A Remarkably Unremarkable Thing

Exactly fifteen years ago, an unusual sound coming from my son’s bedroom stirred me awake. The sound of fear…the sound of the unknown…a sound that definitely meant something wasn’t right. Still, so long between now and that day, I can hear, and nearly feel, the unsettling rhythm that was generated from somewhere deep within my brave ten-year-old’s brain on that cold January day when he had a frightening seizure, the culmination of a season -long medical mystery which ultimately resulted in the discovery of his brain tumor.

So he’s twenty-five, newly married, healthy, and well. Though haunted by that sound on the occasion of its fleeting memory, I am certainly no longer consumed by the health issue that stole a year from our family. For certain, we are lucky. It was a big deal. Now, it’s really not…at least if you ask my Sam, who doesn’t mark the days or, likely, think of himself as anything but a young man looking out at what his future holds.

For a time, I was consumed by the questions, most unanswerable, the insurance referrals, the appointments, the concerns, and the unspeakable anxiety that would accompany anyone in my situation. Dare I read too much: five similar types of tumors had been reported in a study that I had come across online. All patients eventually had recurring symptoms, and all died. We filled the spaces where the worst fears crept by selling caps to raise money for pediatric brain tumor research and, really, to distract ourselves from what was overwhelming.

People…kind people…came forward. Neighbors brought casseroles, bought caps, and offered rides for the other children. Time passed. The brain scans were clean: monthly, quarterly, biannually, every year, then five years between.

My hair dreaded slowly over several years. I stopped combing it altogether one day, as a sort of tribute to a dear friend that left us way too early, and because I had always admired how my sister wore her hair. I had my hair tended by a stylist four times over five years, the last time just before my son’s wedding this summer, and I ripped them apart from each other regularly so as to avoid getting one giant stuck-together mass of hair, which was kind of what is is anyway.

I loved them, especially the last few years, when I could tie them up. Never did I think too deeply about how I was perceived by others; my dreads felt right for me. They grew heavier, obviously, and the weekly shampoo became more brutal, taking a day and a night to dry, resulting in stiff shoulders, soaked sweaters, and hard frozen dreads on bitter winter mornings when chicken chores could not be avoided. This leads to another situation: when a chicken got stuck on my head. I guess, in some ways, I had had enough. Maybe it was time to cut my hair. It had to have been a bit traumatic for the chicken, too.

I thought about it, a lot. Maybe I would have been brave enough to shave my head fifteen years ago, when we wore our caps in solidarity with Sam, but I do not have the courage for such a drastic measure in my middle age. Or maybe that’s not what it is at all.

I have started cutting and combing them, one knotty dread at a time. It’s making me sad, and I’m not sure it’s the right thing to do, but, as with so much else, it’s what I’m doing.

Five years ago, a lot was different. So much was locked up in each of these knots: fear and hope, certainly, happiness and hardness, trials, cowardice, loss, bravery, hurt, disappointment, determination, and unnamed emotions that have yet to come free. I have broken three combs to the point of uselessness, but I still have two thirds of my work ahead of me.

Fifteen years ago, a lot was different. Nineteen of the children that would be part of our tribe for even a fleeting moment of time had yet to come through our doors. We hadn’t known the emotional trials that would follow the darkness and subsequent healing of what happened to our then ten-year-old. We hadn’t known the fight that would empty us out on the other side. We hadn’t yet known the power of our strongest march. Maybe we were confused. Maybe we still are.

I understand that there’s no scientific rationale for time passing more quickly when one grows older, but somewhere deep in my soul, there seems to be some validity to this concept. The seemingly endless nighttime awakenings, the hours spent studying leading up to finals, half-a-day spent sitting in a hospital waiting room, the months waiting for a sibling waiver to add a brother to our band, the thirty-some hours spent combing out hair that was allowed to freeform for five years…these things that consume us swiftly become part of our history as we await the next task, our next adventure, however unremarkable it may be. If we turn around through our moment of drudgery and uncertainty, it will soon be a reflection from where we have come…five, fifteen, a hundred years gone.

Elliott left this morning to fly back to California, to the university where he has now nearly finished his PhD. He encouraged me this week as I unleashed my first few dreads, assuring me that this uncertainty would soon pass, and that I would “watch it go” like so many other things.

