that thing with feathers

Last Sunday marked four years since I walked out the doors of Vanderbilt Ingram Cancer Center completely cancer free.  

On Monday, I shaved my son’s head.  

It wasn’t because I wanted to give him a cool haircut.  It was just time.  I cannot be sure if it was the least or most motherly thing I’ve ever done. 

We had watched pieces of auburn hair fall all over the house, his bed, his shirt, and the floor for a week or so.  He would reach up and pull out several at a time.  He shrugged it off at first but I watched him become more frustrated until Friday afternoon, he just broke down and asked me to cut it.  I tried to get him to go to the salon, but he refused saying that it was pointless - such a realist.  His scalp hurt and he was mad.  I pulled a chair into the bathroom and trimmed the back and the top and we both cried.  He asked me why this was happening to him.  I have no answer so I told him that.  We talked about chemo and how it attacks everything - even hair.  He asked why they can’t figure out a chemo that doesn’t kill your organs and I assured him they are working on it.  By the time I was done, he was telling me once again that he’d be fine.  He stuck that Mississippi State baseball cap back on his head and went back to bottle flipping.  By Monday, he was ready so some friends came over and there on my patio, I took the clippers to his scalp and officially accepted the reality of where we are. 

Then I realized something.  I could see his face.  His eyebrows, his freckles, his smile, and those lashes.  As shocking as that bald white head was, his features that had been framed by that mass of hair on his head were now so obvious.  I could see the cowlick that was there when he was born and remembered the time when he was a newborn and I was taking his picture for a birth announcement.  He was sound asleep and that cowlick was shimmering in the sun as I was trying to pretend like I was some kind of professional baby photographer.  It’s still there.  He and I giggled at his bald head the next day and I marveled at it’s perfect egg shape and gave thanks to the Almighty that his permanent teeth have grown in remarkably straight because they are now front and center.  Even the night nurse said he was pretty when she saw him in the daylight.  I agreed.    

I could only think of Samson in the Bible and how his hair was never to be cut or he would lose his strength.  Mean ole Delilah got wind of this and shaved his head, physically weakening Samson.  In then end, though, Samson found his strength, not in his hair, but in the Lord.  And that is where we will find ours.  

Our lives have drastically changed.  It’s like we spent six years chasing a bunch of jumping crickets into a cage, stood back, took a breath, and someone opened the top.  We are four rounds of chemo into this thing.  For forty-nine days, I have sat in waiting rooms, hospital rooms, and exam rooms with paper coated tables.  I hate paper tables.  The sound is like nails on a chalkboard to me and there’s no hiding when you displayed in all your glory on a paper exam table.  And, yet, there is my child, on display in the middle of the room on a crunchy piece of paper.  He confessed to me that he hated paper tables the other day - I had never shared the anxiety they provoked in me.  I don’t share the anxiety that any of this provokes in me until he brings it up.  This is his story and although some things compare, it’s not about me.  However, I can see the me in him and I hate it - it’s like watching myself walk outside of my body.  I watch the fear come over him before the doctors come in, the same one that I’ve experienced and I wish he could be innocent and oblivious but that’s not the kid I have.  I have the kid who has heard discussions of scan days and results, who is now facing his own.  He knows the magnitude.  He starts to lose it and I spend thirty to forty seconds talking him off the ledge and he holds it together while they come in, then breathes when they leave.  And all the doctors wonder why he doesn’t smile when he sees them.  

Bailey controls what he can and I let him.  It’s never been easy to get him to comply and there’s nothing like being told you can’t do something to trigger dogged determination in an already stubborn kid.  He hates hospital beds - they make mechanical noises every time he moves so he avoids the bed all day and pretty much refuses to sleep during the day.  He also hates wheelchairs so even if he vomits first, he will stand up on those crutches and keep walking while I hold my breath that he doesn’t fall or pass out.  As tired as he must get of me, he does not allow me out of his sight, so I never move more than five feet away.  He is the hawk.  He has so very few choices and certainly nothing normal, yet, he rarely ever complains.  He has accepted that this is what he has to do to get on with his life and takes ownership of what he can.  He can flush his own line, helps the nurse draw his blood, and will spout of more facts about St. Jude than most people who work there know.  Most

of his days at home are spent lying around, playing video games or watching YouTube videos, but he has one or two days between chemo where I see the spark come back and he starts picking on his sister, making jokes, and flipping markers.  If he suggests fun, I find fun.  I drove forty minutes last week to submerge him in golden retriever puppies because if there’s one thing that brings him joy, it’s a dog.  Those dogs know it too - even wiggly puppies will sit still for him. 

