Emily’s House is a new children’s palliative care facility in Toronto. I have been tracking with Emily and her mom through their blog for a long time. Emily has a rare, fatal neuro-degenerative disease called MLD. She has lived long past expectations in no small part due to the courageous, loving, nurturing care of her mother, Lindsey. In any event, as I have read Emily and Lindsey’s blog, I have become better acquainted with the concept of peace and oddly, even joy, in suffering.
Among other services, Emily’s House in Toronto provides 24/7 nursing care, “play therapy,” a place for family members to sleep and the services of a chaplain. Family or staff have even brought in cakes for baby Stephanie, lit candles and marked milestones that may never be. “We celebrate her birthday every month, because for us it’s a miracle that she’s still alive,” said Cherry, her mother. “It’s a great experience that we are here. It’s amazing.”
Once I get beyond the terrible grief and sadness it must be for parents to hold a baby who is palliative, I do stand in awe of these tiny, resilient souls.
It’s the Christmas season. This means that if you are experiencing any grief or sadness, the blaring of “It’s the most wonderful time…of the year!” in the grocery store is going to be all the more annoying.
But joy is to be found even in darkness and that is why I liked this article.by