In a week’s time, I should have combed out all the knots. Maybe there will be a sense of freedom…or sadness…or regret. Time, though, will carry me along, as always. I am trying to see this task before me, now armed with a new, much stronger comb, made of metal, as a release of what has bound me, and as a tribute to what is yet to come.

So here’s to one last clean scan, continues forward marching, and a Happy New Year with no more chickens stuck to my head.

Nothing Left to Give

It’s going to take some time.

I hope it doesn’t take forever.

I must have been in second or third grade, and she was a year or two younger than me. On the rare times that I saw her in the school hallway, I thought she looked older. Without a doubt, she was wiser.

“It’s a type of cancer in her brain, and the medicine makes her feel sick. It makes her hair fall out.”

It has been a cold, dismal winter. Dan came home early from work one afternoon. “I’m going to tap those maple trees.” The temperature had begun to rise above freezing during the day, and he did not want to miss the best window for tapping.

I wondered when she would be better, and when her hair would grow. I was curious about her long hospital stays. She came back to school again, and this time she wore a fabric scarf on her head. Her face was very pale, but I thought she looked pretty, and I hoped she was healing.

Our schoolmates held a fundraiser, and we collected enough money to buy an Easter basket that seemed to be tall as a mountain. I went with my mom to pick it out. A trophy of pastel beauty, brimming with prize eggs, gold coins, sparkly suckers, a giant solid chocolate rabbit, a pail and shovel in anticipation of summer days, and…best of all…a plush pink bunny with satin ears and a big white ribbon, perfectly tied around its neck.

This is probably how it’s going to be.

I’m not sure there will be an end.

There’s something so very big that has a way of clouding almost everything, obscuring the little surprises and making the good things a little less good, a little harder to see.

She was going to be so excited. I had trouble sleeping that night; my starry-eyed eight-year-old self was bursting with anticipation. This was going to make her so happy.

It’s going to take a long time, much longer than it has already been.

I’m afraid it might not happen.

I don’t know what she needs. It’s not what I thought she needed, or even what I had hoped she would want. No one knows, because she doesn’t know. And maybe she never will. I like to think she needs me, even when she is sure she doesn’t need me or anyone else.

We hung sap buckets from three silver maple trees just north of the barn. I felt a tempered excitement at the prospect of making the first batch of maple syrup in the not too distant days.

Something, some things, happened before our days even began. For that, everything that followed had to be different, affected by what happened. The happiness can still, I think, be happy. It’s just different, and maybe a bit more guarded.

We arrived at the girl’s house in the late morning. I thought I might split apart with excitement as we approached the door. My mom let me carry the giant basket, and I could feel my heart pounding with the eager footsteps inside the home. Someone fumbled with the lock. Was the girl going to be the one to greet us at the door?

I didn’t expect what happened next. There was a sharp cry, and the girl burst into tears and hollow screams of pain. She had caught her hand as she tried to unlock the door to let us in. When the door finally opened, we saw only the girl’s little sister and their mother, who spoke apologetically and appeared caught between wanting to graciously accept our gift and needing to tend to her sick, and now injured, child. The little sister stared at the fancy basket; her eyes were wide as saucers. I hoped the girl would share. I wished that I had something to give the girl to make her feel better.

I felt a little like crying on the way home. I, perhaps selfishly, was disappointed that the girl did not delight in the basket that we brought her. She couldn’t; not then. There was something much bigger getting in the way.

The girl didn’t come back to school anymore after Easter vacation. I secretly hoped that she had been able to enjoy the suckers and the chocolates. Surely she loved the magnificent pink bunny. We learned that the girl died before the summer came.

My girl will, I hope, find her own sort of happiness, despite the big stuff that tries to get in the way.

On a property full of barren trees, sloppy puddles that freeze in the night and never quite go away, and the aftermath of last year’s garden, sweet sap begins to drip, slowly but steadily from the old trees that had been all but forgotten. This is a gift to herald the sweetness of days to come, a gift that has found its way from deep within, when it seemed there was nothing left to give.

Marching On

103It seemed like a day ago that I was lamenting Sam’s return to the university after the Thanksgiving holiday.  Christmas is three days away, and Sam is once again home.  It’s not that it is really lonely around here, in the sense that there is a lack of company, without Sam.  It’s just that there is a lack of his company.  And I am well aware that in a few short years, he will no longer leave his shoes by the back door or brew espresso in his bedroom.

