My heart goes out to parent's who've lost their sweet child.
He was thee biggest Spider-Man fan you would ever meet. It never got old for him and I'm sure as he grew up in the hospital, battling one or multiple illnesses after another, it allowed him to preserve his innocence. To live in fantasy. To feel like other kids back in school. Or because getting a new toy provided that instant joy and distraction his body and mind needed to fight. To find his happy. Everyone deserves to feel happy.
He died the evening after I sat in on an intimate, gut wrenching discussion with his parent and one of his primary physicians.
He was something else. He was mischievous. Like the times he convinced new volunteers they could take him on walks off the unit and to restricted play areas to him (he was required to be in isolation during his hospital stays to keep himself and other kids safe for infection control). He was relentless with his art, game and special requests (e.g. Can you write to Ellen? Can you email this comedian for xyz?) I would be lying if I said it was easy to manage all the time, but he was the most caring kid around and his bashful smile could melt your heart. He was creative, funny, and so considerate of other hospitalized kids and of course, his family.
In writing this, I simply wanted to share how powerful his life was and the impact he had on me for only knowing him for a short while. He taught me to have more patience, to use my resources, be creative, and to see beyond my own discomfort or minor illnesses and to think of others who might need help smiling that day much more than I do. Even in the midst of his own pain and sadness, he often did kind things for other young patients, staff and family.
It is impossible for me to see anything related to Spider-Man and not think of him. I started writing this post the day after my daughter found some Spider-man stickers tucked below a plastic craft table at a friend’s house. I smiled because of course those were the only stickers there and it reminded me of him. Two days later, a different dear friend posted her anniversary picture on Facebook and I couldn’t believe it. You see, I took a half day off from work to attend their intimate wedding. It also was the same day our ultimate Spider-Man fan died. I honestly didn't realize their anniversaries were approaching and found it so remarkable that this was the time I was called to write about him. I had goosebumps and was moved to tears. I was stunned and then gracious for what I felt was a sign from him.
I've learned a fear parents who've lost a child have is that others will eventually forget about the pain and heartache you experience daily. Or the fear that others will forget about your child’s legacy. If you are a parent who has lost a child, please know that I haven't forgotten. I hope you know this already, but if you haven't been told it, your child was special. Your child's life was important. Your child touched souls of people you barely knew. I know I can't take away your pain, but my hope is there is comfort or peace in knowing the impact your child had on others. Or at the very least, I hope my message sends you even the tiniest of cyber hug as your read this. I’m thinking of you and your family. And I am so sorry for your loss.