If you’ve read this blog for any length of time, you’ve read something of our son, Sullivan. The anniversary of his death is looming once more, and the anticipation of it is building. Somehow, the day itself will be anticlimatic, but perhaps that’s as it should be. His death was anticlimatic in many ways.
We went through nearly two years of drama during his lifetime. First his near miss SIDS incident, a month in the hospital with him, fighting insurance companies and government agencies trying to get the care he needed, that we needed in order to live.
(I’m still frustrated by all of the refusals I heard in that time. Did you know that a pair of people are supposed to be able to care for a medically fragile infant 24/7 while one holds a full time job and the other also has a 2 year old to nurture, without any help whatsoever? The insurance company was KIND ENOUGH to grant us weekly home visits from a nurse to be monitor Sullivan’s health. But no respite care was authorized until we turned to Hospice. Thank goodness for family and friends willing to give of themselves to make our lives bearable.)
I find I’m often sad, bitter, even angry about things that happened during Sullivan’s life. The sadness is sort of ever present, although it’s tinged with a gratefulness that I was given nearly two years to know and love Sullivan. But the bitterness, the anger, the rage, they are not balanced by much of anything. They are simply a whirlpool of nasty feelings about the companies and people who did not seem to hold a compassionate place in their hearts. A tiny family of four was struggling to maintain itself on a number of levels and all they saw was a child who was not expected to live and so did not deserve their help. How heartless.
Would his life have been different if his care had been different? Did the insurance company or the doctors limit his potential with their beliefs that he would not live? I’m sure I’ll never know.
But after all of that fighting for every thing we could provide for him, when it actually came time to say goodbye to him, it felt surprisingly undramatic. It was matter of fact, it was full of grief and mourning, definitely. But it was not wholly unexpected, it was not shocking, although it was surreal.
On the day of his death, I was confused. I had no desire to weep and wail as I have heard some people do. I felt more pressure to act the ‘right’ way for others, but yet I had no idea what the ‘right way’ actually was. As I did when the incident first happened, I settled stiffly into a pattern of getting done what needed getting done. And when there was nothing that needed to be done, I wandered aimlessly. I wandered a candle shop for at least an hour, searching for a candle or holder that would adequately honor my son’s memory. The one I found suited the day, with its stained glass autumn leaves and its strong metal trunk. It was a reminder that ever life has seasons and the seasons change. It reminded me that the tree of Sullivan’s life had passed on to the next phase, whatever that may be.
I’ve been told, and come to believe, that Sullivan was a very old soul. He had a way about him, a charm that glittered in his bright blue eyes. The charisma he carried could reach out to the hardest of hearts and grab their attention…and often their love. Something in him called out to others, sharing compassion, hope and wisdom.
But when I think of those blue eyes, so similar to his father’s and to the little brother he never met, I know I saw more than that. I saw a recognition, a soul-deep knowledge that he was surrounded by love and family. Despite being told that he was cortically blind, it became clear that he could see SOMETHING. And when those eyes stared at me, I knew that something in the vague shape he could likely see, spoke to him of love, comfort and care. Something in that fuzzy shape he might have seen, spoke of MOMMY for him. Despite not being able to hear very well, perhaps some unique tone in my voice conveyed that he meant the world to me. And perhaps, in the end, he did what he could to make sure that his mommy would find the strength to go on after he was gone. His fingers curling into my hair to hug me back, his lunging for me the last time I passed him onto his daddy, the way those eyes watched me the last day….it was so lacking in drama, we had every hope that we’d see him alive again the next day.
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At this time 6 years ago, we were fully expecting years with our son still. And when September 30th came, six years ago, although we worried that he was ready to let go, we assured him it was ok to die, still we never expected to be saying goodbye for the last time.
