I haven’t gone to the car and cried in a long time, but this case was especially hard.
I recently met Kimberly Skeers and her 6-year-old son Nicolas, who suffers from a genetic disorder that left him devoid of a skeletal structure to support him and almost no functionality. He doesn’t talk or walk. He’s responsive though: I got on the floor to play with him (as a grandpa, that’s what I do). I was teasing and tickling him ever so gently and he did give me a little glimpse of a smile.
A doctor friend of mine said it gets easier to handle over time and he’s right. Over the 10 years that I’ve visited desperate families of sick and dying children, I’ve seen a lot of difficult cases that were unimaginable to me as a parent and grandparent. I’ve met children who didn’t have much time and parents struggling to find the balance between covering basic needs and spending every last waking moment with that child. Sometimes they’re able to make happy memories they can keep and treasure after they’re gone. Sometimes they do what they can to just ease the pain or get through the day handling the logistics of caring for a severely disabled child. I honestly don’t know how they do it, but as one mom told me recently, “When it’s your kid, you just do it. You don’t have time to feel sorry for yourself.”
The fact that she can still smile through it all made me admire Kimberly and her love and devotion for her son. But at the same time I could feel the weight of her burden and I hoped that, for her, some days are easier than others.
Jerry Caruso is the founder and chair of Caruso Family Charities in Lakewood, Colorado. Their mission is to bring financial relief to parents struggling to care for children with cancer and other life-threatening or life-altering diseases.