Mom is Just a Nickname

At this time six years ago…I don’t normally use that phrase much at this time of year, even in my head, but the past few days my head’s been filled with it. “At this time, six years ago…” “I was hugging Sullivan good night for the last time.” “The phone rang and woke me up with news about Sullivan.” “I was choosing what to wear to go see my dead son, adamantly avoiding anything black.”

The day he died, I wore khaki pants and a white shirt. I consciously avoided wearing black. I didn’t think he’d appreciate any of us wearing such a dark, gloomy color. Six years later, we all make an effort to wear orange on October 1st. Orange for our Sullivan, who loved the color orange. Maybe it was the only color he could distinguish, but maybe he just liked the bright, vibrant color. Either way, we wear orange. Jillian wasn’t able to wear orange today, because it’s Wednesday. On Wednesdays, safety patrols have to wear their uniform (navy pants and white shirt), so instead, she fastened an orange ribbon on her shirt…we passed around orange ribbons at Sullivan’s memorial service for people to wear.

Orange. Such a lively color. Sully loved orange.

When I was twelve, if anyone had told me that I’d be pregnant in 8 more years, I might have laughed at them. Although I did have great aspirations to be a mother some day (there’s a reason friends called me ‘Momma Beth’) I really did not think it would happen in 8 years. Although 8 years then seemed an eternity away, still it seemed like 20 years old was too young for me to consider becoming a parent.

12+8=20 and there I was pregnant with my first child. Luckily, also happily married to a great guy with lots of love and support from both of our families.

At the age of 20, if anyone had told me that in 8 more years, I would have had two more children but also have lost one, I would not have believed anything that person had told me. Well, maybe having two more children in 8 years was realistic, but not losing one. The thought of losing a child was inconceivable to me then. I lived in a happy world, with a good life spreading out before me. It was not a life tinged with sadness or tragedy. I had such a blessed life, that I could only think “That can’t happen to me.”

At the age of 23, I had my second child. And five weeks later, he stopped breathing. And still the thought that tragedy could strike my family was not one that I felt applied to me. I still had hope that my second child would recover fully from his brush with death and go on to lead a long and fulfilling life. The doctors tried their hardest to put his future into realistic terms for us. The walls of my safe castle were crumbling, my world was no longer full of the bright colors of optimism and joy. Instead, a strong hand had brushed every thing I saw with gray, black and brown. I quickly came to realize my easy, blessed life was changing in horrifying ways. Thinking 8 years ahead then was not an option. It was all I could do to survive, day by day, hour by hour. The future was not mine to dream about.

At the age of 25, the question of Sullivan’s future was answered. He died. He had no future in this life, beyond that of our memories. I became intimately aware that “IT” could happen to anyone, anywhere, without rhyme or reason. As the days and months passed after his death, I began to see a future ahead again. Each day that passed painted a new kaleidoscope of colors in front of me. The world still held grays, blacks and browns, but they became balanced by the endless shades of other possibilities. At the age of 25, I had no idea what my future held. But I wanted another child. Eight years ahead seemed far distant still.

I’m 31 now. I’m still looking forward into the murky future, trying to resolve the whirling mix of colors into some order that makes sense. I’m still trying to find my own path to the future, while realizing that every day lays a new stone on the path to that future. I don’t know what the next 8 years hold for me or for my family. I hope, I pray, that my two children will continue growing and maturing into the next 8 years. In 8 years, J will be 18 and moving out into the great world beyond, hopefully filled with all the hope and optimism an 18 year old should have. In 8 years, X will be 12 and my hope is that he will still have that boundless energy and curiousity that he was now.

But now, looking back 8 years, I see so many twists and turns in the path. It’s hard to believe that almost 8 years ago, I gave birth to my second child…thinking I was giving him into the world to love and nurture to adulthood. It’s hard to believe that six years ago, I said goodbye to that boy. Instead of raising him to adulthood, I watched him soar to the heavens.

Sometimes, when I see a picture of my family now, there’s a shadow figure standing there beside us. A boy with curly light brown hair and bright blue eyes lit with the mischief most 8 year old boys seem to share. He’s tall for his age, and strong. He’s there with us, always, even if only in my head. I wonder what he’d be like now, if he had never stopped breathing that cold December day. And then I wonder what he’d be like now, if he had stopped breathing…but then hadn’t died two years later.

