I find that when I don’t write for several days I have a tendency to wake-up with a nameless energy that feels like anxiety, or panic. That has been one of the reasons I’ve wanted to write my whole life (literally and figuratively). Two nights ago we (my husband, sixteen-year-old son, and I) spent a while looking at photos of Daniel when he could still walk, run, climb, and seemed just like any other kid. (except that he got sick pretty often) Moms of kids with A-T live on a razor’s edge of hope. We are the ones (usually) who provide the treatments they hate (at least in my case – because Dan has no IgM his respiratory needs are many), stay with them in the hospital, and try to help them make sense of what is happening with their bodies. It’s not an easy job, and I tend to think of us as warriors. That doesn’t mean we don’t break down occasionally, but we also develop an inner core of resilience. We walk in the shoes of other mother’s when they lose their A-T kids, because each one feels like our own. We’ve seen the limits of medical science, struggled with our feelings about stem cell research and other potential “cures” or treatments, and spent more time on our knees or in hospital chapels praying than anyone I can think of other than monastics.
What we never lose is our love for our kids. They enlarge our hearts, challenge our spirituality (because they seem to have an innate spirituality of their own), and break down any walls we might have from our “pre-A-T” lives. While watching my son’s suffering is never easy, I wouldn’t give up the experience of knowing him, of loving him, of having the privilege of being a part of his daily life, for anything. I’ve spent countless hours blaming myself for his condition (it hasn’t helped), kicking myself for not picking up on warning signs of impending infections (although this has gotten less frequent), and realized that none of that is as important as cherishing every moment he and I have together. My Daniel is, indeed, in a lion’s den; but he has me by his side, along with his Step-Dad, Father, Grandparents, brother and sisters to help us. The lion may win in the end, but it is Aslan, whose claws are always drawn in, and the spirit of life in every living thing that brings my son joy and the strength he needs to fight. (for now).
Today my heart is with all the A-T Moms who have lost their children, most recently, Pamela Skyberg Digby, who lost her son Jared less than a month ago. May we all find strength for this journey, and may Jesus or Jizo (guardian or travelers and children) guard and protect our children as we go day to day together, thankful for each moment.