“There was a lot of pain, not suffering, since suffering is a choice”
I’d like to thank you for publishing the account of Shifra Wagner’s heroic struggle to raise her medically fragile child at home, and the subsequent letter from the mother whose medically fragile child lives in a skilled nursing facility, highlighting that there is more than one shade to this heroism, as she eloquently pointed out. As a fellow mom in the trenches, whose medically fragile child does live at home, I was happy to see a discussion of my reality on these pages, but wanted to add another layer of nuance.
After reading the original article, I took my “emotional pulse,” trying to figure out why I was left with a niggling feeling of unease. It didn’t take long to figure it out; it was the glaring difference between the way Shifra lovingly talks about her son, and the more dispassionate way I relate to my child.
I called up a friend, another superhero mom, and asked her if she thought there were no other mothers like me. When she reassured me there certainly are, I ruefully remarked that I guess those aren’t the ones profiled in articles.
So to any other mothers like me out there, keeping children alive in your home but finding that the natural maternal love you may feel for your other kids is blocked when it comes to the one you need to suction and tube-feed and provide airway clearance for, here’s what I wish someone would tell me: That you’re a heroine for doing what you’re doing, that the amount of emotional stress you deal with every single day would have long crushed a lesser woman, and that while your survival mechanism may take the form of a giant step back, and a dispassionate, cool relationship with the child you call your own, there’s no greater statement of love than the fact that you actively partner with Hashem in keeping your child alive to accomplish his or her silent mission in This World.
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