Updated: Jul 7, 2020
For parents who have a child with a diagnosis that involves potential terminal complications or a straight-out shorter life expectancy, the words we hear on Ash Wednesday aren’t that revolutionary. “Remember you are dust, and to dust you shall return.” I know.
From the beginning I’ve known that SJIA, the diagnosis of our daughter Cee, has the same mortality rate as childhood leukemia. I might only have one more year with Cee. I might only have two more years with Cee. Certainly I hope for seventy more years, but who knows the reality? Not me. I can’t afford to waste time. That’s precisely what makes me lucky, this ongoing reminder. I *know* I can’t afford to choose selfish things over spending time with my kids. I understand the importance of keeping the eternal when my daughter goes to the hospital for an infusion that lists “death” as a possible side effect. It’s like a mini Ash Wednesday for me every month.
“Remember you are dust, and to dust you shall return,” we hear a hundred times as we wait in line to be marked with a symbol of that truth. For us special needs parents, the lesson might be different than just remembering our personal mortality. It’s easy to get caught up in the worry about what might be. About how much pain my daughter might face in the future. About how much losing her would hurt. It’s a battle to keep those fears from preventing me from being joyful about the time we do have. It’s tempting to live under a gray cloud, always feeling sorry for myself for the health issues of my daughter. Always worrying about the next flare up, the next hospitalization, the next cold virus that could turn to pneumonia. Ash Wednesday reminds me that we are all mortal. Whether or not our children battle life-threatening diagnoses, face shorter life expectancies, or are immuno-compromised, we will all one day leave this world. I will not add a day to my daughter’s life with worry, fear, or anxiety.
This year more than ever, I accept that reality. I am going to die. So are my children, special needs or not. I’m not going to spend time and energy on what doesn’t matter. I’m also going to work hard to not let fear rule our time together. I don’t exactly know how that will look moving forward. Probably some more staycations and Yes Days. Hopefully less yelling and raising my voice. And lots of poop jokes. (My son Moe is six, so the punchline of every joke is pretty much “poop.”) I had Cee write the words from Ash Wednesday on a bit of poster paper so I can see them all throughout Lent. Her kid spelling is adorable.
Yes. I am dust. And I will do my best to live every day I’m given to the fullest.
Alisha Schonhardt is a wife and mother to five. She blogs at 'Sweeping Up Joy' where this post originally appeared.