Elliott will be home tonight, for the first time since his cross country journey to Santa Barbara at the end of this summer.  Sam and another brother or two will be meeting him at the airport.  There have been camps, mission trips, sleepovers, and even some hospital stays over the years for the members of my tribe; I am not a stranger to such separation.  There is a certain comfort, and surely a sense of safety, in knowing that I will have all of my babies, young and old, with me for Christmas.

It’s the first time in all of my forty-eight years that I will not be with my parents for the holiday.  They are happy and well, and, hopefully, walking the beaches of Palm Coast.   There is a season for everything.  Change is hard.  It is still going to come, no matter how strongly I resist, and no matter how hard I push against the door.

Last week’s call from neurosurgery at Lurie Children’s Hospital reminded me of my true blessings, as if I wasn’t aware.  Those times when we become complacent as we march on through each day, those are the times when we are forced to reality, when we are forced to remember what has been, and even what may have been.

Something unthinkable happened to our family, and to Sam.  Ten years ago during Christmas time, we were in the depths of it, struggling to find our way.

This is Sam’s story, as written and compiled last May for the blog of a brave friend, Tara.  Two of her four children are brain cancer survivors.

“There was a period of time that my identity was consumed by one thing: I was the mom of a child with a brain tumor.  The sky opened up, and we were at the mercy of something far greater than us.  I am sharing some thoughts of the early days of our journey, some thoughts and journal entries from along the way, and then, eventually, the hope and healing that have followed. Looking back, I am able to see that there were plenty of signs.  I had made a promise to Gabriel, Sam’s younger brother, that I would ride the “Zipper” with him at our school’s fall festival.  After our turn at being mixed around in a metal cage, the ride had to close down because a bolt fell out. During that night, Sam, ten years old, came into my bedroom and woke me because he felt sick. I probably should have been the sick one after that carnival ride.

There were other things.  Little things, but things which collectively added up to great concern, and which finally caught the attention of the professionals when they culminated in a grand mal seizure on the morning of January 2, 2005.  We were met at the hospital by Dr. Suzanne Cook, who has been our family’s pediatrician ever since that moment.  There appeared to be “something” on the CT scan, and she shared that if this was her child, she would take him to Children’s Memorial Hospital in Chicago.  Within a short while, we were en route to Chicago.  I was unaware, at that time, that Dr. Cook had lost her beloved husband to a brain tumor just a short time before this.  The neurologist who first visited Sam at Children’s told us that he was fairly certain that Sam was developing classic epilepsy, and that was why he was having the seizures.  He hadn’t looked at the scan yet, as there had been a problem with the transfer of films from our local hospital.  He told us that with  epilepsy, Sam just could not swim in murky water.  Everything else, aside from taking medication, would be “regular.”  My husband, Dan, and I talked about this over lunch, how it was pretty good news, but it wasn’t sitting right with me.  Then they came in with the white coats after we returned to the room.  It seemed things were not quite as they thought,  and they requested that we please come into this conference room.  That’s when all of the important guys sat around us at a foreboding table and showed us the tumor on the MRI (the same tumor that was on the scan that they hadn’t seen).  They would have to talk to another doctor (our wonderful neurosurgeon, Dr. DiPatri) to see what he thought.  Then the meeting was over, and they got up.  I know I was shaking.  The intern sitting next to me left her chair out so I was stuck behind that table, and I just wanted to get out of that awful room.  That was the heaviest chair ever.  She had no idea.

There was a space of a little over two weeks between diagnosis and surgery.  What follows is my journal entry from January 11, 2005.

‘It has been nine days.  Yesterday was one of those indelible moments.  I wondered, at the time, if I was experiencing the demise of a life, of two lives, and all that follows.  He was my backpack
baby.  Perfect little boy.  I was right next to him, but still I could not save him from the fall.  The patch of  ice, the one that he had glided over so many times before, got in the way and Sam fell hard.  My arms full of groceries…Sam walked away, past the garage.  I struggled with the (bags): should I go after him?  Where is he going?  Down the block, Sam stopped and hurled his books into the snow.  He continued walking away, from the books, from the house, from me.  Why can’t I save you, little boy?  I got in the van; I had to.  Where had my boy gone?  He stood alongside an old oak tree, trunk larger than his 10-year old body.   He glanced at me as I pulled up, tears
streaming down both our faces.  Come on Sammy.  I’ll help you.  It seemed like hours before he turned and walked toward home.  Still wouldn’t get in the van, would not let me save him.  Time passed and I went to him in his room.  We dissolved in our sadness.  I’m so sorry.  Me, too.  I picked up the pieces, the strewn books, and tried to pull my thoughts together.  I wondered about why, and how, this had come to pass…This is all way too much for me to bear.’

