder
Then one day, I was gently reminded that Caleb was alive, so what was I crying about? Why on earth was I digging a grave for the living? Because that’s what I was doing when I was mourning him while he’s alive.
Not only was it a waste of my tears but I was making my life miserable, not to mention how it was affecting Caleb’s. He didn’t need to see his mom crying all the time. What was I teaching him?
The truth was, Caleb was alive and living. So why treat him like he just died? I’ve been given this moment to enjoy his life, not mourn the eventuality of his death. I needed to take advantage of this time, enjoy the moment, make memories, and savor the days I have with him. Nobody, but God knows how long he will live. But when that day comes, God will give me the strength to get through it, until then I needed to stop digging graves for the living.
In that instant, the whole weight (that I didn’t know I was carrying) lifted off my shoulders and I realized how unhealthy it was to cry about a future that hadn’t happened yet.
Sally’s story
It’s not like the fear went away, it’s just tucked away in the back of my mind but it doesn’t torment me. Although, it pops up with every surgery, every illness, and every specialist visit. For Sally this was her normal, she was confronted with her daughter’s death on a daily basis. But she choose not to let that get in the way of enjoying life, being focused on today, and not digging graves for the living. Sally was a remarkable mom and I’m so thankful I got to know her.