There Are Places I Remember...

[written for the Racine/Kenosha WI Compassionate Friends March, 2011 newsletter]

For months after Rachel's death Diana and I would avoid driving anywhere near the children's hospital where she'd died. The pain was so intense. The fact that the hospital was in a large urban center we often had to drive through made travel a bit comical at times diverting five miles out of the way. Ten years later I can smile at that man who drove so far out of his way to avoid that searing pain of seeing a building. I understand why he did it though and I do not knock him.

Many of us have places which bring out the pain of grief powerfully within us... a church or synagogue, a school, a playground, perhaps a bedroom in our house or a favorite camping site. We ache at the sight of these places gripped by a yearning for what will never be again... the memories turning in our brains, jabbing at our hearts. We may turn away suddenly as though slapped hard or stare empty eyed, weak in the knees. Tears, anger, guilt or just a heaviness in the air might smother us.

Sometimes we have to face these places. We have to pass them or even enter them frequently if not daily... the work room in the basement, the baseball diamond down the block, the expressway home or the cemetery within sight of our front door. We may deer-in-the-headlight
the journey or just suck it up and deal with it.

Life is a journey through places touched by people, animals, activities and events that leave their mark on us... an imprint if you will. These places can entice our senses into memories long after the people and events have passed. The key for me in overcoming the intensity of those place-related memories that brought Rachel and her life experiences to mind was in eventually accepting the pain and the memories related to a place. In the end I came to treasure those
memory places, the good, the bad and the ugly as "historical markers"... settings in the life of this amazing person, my daughter though, years later, some can still poke at my heart as I pass them
by.

Running away

[written for the Racine/Kenosha WI Compassionate Friends December, 2010 newsletter]

How many of us as kids stomped into our bedrooms, sick and tired of our young lives and our overbearing parents, ready to pack it up and hop on the first freight train out of town? It's a common feeling among kids, especially teenagers... and at times understandable. Life can be a bear.

Fast forward a decade or three. How many of us as bereaved parents have gotten into the car heading home from work or on our way to the grocery store and just wanted to keep driving? We suddenly have this urge inside to pass by the places we need to go to and drive away from it all... searching with that terrible emptiness inside, just wanting to find a place where we won't hurt anymore.

We can no longer bear to pass by the school he attended, the church where she was baptized, the cemetery where he now lies. We want to roll down the window, toss out the "I'm fine" mask and roar down the street into the sunset screaming at the world, God and anybody else with "a plan" whose been telling us to just move on and get over it... "I'm moving on, sucker!"

Probably a bit melodramatic, but that was me the first couple years after Rachel died. Some days life weighed in on me and I would feel closed in as though I couldn't breathe. The heavy mask would fall clanking to the floor, loosened by tears, and there I was approaching my street ready to gun the engine and drive on.

So, as a bereaved parent what could I do about these pedal-to-the-metal feelings?

Years ago my Mom said something to me as I was preparing to go off to college which I've never forgotten: "You can change your sky, but not your heart." No matter where I went what was in my heart would still be with me. It's an old saying that makes a lot of sense, though I didn't appreciate hearing it much at 18 or remembering it at 47! Running was a quick fix that in the end would fail.

First I had to take off my mask, turn it around facing me and say, "No more." I was tired of pretending to be "just fine." I wasn't. I then had to name my pain. What was causing this intense emptiness in my life? Beyond the anger, guilt and sorrow it all boiled down to one word: Love. As my TCF chapter leader has said many times, "It wouldn't hurt so much if we hadn't loved so much." Finally I had to voice how I felt... speak the pain out loud to others... and that was hard because most folks didn't want to listen. They wanted my mask back up. I suppose that's where a group like The Compassionate Friends helped out. I could say her name and show the Love (i.e. pain) and nobody judged me.

I still do run away now and then. I can go for a drive in the country, take a weekend away, get lost in a book or DVD. Running away can be very healthy as long as I bring my heart, that Love, along for the ride and remember to come back home afterwards... with the mask grumbling in the trunk.

