As is my habit, I followed links to new blogs today. I found one, my semblance of Sanity, that held a story of a little boy who recently died of brain cancer. The mom of the little boy was a friend of the blogger (through the blogosphere? I assumed). I read his story, the mom’s words, the poetry…I had to stop. I had to physically get up from the computer and walk away.
The stories of these tiny children and their families fighting such impossible odds break my heart. Or a better way to say it may be that they take what’s left of my already broken heart and crush it into tinier pieces. Let’s face it, my heart was broken many moons ago when Sullivan died…the breaking started two years before that when he stopped breathing that cold December day and was resuscitated a different child.
I can’t help but read these stories. I can’t help but drop a note or a comment to the parents of these children. Nothing usually comes of it, but maybe they can see that they aren’t alone. Maybe they can see that their world will eventually mend itself around the hole left by their children’s absence. Maybe they just think I’m a nutcase stranger writing them out of the blue.
Maybe I do it just so I can pick at my own wounds and let them bleed awhile. The grief that other parents express is something I can relate to. I don’t display it every day, but I too have that deep well of sorrow that nothing ever heals. I try to live well because I feel that was what Sullivan tried to teach me throughout his time with us. To live well, to show our love, to share our experience. Still, too many days I exist, rather than live.
I feel even more deeply for the families that have lost a child after fighting a long illness. Coping with such a situation is the hardest thing I have ever done. We had months of living hour by hour, day by day, just surviving. We didn’t think too far ahead because the future was so uncertain. And day to day living was more about making sure our children’s needs were met than about being sure our own needs were met. We were exhausted, sick from not taking care of ourselves.
So, when we were saying our goodbyes to Sullivan, there was grief but also a sense of relief. A release, if you will, from the heavy toil and responsibility. And at the time, it seemed horribly selfish to admit to that. It felt like some sort of terrible betrayal to admit that I was glad that now that my son was dead, I could leave the “Waiting Place” and move on with life. I was thankful that I could again sleep all night long in my own bed, with my husband beside me.
It was release from a burden that I willingly carried, but release it was. I can hardly describe Sullivan as a burden either, for the joy he gave even on the last of his days was far greater than any difficulties he caused. To feel his tiny hands tangle in my hair to squeeze me back in a hug; oh to feel that again.
Xavier likes to play with my hair now. It reminds me of Sullivan. So many things remind me of him, but the stories that are told in memory or tribute to a child who has died, they bring so many of these feelings so close to the surface. So many days I end up lost in a funk because of reading these things….but I just can’t help but read them, time and again.