I have fully accepted my role too.  I am not one to drown myself in pity so I take the lipstick and earrings approach as I always have, plus I don’t own a pair of yoga pants.  I face the day with what comes and when I’ve had enough I just shut it down.  If what I was doing the day before didn’t work then I back up and punt the next day.  I am ever grateful that His mercies are new because I certainly use them all up.  I find ways to entertain myself and my natural tendency toward introversion is a bonus in this situation.  

I’ve become best friends with Joanna Gaines, even though she’s not aware.  I read "The Magnolia Story" and I’m more inspired than ever by her.  Their story is one of faith and trust in desperate times which ultimately led to blessings and success.  I also hope that she shows up at my house to open my kitchen and bring me some of those antique doors and shiplap while I’m sitting at St. Jude.  She’s still got twenty-seven weeks to make it happen.  

I read about Danny Thomas and the history of St. Jude.   I just don’t even believe in coincidence anymore - all of the things that happen in life are by God’s design and provision.  Danny Thomas gave away his last dollars once to a church needing funds for missions.  He prayed to St. Jude Thaddeus - the patron saint of lost causes - to return the money tenfold and the next morning got a job offer for exactly that.  He asked the saint to “show me the way in life and I will build you a shrine.”  I used to watch “Make Room for Daddy” when I was a kid (clearly an old soul), and I was also absolutely enthralled with Marlo Thomas and those little bald children on the telethons each year.  I would sit there glued to it, willing them all to live until my mother made me turn it off.  Little did I know that would be me, holding my own little bald son in the middle of Marlo’s father’s shrine.  

People have asked how we are.  We are waking up each day and putting one foot in front of the other.  Once a week, I load up two suitcases and a storage bin to camp out in a hospital room for four to five days.  I could earn a badge for my packing and survival skills.  Stephen works during the week and we switch off one night of the weekend so that I can be home with just Kate.  I arrange rides, pack lunches, and sign folders before I leave and sometimes, like last week, I prefabricate costumes for Dr. Seuss week so that all of her needs are met.  Some things go better than others like when I used duct tape to transform her into a truffula tree that she could easily put on when I wasn’t there and she got stuck in it so I had to cut her out and start over.  We had a good laugh as she wriggled her way out of that shirt on the kitchen floor.  

My days are spent either at appointments with Bailey or sitting by a hospital bed watching the poison drip into his veins, ready to catch vomit, and keep track of what medicines are working.  Stephen comes by for lunch or brings Kate after work and I can walk out of the room or get something to eat.  There’s not a significant amount of sleep going on - the hospital is a place of hope but certainly not a place of rest.  When we get the green light to leave, I pull that wagon with one hand, push a wheelchair with the other and load up the car.  I caught a glimpse of my reflection in the window doing this the other day and it looked ridiculous.  I had to laugh because at that moment I was winning.  I was winning at hauling all the things and the kid with the brace and the crutches to the pharmacy through the hospital and to the car while taking up forty square feet of hallway space.  At home it’s a constant schedule of medications day and night, managing side effects, and trying to figure out how many calories we can shove into his body.  I do exciting things like make pancakes at four o’clock in the afternoon.  I enjoy the times when I come up for air to walk through Target or take Kate to soccer practice.  

What I am not is alone.  I may look alone sitting in that room but I’m not.  First of all, I serve a mighty big God who has promised to never leave or forsake me.  He gave me the ability to do hard things.  Cancer itself is an island that no one really gets unless you’re living on it.  I’ve lived on it in every capacity - as a daughter, as a wife, as a mother fighting for her own life, and now I’m willing my own son to live through all of this while simultaneously parenting my daughter.  I’ve never expected anyone to understand or imagine what that is like because truthfully it is almost unimaginable.  Yet, daily I’m surrounded by others doing hard things, the same hard things.  There is also always someone who has it worse than I do.  If I have to be honest, I have lived in a world of comparison for the last six years or so.  I would sit at Vanderbilt and think, well at least I can walk now, or at least I put on lipstick, or at least I drove myself here.  At least, I still have my sense of humor.  

I often sit here and thank God for the “at leasts.” There are a lot of them.  Bailey has a terrible disease, for sure.  At least his disease is contained to this one area in his femur, and at least he’s got a fighting chance.  At least I’m alive to care for him.  At least we live close by.  At least he only lost one pound this week.  At least I have coffee.  

