broken and mended

Sometimes I sit down to write things and the words won’t come.  Or I don’t want them to come.  I started a post about the new year at least three times before Christmas, then January hit with the threat of head lice and the norovirus which ripped through our poor Kate’s body and our carpet like the tasmanian devil.  Four days and a rug shampoo rental later, we resumed our regularly scheduled program.  

I was going to write about what Christmas looked like for us this year, so starkly different than the one six years before when I sat staring hopelessly into space while my baby girl ran her tiny fingers through my hair playing beauty shop with her new fake hair dryer.  I was going to tell about my visit to my fourth cancer clinic in five years back in December and how I sat there waiting on results again.  I was going to tell how I had myself scanned at Vanderbilt the week before, walked down 21st Avenue, grabbed a cup of coffee, had a visit with my hematologist, and stuffed a CD full of six years of MRIs and CTs in my purse to take to Chicago the next week to the doctor I’ve grown to know and love.  And how the results of those scans are still miraculous.  I was going to tell about how I went to church on Christmas Day alone, my gift to myself, to hear the story of Jesus one more time.  How I read the Advent devotionals as I sat in the pew - the ones on hope, love, joy, and peace - and how they intertwine to paint a picture of my life.  How most people talk about them and say them but mine are tangible.  Hope and love are the basis of my existence and peace and joy are the side dishes that come from clinging to them.  I was going to tell how as I sat there I decided that my opinion on politics could be summarized into one line of a single Christmas carol, “He rules the world with truth and grace...”

But, God stopped me.  He stopped me from writing that one and from writing my last post for my baby boy’s birthday on his actual birthday.  Every time I sat down, I couldn’t finish.  Empty.  It is clear to me why.  The words weren’t there yet.  And then they were.  I finished his birthday post in about twenty minutes on Sunday morning before church, two weeks late but full of all the words that people need to adequately know him, to pray for him, and a verse that so adequately and perfectly describes what I want for him.  

And now this.  Now I have the words.  

My original post started like this:

“Bailey has gotten pretty good with a yo-yo.  Really good, actually.  He walks around the house spinning and flipping the thing, usually a few steps behind me or circling the kitchen table while I’m working.  I’m getting used to drowning out the whir of that spinning sphere as it is much better than the thud of flipping water bottles.  But, at least once a day, the yo-yo stops.  The string gets tangled in a knot so tight that he can’t get it out and then he declares that there’s no way I could possibly get it out either, mostly to see if I’ll stop what I’m doing and sit and pick apart string for the next ten minutes.  Of course, I do.”

My life is just like that yo-yo string.  Life is spinning along whirring around busily up and down.  Then there’s a knot.  One that’s tied so tight that you have to stop what you’re doing, sit down and pick it all apart until something can actually spin again.  

It’s been tied once again.  It’s as much physical as it is metaphorical - the kind that punches your gut and doesn’t let up.  

A trip to the orthopedic clinic and a ten minute x-ray turned what we thought was a sports injury into a cancerous tumor in my sweet boy’s leg. I saw the x-ray, heard the words, and shook my head.  It’s like I knew it was coming or maybe nothing surprises me anymore.  The doctor asked me how I knew and I simply said, “I’m his mother.”  There were some words that included St. Jude and resection and another doctor’s name but I only heard sounds.  I went in the room and told Bailey immediately and he did what I’ve wanted to do at least four other times in my life, started yelling, running around the office and then asked if we could go home.  I had a flashback to the time my mom called me and told me she had cancer and I ran out of work, picked him up straight out of a nap at daycare and went home and held him all afternoon.  He was one.  I had a flashback to the Christmas that Kate was playing in my hair and I wanted to turn around and scream and tell her and Bailey I was sorry and hold them all day.  I did it again.

We went home.  

I told the nurse we were leaving and to call me. I called Stephen in Orlando and told him to come home.  Then the guilt.  When he and I were sitting in the waiting room before the appointment he had asked me several times if I was sure it wasn’t a tumor.  What kid asks that?  I told him no, hoping to God that it wasn’t, but I had too much knowledge to fully believe myself.  And why wouldn’t his mind go there, that’s all he knows.  Later that night, I crawled into his bed and apologized to him for being wrong.  He said, “that’s ok.”  I shared Joshua 1:9 with him and told him that I repeat that verse in my head a lot and he was going to need it.  