Music and Grief

[An article I wrote for the October 2010 newsletter of the Racine/Kenosha, Wisconsin Compassionate Friends Newsletter]

One day when Rachel was about five years old I took her to the grocery store with me. As we went up and down the aisles some boring muzak was playing over the intercom. Rachel however was spinning and dancing nearby me and I noticed people staring.

I leaned over and whispered, "What are you doing?"

Smiling she replied, "I'm dancing to the music."

"Rachel, the music is not quite that fast paced!," I hissed.

She looked at me... surprised and big eyed and responded, "Not THAT music! Can't you hear the music that I hear, Daddy?"

Lately, each night when I get home I put a CD into the player and listen to a song, “Beauty Will Rise,” by Steven Curtis Chapman. Chapman lost his daughter, Maria Sue in a tragic car accident in 2008. The beat of the song and the words lift me up... give me hope on the most hopeless of days:

"Out of these ashes... beauty will rise
and we will dance among the ruins
We will see it with our own eyes.
Out of this darkness new light will shine
And we’ll know the joy that's coming in the morning...
in the morning... Beauty will rise!"

Music is a very personal means of finding peace, expressing anger or dancing in the grocery aisle. It can touch on the deepest pain, the most heartfelt hope or some deep, abiding joy. Sometimes it expresses what we can't put into words ourselves or even form in our minds. It howls, sighs, regrets and rejoices.

Music can bring back memories and visions of those we love:
--A man who tears up any time he hears a song sung by the Sesame Street character, Elmo. His toddler son loved to sing with Elmo.
--A mother who had "Ropin The Wind" put on her son's gravestone, the title of an album by her son’s favorite singer, Garth Brooks.
--"Forever Young," a Rod Stewart song title, tattooed on the arm of the sister of a young man who died in a motorcycle accident.

Is there a right or wrong music? Nope. What works for you and is healthy is what’s best. Of course playing “Beauty Will Rise” every night loudly might get you in trouble with your spouse/partner so some discretion might be advised there.

I dance to the music inside me and wonder why no one else can hear the song. What’s playing in your mind?

Bill Sowers
Rachel's Dad

My Real Life "Role Playing" Limits

I spent about four months recently in an online role playing game at an Internet "hospital" in a combat area. It was fun and challenging. One thing I quickly learned was how to set role play limits... what I would and would not be willing to do or have done to me. It made me think about real life and how it would be cool as a bereaved parent to set "bereaved person limits" that others could easily read. Here's what my personal list would look like:

--Don't worry about avoiding "sensitive" topics like cancer, death and sick kids. Been there, done that, have the scars to prove it.

--Don't close me out of your life. I still laugh, tell bad jokes and enjoy the company of friends. Yeah, I’ve changed. But maybe you might like this new me even more. Give me a chance to show you.

--Let me tell my child's life stories. Her death was one event and there is so much more to share about her amazing life. Enjoy the wonder of who she was with me.

--In those hard times let me tell my child's death story. I know it's uncomfortable but all you have to do is listen. Sometimes I have to go back to that place and revisit it. Be my silent but supportive companion.

--Allow my tears. They rarely come ten years later but now and then something might trigger them. Stand by without judgment or impatience. My tears tell a story of great love. Honor them.

--Understand that I may get sad or grumpy around Christmas or my daughter’s birthday or death anniversary. If you want to, send me an email saying that you remember her and want me to know that. You have no idea what a gift this would be for me.

--Do share you own sorrows and trials with me. I will be there for you as you have been there for me. I will not compare my loss to yours but I may have a better grasp of your own pain because of it.

Those are my personal bereaved person real life role playing limits.”

Guilt and Regret

There are many things regarding Rachel's life and death that I regret: walks not taken, a concert missed, a bad day at work that spilled into me yelling at her for no reason... Regrets. I can look back and feel a pang now and then or shed a tear, but I know that these are things that are forgiven. I have forgiven myself for my own humanness as her father.

Right after Rachel died I had a series of terrible "self-beatdowns" regarding issues such as the insecticide I used in the basement (which might have a link to the form of leukemia she had), the fact that I didn't see possible signs of leukemia before she was diagnosed and some just plain silly things that I totally blew out of proportion. This was guilt. I had stood before the judge (myself) and jury (myself cloned 12 times), found myself guilty and thrown myself into a dark hole. This, for me, was guilt.