8 years…it’s amazing what a difference 8 years can make.

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.

The Fiction Class
By Susan Breen

“You’ve known there was something special about you for a long time, haven’t you?”

With those words, Susan Breen drew me into the story of Arabella Hicks. I read the first half of the book little by little, absorbing the writing advice being given as Arabella teaches her class. I found Arabella a bit awkward, stiff and perhaps formal, and I was uncomfortable with how much I related to her character for those reasons. (Who likes to be reminded of their faults?) About midway through, I set the book down for a few weeks, unable to give it my full attention.

Then questions about what happened in the story drew me back: What happened between Arabella and her bitter mother? Did Arabella find a way to connect with her students? Did Arabella ever finish the novel she had started? Did Arabella grow out of her awkwardness – in other words, is there hope for me yet?

I returned to the book, beginning where I had left off. The three parts of the story (the fiction class, the visits with her mother, and the story her mother had written) wove themselves into a beautiful whole that hooked me in completely the second time I picked up the book. I found the writing prompts at the end of each chapter allowed me to go through the class along with her students, so that I became more of a participant in the class.

As amusing, and even educational, as Arabella’s fiction class was, the part that moved me, the part that really reached down to the core of me, was the relationship between Arabella and her mother. I know the desire to please a parent who seems difficult to please. [Disclaimer here: I do not have such a difficult relationship with either of my parents. In fact, I think my parents are wonderful. But I still find myself doing things which I hope will please them...and sometimes being disappointed by the lack of response my efforts draw.] I also know the guilt of putting a loved one in a nursing home: Our son, Sullivan, was in a Hospice Home when he passed away. The decision to turn to the Hospice Home for respite care was a difficult one, and at the same time we made it, we began discussing the options for a long term care facility. It’s not an easy decision, be it for a parent or a child.

The Fiction Class was a good read, but not always an easy one. Perhaps because it did speak so well to parts of me that I don’t always want to face, I found it harder to read than another might. I appreciated the new ways Ms. Breen offered for looking at things, from writing, to the relationships in my life. I think that marks an excellent book, when I enjoy it and learn a new perspective at the same time. This book will be on my shelf to reread many times in the future. I suspect I will find yet more new perspectives during those future readings.

This book review has been made possible by Blog Stop Book Tours. Clicking on the link will provide more information about the author, the book, and other reviews that have been written about this book.

Very few books, movies or anything make me cry. There is one topic -death and family responding to death – that will always make me cry.

When I was a teenager, I had yet to find a movie that would make me cry. Then, one day, I watched My Girl. The movie where the little boy dies from bee stings? (sorry if I just ruined it for you…it’s such an old movie, I figure most have seen it by now!) That one made me sob hysterically. Looking back, it almost seems prophetic that the one movie I’d seen that triggered a powerful emotional response was one in which a family and their friends must handle the death of a child.

Yesterday, I read a book called Necessary Arrangementsby Tanya Michna. Basically it juxtaposes the stories of two close and loving sisters. One is getting married, and one has cancer. I literally cried through the entire book. I found it poignant, realistic, and heartbreaking while still being uplifting at the end.

“Don’t let them give up family traditions. If they stop doing the stuff we all did together, if–”

If the customs the four of them had shared disappeared, it would be as if Asia had disappeared. Not just from their active lives, but from their shared memories, their collective love for her. No, they’d always love her, but it was disconcerting to think that one day they might possibly get used to being without her.

Paragraphs like that run throughout the book. They bring to mind the things that have plagued my mind since Sullivan’s death. Sadness that he’d be forgotten, hurt that lives would, could and should move on away from his life, and the ways that relationships change in the wake of a death.

Although I have not lost an immediate family member to cancer, I can relate with the long, drawn out fight, with the constant medical attention, with the array of emotions present, and with the decision that must be made between treating a fatal illness in order to buy more time or treating the symptoms to make the time available worth living. I can relate to the feelings of the family facing the loss of a loved one. So many of the things in the book were from different perspectives than I’ve experienced, but I could so easily step into their shoes and feel what they were going through.

Between the excellent flow of the writing, and my own experiences with prolonged illness and death, this book struck a very deep chord with me.