Mom is Just a Nickname

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.

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.

In The Red-Haired Girl From The Bog by Patricia Monaghan, she talks about the Cailleach, the ancient goddess known as the Hag. She says, “The logic seems impeccable: The Cailleach is old, therefore she will soon die. But this facile interpretation bears closer scrutiny, for what has age to do with death?” As she points out, people of all ages die. “But, what is natural about death is its inevitability, not its timing.”

This rang so true to me. Although I can’t help wearing a mother’s anger at being cheated of seeing my son live a long and full life, I can’t deny that death could visit any of us, at any time, for any reason. That’s the way things happen, and always have. Some could say it’s the natural order of things. The anger isn’t overwhelming, anymore, nor is the guilt or the horror or the sorrow about what happened to Sullivan. It continues to smolder inside though, rising to the surface when I am reminded of the past. When I’m feeling vulnerable and open, it is there and it takes over the way I think and feel about myself and about life in general. I usually think I’ve dealt with it all amazingly well, all things considered. And then I fall into the depths of all the feelings and have to claw my way back out again, and I wonder if I really have dealt with them at all. Maybe I just buried them, in that way at which I excel; buried, til a hole to the surface of my mind is opened and then they burst forth again.

Patricia Monaghan also provides the following which I found insightful and relevant to my life: “To move deiseal is to live rightly, to move in the order that nature intended. And nature’s order, as chaos theory reminds us, is not the rigid order of logic and theory. It is spontaneous and creative play, an intricate dance of unfolding possibilities.”

I find my life moving in ways I don’t understand. I wrote in high school, constantly. Everything from poetry to a novel (which I never finished). In college, I did some writing, but mostly for classes. Since becoming a mother, I have mostly written diary type entries and even then it was intermittent. It was not something I would do on a daily basis or with any regularity. I keep finding myself drawn back to it though. It’s the best way to express my feelings, the best way to work out how I feel about life. When I was troubled, I’d write. When memories of Sullivan overtake me, I write. When I’m feeling unsure, unstable, or unable to cope, I write. So I keep coming back to writing as something I love to do. It’s led me to believe I should be pursuing that as a profession.

In the same way, arts and crafts have been returning to my life. As a child and teenager, I was always doing something creative. From drawing to painting to sculpting clay to making things to wear, I did it all and loved it all. I continued to do things in college. Some of my best drawings come from my college days. Again since becoming a mother, my creative endeavors have lessened. I still do them, but they are more intermittent. A couple of years ago, I tried to start a business making jewelry. I loved making the jewelry, but it seemed so hard to juggle kids and jewelry and all the administrative details that go into running a business. And so it fell to the side. I still make jewelry, but not as often and it’s almost always for my own pleasure. That doesn’t explain why I have so few pieces that MATCH what I want to wear!

It seems like I keep coming back to the same things over and over throughout the years. Things I enjoy, and in which I believe I have some small talent.

And this brings me to the final quote that I’ve found personally relevant lately. It’s a quote from Calvin Coolidge which I ran into while reading Simple Abundance: A Daybook of Comfort and Joy by Sarah Ban Breathnach.

“Nothing in the world can take the place of Persistence.
Talent will not; nothing is more commonplace than unsuccessful men with talent.
Genius will not; unrewarded genius is almost a proverb.
Education alone will not; the world is full of educated derelicts.
Persistence and Determination alone are omnipotent.”

Persistence and Determination have been lacking in my creative efforts in the last ten years. I have been making efforts to change that lately. I’m becoming determined to do something creative with my life. The persistence takes more effort, I think. Being a stay at home mom, my schedule is very fluid. Although I could set myself a schedule to follow, be it for writing or housecleaning or playdates, it seems they always flounder and fail when I try. Maybe I had enough of scheduling and strict time tables during school and Sullivan’s life, I’m not sure. All I know for certain is that the rhythm of my day changes all the time. So scheduling in time to do any one thing becomes laughable. But I’m trying. I’m working at a regular rhythm, both in my creative life and in my mundane life of housework. If I’m persistent, it should fall into place, right?

hrm.