Guilt is an ugly, capped, steely cup that forever holds the misdeeds, real or perceived, that I have committed. The festering brew of misery within it has no means of escape. It's only added to by new guilt that I pour into it.

Regret, to me, is like a battered old metal garden watering can. It takes the pain in knowing that I have made mistakes... some terrible. It lets me hold these feelings for a while (to ponder them), but in the end Love (for my child and for myself) allows me to pour them out. Regret waters a garden of new possibilities within me. I can be a better person because I have learned from what I have done that was not right or good. Old regrets can resurface and pour back into the watering can. That's ok because Love is always there to tip the can over and pour those regrets back out.

I am guilty of many things I have said, done and thought in my life. But if my judge and jury is Love, the sentence will always be commuted to regret, not guilt. Just before she died Rachel told me as I was crying, "It's OK, Daddy. I know you tried your best." What greater or more powerful judge did I have than her.

Holy Innocents

[Transcribed from a message sent to the DayByDay email list, December 27, 2007]

"A voice was heard in Ramah, lamentation, weeping and great
mourning, Rachel weeping for her children; she wouldn't be
comforted, because they are no more."
--Matthew 2:18

Tomorrow, December 28th, is "Holy Innocents Day" within some
Christian churches. The day commerorates the slaughter of baby boys in Bethlehem at the order of King Herod who was seeking the young Messiah he believed to have been born in that town.

The past six years I've been struck by the verse above from the
Christian part of the Bible. It echoes the sorrow of Rachel of the
Old Testament/Tanakh who died in great pain giving birth to her son,
Benjamin and of course it is also the name of my daughter, Rachel.

My Rachel was often an observer and pithy commentator on life. She
espcially had an uncanny knack for a seven year old of seeing into
the bologna that some adults like to spread thick over difficult
issues in life in order to "protect" children. Rachel didn't like
bologna... the meat or the talk.

Leukemia made Rachel even more observant and within the limited
confines of the hospital "world" she would ask difficult questions
and comment on things said and done that caused some well meaning
adults to falter at times.

Death came to the oncology ward now and then. Most of the time the
staff would wisk a child and her/his family down to the ICU away
from all of us for the final days. But sometimes there was no time
or the staff saw no need to move the child.

One day Rachel and I were walking the ward as we often did. We came
to a room at the end of the hallway and discovered it was empty.
There was a boy a bit older than Rachel who'd been in that room.
Rachel had worked on art projects with him. She asked a passing
nurse where the boy was.

"He's left," was her only response as she moved on down the hall.

The room looked like no other "He's left" room we normally saw...
where the child had gone home. It was totally cleared out and was
being cleaned from top to bottom. Yellow caution tape crossed over
the doorway warning people to say out. Rachel stared inside and we
moved back down the hall to her room.

We sat there for quite a while in silence, some TV show on that we
weren't watching.

"He died, didn't he?"

Dang! I knew it was coming... but like an idiot I tried to dodge
the question....

"Who?"

I could sense the irritation of her response, "The boy at the end of
the hall who sat next to me at the Halloween art project... He's
dead, isn't he?"

"Yes."

There were two levels to Rachel's anger... VERY LOUD and very
quiet. Very quiet was much worse than VERY LOUD. She sat there for
the longest time, deep in quiet anger... thinking, thinking,
thinking.

I did not sugar coat things. I couldn't. She would have seen that
I was laying it on and scraped the frosting off with a sharp
tongue. I also knew that if she wanted to talk about it she would
do so in her own good time... the hardest thing for me to do... shut
the heck up and wait.

Finally she said, "I am no going to die."

She didn't say it in a whiney voice. She said it with the stubborn
will of a soldier going off to battle. When I look back on it I
would say that she said it out of Love... quiet, angry Love. And I
don't think she was speaking just to me either (or expecting a
response from me)... She was facing Leukemia and God and the doctors and the whole freaking World and stating the power of who she was. Moments later she had a smile on her face and we were laughing our way through a game as though the heaviness of the day had melted away.