But truthfully, these are all really “at mosts.”  At most, God has provided through science, technology, and the hands of physicians.  There is medicine that will kill the cells that have caused this tumor to form and doctors that know how to use it.  There are nurses who watch him closely and take time to talk and listen to mamas.  There are surgeons whose entire careers have been focused on the fixing of limbs.  In a few weeks, that will come to fruition as the broken parts of my little boy are removed and replaced with new shiny metal ones, giving him a scar that will tell a story of hope and love and a chance at a normal life.  

At most there is love.  Love that sparks something inside the hearts of other people to reach out and take care of our needs.  Love that causes people to write checks, send cards, drop off food, or take your little girl for the day.  Love where grown men shave their heads so that twelve year old boy with cancer sees that he’s not alone.  Love that has other twelve year olds writing get well cards, selling donuts, and wearing superman shirts to school.  

At most there is hope.  Hope that comes from what we can’t see but what God has promised.  There is a quote from Emily Dickinson in the hall at St. Jude that says, “Hope is the thing with feathers that perches in the soul.”  So maybe that big scar on his leg will be just the thing that makes him fly.  I know my scars have.  

And at the very most, there is prayer that covers all of these things.  A few weeks ago, I wrote some words that no doubt came straight from above typed through my fingers into the keys of a worn out laptop.  It was raw. It was real. I cringed when I hit the publish key.  It was a little more of me than I like to reveal.  I expected maybe two or three hundred people would read it as usual but, to date, over ninety-four thousand people have read my words and heard the cry of my heart because God chose the vessel of a Christian artist to share our story.  I would guess that most of those people uttered a prayer and Bailey’s name because I think it would be hard not to.  Can you imagine the shoulder tap God felt ninety-four thousand times?  There’s a power in that kind of prayer that I can’t even fathom.  If I ever meet Matthew West, I owe him a hug. 

Funny how that works.  As I was sitting there trying to figure out how we were going to manage all of this - the schedule, the chemo, the bills, our lives - God was revealing Himself.  I watched the numbers of hits on that post climb and He was saying that He had that all covered.  Those things are all His anyway.  He will provide, I will be still and let Him.  This is hard and it is ugly.  It is hard to spend eight hours pushing my kid through machines that look at his insides when he is anxious, and tired, and scared. It is hard to watch him carry a backpack of IV fluids instead of a backpack of school books.  It is hard to hear him say he misses his friends, his school, and his teachers.  It is hard to find ways to entertain him without too much walking or too many germs.  It is hard to tell your children there are no spring break trips, or summer trips, or even swimming this year and to reference a chemo schedule to see if you can juggle your daughter’s activities.  

It is hard, but there is beauty here as there is in everything if we look for it.  As my new best friend, Joanna Gaines says, “If you can’t find happiness in the ugliness, then you’re not going to find it in the beauty either.”  Sometimes things have to be stripped away to see it, just like Bailey’s hair.  There is beauty in the fact that I have spent six years memorizing every thought and move my kids make because I didn’t want to miss it, I wasn’t sure how much of it I would see.  I know them so well that I don’t have to guess what they are thinking.  There is beauty in the fact that I get a year to hold my son close to me - the very year where most people’s kids start slipping further away from them.  Although Bailey is sensitive, he is not outwardly emotional.  I’m learning that he’s more selfless than I thought or certainly expected a twelve year old to be.  He will ask if I’m happy as we sit in that hospital room together, his way of making sure I'm ok.  I always tell him yes, that we can’t change the situation but we can change our attitude.  

There is beauty in being the big little sister.  We are so intentional about our time with Kate that she is continuing to thrive and when we are not with her, others get to see her joy.  She asks good questions about chemo and pain and scars and surgery and I answer them honestly as I watch her little mind process it all.  She may have toddled through the first go round but this will leave a lasting impression of compassion and understanding.  What a beautiful thing to walk away with.  

I often wonder how much our kids really get that we are on this planet by the grace of God.  They have heard my story over and over again to the point of eye-rolling.  Bailey asked me one night if God told me that he would be ok and I said, “Yes. Did He tell you?.”  

“Yes.”   

We will deal with the ugly.  We will look for the beauty, and we will find that thing with feathers that perches in the soul. 

Kimberly

Running with a smile and a hair bow 

"All people and things are different"

Checking out similar shiny new metal bones.
Also note the sucker from the bank in his mouth.

Ever loyal Oscar

Spring Break at St. Jude