Mom is Just a Nickname

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.

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.

What is it, seriously?

Is it sharing the bounty of the season with those less fortunate, a la Scrooge?

Is it the anticipation of waiting for Christmas morning, so you can open all of the “loot” (my husband’s word for gifts)?

Is it the wonder of seeing the sparkling lights on the tree or decorated houses?

Is it the fun and joy of having family together, of recalling old memories and making new ones?

Well, I suppose it’s all of those things and more. I used to get alot more excited by Christmas. Even after I had kids, I wanted to make it as great for them as I remembered my childhood Christmases. I think my excitement about Christmas has become dulled since 2000, when Sullivan was hospitalized.

It truly was a Blessed Christmas in many ways. We found more joy in small things, we found more hope and compassion in strangers, and we found more love from family and friends than we knew existed. Still, the realization that our newborn baby was in the PICU, fighting for his life, dampened the excitement.

And today, the memories of those days in 2000 continue to make the holidays less than magical for me. The Christmas season, and even New Year’s afterwards, continue the months’ long time of anniversaries for me. Not good anniversaries, although there are surely some good things happening between October and New Year’s. There are birthdays and wedding anniversaries that we celebrate for those that are still with us. There seem to be far more days of sadness to remember in that time though: October 1st (the day Sullivan died), November 7th (Sullivan’s birthday), December 14th (the day Sullivan had his near-miss SIDS incident).

There aren’t actually more days of mourning in that time. There are more birthdays and holidays and days that we should be smiling and enjoying ourselves. But it’s the ANTICIPATION of these days of sad memories, it’s the way they dredge up all of the hardest emotions. It’s the way all of these feelings simmer in my head, combined with the way the sunlight is fading with winter’s approach; it’s the way even the good holidays are tainted by how we celebrated during Sullivan’s life and how the celebrations feel so empty without our second child here with us to enjoy them.

When we had Sullivan, we looked forward to the joy of raising two kids so close in age. We wanted it that way. They were two years and two weeks apart, on the dot. And Jillian loved having a baby brother. We were joyful and thankful for our baby son.

Now, we have two children to raise. They are five years apart. Instead of having a beautiful daughter and two mischevious sons, our family portrait (if we were to take one) would be missing one child. We can never take a family picture with our whole family. Every time we do take one, we look at it and wonder where Sullivan would be. Every time we have friends born around the same time he was born, we wonder where he would be developmentally, or how tall he might be, or who his friends might be. If he were still alive.

And so it is at the holidays. When we sit down to open gifts in the morning, I think of how much more chaotic and … joyful … it would be if we had all three of our children with us to celebrate. And when we see family newsletters come in, and no one ever says a word about our Sullivan anymore….to the family, I’m not a mother of three. I’m a mother of two. I have two children, not three, when they introduce me to friends. And somehow it seems like they’ve forgotten our Sullivan, although I know that is not their intent.

So, the holidays have lost their glamour. I go through the motions to meet my children’s expectations. I go through the motions to please my family. Really, though, the holidays just make me realize again that I have a great gaping, bleeding hole in my life and my heart and I fear it will never heal.

About the anniversaries, I’ve always said that the anticipation is often worse than the day itself. I had almost forgotten what day today was until I saw the date on my previous post. December 14th. How could I forget?

On December 14th, seven years ago, my son Sullivan’s life changed forever, along with my own and the rest of our families’ lives. On December 14th, 2000, Sullivan experienced his “near miss SIDS” incident and began the journey that led eventually to his death in 2002. On December 14th, 2000, the little baby I was coming to know and love died, and a new baby was put in his place. The new baby, although I loved him too, was very different from the one I’d given birth to. He needed more care, more medical attention. He was perfectly Sullivan, whether before or after his incident, but I still wonder what he would be like today if he hadn’t experienced that incident.

What ifs and might have beens can break the heart if we dwell on them too long. I’ve got too much to do, and am too close to the bottom of my barrel to allow myself to wallow in them today. But I never forget. We love you still, Sullivan. We love you in all the many forms you came to us, from newborn baby to the almost two year old who could finally fight no more. You showed us love and strength, and brought out the best in so many of us. You renewed hope for some. You inspired many and continue to do so today. I’m so thankful I had the chance to know you, to love you, and to care for you for so long.

You can read my version of what happened to Sullivan on Dec. 14th 2000 at this site or more information about his life at his site, which sadly hasn’t really been updated since his death.