I read the Bible text at the beginning of this message this morning and
thought of my Rachel. She was a different Rachel from the one in
the Bible. There wasn't a lot of "lamentation, weeping and great
mourning" in her. There was a great force... a will that children
like her should not die. My Rachel wouldn't lament as much as vent.

I would see her now at the Gates of Heaven, a force to be reckoned
with, greeting other children like herself... other Holy Innocents
arriving there... with the same stubborn power of Love that kept her
going right up to the day she died from this plain of existence.

My thoughts for Holy Innocents Day

Bill Sowers
Father of Rachel of the quiet, angry Love

This Little Light of Mine

[ORIGINALLY WRITTEN December 22, 2002, for the DayByDay email group]

Dear Friends,

"This little light of mine
I'm gonna make it shine
This little light of mine
I'm gonna make it shine
Let it shine, make it shine, make it shine."

This is one of the hardest songs for me to listen to. Rachel learned it at school and liked to sing it. It's funny that I like to describe her as a "star" and this song reflects that thought... letting light shine forth.

We've just passed the winter solstice. The days are beginning to lengthen. Most religions, especially those originating in the Northern Hemisphere, have holy days or festivals at this time of year celebrating light. Bonfires are lit. Lights decorate buildings. Processions wind their way through towns and cities with people holding candles and torches. Humans celebrate the return of light into the world.

We have a three foot high candle decoration up about 20 feet in our sycamore tree in our front yard... our light in the darkness. We got it this year to replace Rachel's reindeer light decoration which had finally broken after many Decembers of service. We've been plugging in the candle light decoration each evening and it shines out over our street and into the world.

This past week has been a hard one for Diana and me. We'd made it through our first two Christmases after Rachel's death rather well. We planned "events" to memoralize her which the older kids wanted to participate in. I went out each Christmas and bought a stone rabbit statue for our yard (Rachel's favorite animal). We used ritual and symbols to remind ourselves that, though she was gone, she was still an integral part of us.

But we didn't have anything like that ready this year. We didn't *do* anything. We didn't know what to do! I didn't see any stone rabbits I liked. We couldn't think of anything special to do at the cemetery other than change the silk flowers. The loss had truely hit, strangely three Christmasses later. We got really down. Was she fading from our lives? What a dark place to be.

Last night I was going to bed. It was late. I had on a Christmas CD I espcially like and was sitting in the dark listening to it.... all the lights out. On this CD is a beautiful version of "This Litgle Light of Mine." I almost always skip it though... don't want to listen to it. As I was sitting there in the dark I realized that there was a bright light shining in through the front window. I went to the window, opening the blinds and it dawned on me that I hadn't gone out and unplugged Rachel's candle decoration. It was 1 a.m., cold as blue blazes and I was in no mood to go out and unplug anything. I stood there glaring at that light up in the sycamore tree.

I'd forgotten the CD... and just then I heard a clear baritone voice begin to sing....

"This little light of mine
I'm gonna let it shine
This little light of mine
I'm gonna let it shine
Let it shine, let it shine, let it shine.

All through the night
I'm gonna let it shine
All through the night
I'm gonna let it shine
Let it shine, let it shine, let it shine....

I got down on the floor in front of the CD player, which sits in front of the front window... and listened... and once again... I "got it." We *did* have something this year. It had been sitting up in a tree looking down on us every dark night.

There is a light shining down on us, leading us on. I've written before that my faith teaches me to imitate the actions of my God as he has revealed them to me. I believe that other lives around me also reflect my God as examples of goodness, courage, love. These are my guides... lights that lead me through a dark journey.

My child is a light. I will sing of Light this Christmas Eve Night and remember a light over a stable, a light over our front yard.. and the light who leads me home, skipping along a nature trail, putting sticks and rocks into her pockets, pausing to watch a cardinal flying overhead, stopping in awe to see how the setting sun turns the clouds pink and purple.

Our wish and prayer for you all at this holy time of the year is the memory of your Lights, your Stars... burning through the black pain that also comes with what sometimes seems like a year-long dark winter... and a little peace that come with that light.

Bill and Diana Sowers