Those days were among the longest I have lived.  I even wondered if my child would survive. Though the etiology and specifics of the tumor were unknown, the team decided that regardless, it needed to come out.

On the day of the surgery, January 18, 2005, I wrote:
‘Today, Sam went to brain surgery.  The hospital staff prepared us well, and everything has gone very much as they had expected.  There was a big vein that kind of complicated things just a little bit but still Dr. DiPatri felt that they had really gotten all of it…Sam really is remarkable, though, even more so than I expected.  Never has he complained, or asked why he had to go through this. It’s weird, I guess – all of our kids, biological or not, have gone through significant medical trials. This, though, has been surreal – a piece of time that landed down, just like someone accidentally elbowed it into our laps.  The essence of time really has no meaning as I’m here, and there is no urgency to anything.  The snow is coming down, and I have nowhere to go.  In some way, I don’t want to go away from the safe haven of the hospital, where the rest of Sam’s brain is.  It seemed an oddity that a child of mine could pitch a 55­MPH fastball because I am worth nothing to the world of coordination and athletics.  He’s here now, at my side, brain messed with, head stapled and bandaged, and I am afraid to take my pitcher home now.  Stay here a while, where they know how to take care of you, and where I won’t get scared.  Stay where I can sit by you and not answer the phone or door.  Where your peach face is forever peaceful, and your pleasant, quiet self sings with the angels.  All of the prayers, all of the well wishes.  Carry us home.  We are big.  We are strong.  We don’t know what to do or how to be.  We wish, and we watch the snow.  We are
And that is where the faith part certainly comes in.  While all of this was going on with Sam at the hospital, of course I questioned my faith.  I always have, and I always will.  That’s just part of me,
wanting to take things at face value but also wanting to dig deeper, and to find out “why.”  When Sammy first had his bandages removed, what I saw on his head was a crown of thorns.  As the wound has healed and his hair has grown in, most people do not notice the scar (except for the few days after a fresh buzz!)  Most people do not see Sam’s crown of thorns.  Most people may not see
God everyday, but still He must be there.  As we struggle with lots of changes and questions, I am constantly reminding myself that what is important is right before me.

In May, 2006, I wrote:
‘I often wonder why this happened to Sam, and what it all means.  I used to wonder if we were lucky or unlucky.  More than a year out from surgery, I know now that we are lucky.  I still wonder why others suffer from so many complications with their brain tumor diagnoses.  We need to keep working to make sure that others are lucky, too.’

And now, more than nine years out from surgery, Sam goes for long spans of time between brain scans.  I still wonder what his future holds.  I think back to the baseball season that began when his
stitches were barely dissolved, when he had to wear a hard hat if he would be allowed to play at all.  A young player approached Sam and asked, “why do you have that kind of hat?”  Sam’s reply: “Because I had a brain tumor.”   The boy merely said, “oh,” and ran off to field some grounders.

Sam is about to return home for the summer after his first year at the University of Illinois.  At a bit taller than 6’4″, he is athletic, driven, and happy.  I see the wisdom and compassion of someone who has lived decades more, and I cannot help but think that he, in some
small way, has been blessed through the opportunity to know the fleeting and precious nature of life, grace, and healing.”

So the office called last week to remind me that Sam is due for medical followup, as it has been two years since his last MRI.  We are going to take care of those things while he is home on his break.  And I have every reason to believe that what happens on those days will be part of this journey, part of the reason that we are all here.

It was the evening of our ride on the zipper, just before we knew that Sam was sick, that Gabriel made a Christmas trivet at a school festival.  I found it this year with our Christmas decorations; I am not sure where it has been for all of these years.  It is my reminder of the passage of time, and of the many blessings that are mine as we navigate toward whatever waits around the corner.

Wishing you peace this holiday season!