That first day was awful.  It was just him and me.  I couldn’t run, I couldn’t scream. I had to hold it together and look into his face and be brave.  He looked at me and said, “Well mommy, you had 17 tumors, and I only have one.” He asked me all day if I was scared and told me not to worry because it would make him scared.  I held it together.  I bought a new phone because mine only worked on speaker for the last three months since I dropped it in the toilet and that just wouldn’t cut it now.  On the way to the Apple store he said, “Mama, don’t you think I was born to fight this?”  The knot tightened and I said, “Yes, baby, I guess you were.”   He told me that I was prepared.  Those are the words out of the mouth of a twelve year old boy who asks six times everyday if I’m going to remember to pick him up from school and if ISIS is going to be on our airplane to New York.  Typically an extremist, he was calm, rational, and confident.  This has not changed in the last two weeks.  An hour into walking through the doors of St. Jude, our shy and serious son knew his medical record number and was counting down to have his blood drawn.  He knocked three pictures off of my wall in the first three minutes of being home with the crutches but kept trying.  I watched through his eyes as every bit of normal he knew slowly stripped away and he stood boldly in the face of it.  Crutches. Fine. Brace. Fine. IV. Fine.  

The next fourteen days were like groundhog day and I think maybe every day for a while will be.  We wish we were dreaming but it’s real.  Several times a day the nerve endings in my spine lit up into one hot flash over my body as I sat and watched the life I had slowly pieced back together spiral out of control.  I sat with him in the MRI, the CT, the IV, the ECHO, and the PET scan.   I explained each machine and how it would look and feel each time.  I’ve done them all.  He looked to me and if his eyes couldn’t see me in the room he yelled my name.  After seven hours without food and his third time lying still and strapped to a table, we both started to lose it.  He cried on that PET scan table and I cried with him from across the room.  The man kept opening the door, causing him to be more anxious and then suggested I medicate him next time.  I had other suggestions for him.  

It took a week to get pathology back to confirm osteosarcoma but by that time, he already had surgery to place a port in his chest.  People were still asking me if it was a benign situation, even the nurse wouldn’t give me a timeline until we knew “if it was something.”  I told her we already knew it was something so just go ahead and give me a date so I can prepare a little.  That’s when she looked at me and asked, “Why do you think that? Because you can’t catch a break?”  My actual thought was that I hoped my kid didn’t have two plastic tubes hanging from his chest for no reason.  

Chemo started two days later.  Stephen and I signed consent and we listened to the side effects and the knot tightened.  Bailey listened too although I knew he wanted to bolt and I resisted the urge to grab him off the table and hold him.  His only question was if the chemo would be finished in time to see the therapy dogs the next morning.   

When the chemo actually started it was just Bailey and me because Stephen had to take Kate home.  He was like a hawk and the nurses and I were his prey - no sudden moves and no surprises.  The bright colors, changing lights and the x-box didn’t drown out the reality enough for him and every time the door opened his head popped up like a whack-a-mole.  I sat beside him with my head on his arm.  He looked at me and asked for the fourth time that day, “Are you scared, mama?”  “No, I said.  I’m really not.  And you don’t be either.”  He finally went to sleep and then I watched the poison run into his veins as I counted his freckles, pushed back his auburn hair, and prayed over that bag as I had prayed over the ones that went into my own veins.  It worked the first time.  It will work again.  

Bailey woke up, puked, and asked to see the dogs.  We saw dogs.  For five days, he vomited. His only sleep was when he couldn’t fight whatever medicine they gave him and when I tried to close my eyes, he yelled my name or the door opened.  We sat in the floor of the St. Jude bathroom together and he declared that this chemo had to be working.  I couldn’t do anything but agree.  When we left, he was convinced the medications they gave him were unsafe and that he had been overdosed like Prince.  To date we have checked off every side effect that they said would or could happen.  We are currently sheltered inside the bubble of our house waiting on him to get enough white cells to go out in public, and trying to get him to gain back the weight he lost and a little extra would be nice too.  Fat is our friend.  Then, we will go back and do it all again.  

The best way to describe our radical lifestyle change is like being on an episode of “Naked and Afraid.”  I don’t watch much TV but I ran across that a couple times and it seems similar.  Stripped down and in the wilderness, not knowing if it’s a snake or a bunny around the next tree.  I came home from St. Jude with a very sick boy, an IV bag, three grocery bags of medication, and a what feels like a bootleg nursing degree that I earned in twenty minutes from a fast talking nurse educator that made my heart rate go up.    

So that’s what we have.  

But, here’s what we know.  He has provided and He will do it again.  Our list of provisions is so long that it is hard to be discouraged.  Afraid, yes.  Discouraged, no.  Well, sometimes, but it passes because every morning His mercies are new.  

As soon as I saw the tumor on the x-ray, my purpose was clear.  It was like God said, “Remember all those times, you asked why?”  My life was spared to be here for him.  You can call it what you want but the miracle is all the more clear. There is only one human that this boy will look to and be assured that he is ok.  That human is me.  His mother.  He cannot look at me and say, “You don’t understand because you never did this.”  Because I have.  Some people wait their whole lives and never understand their purpose.  I’m not forty yet.  

Stephen has been offered jobs out of state several times.  More money. More opportunity to advance his career.  It never felt right and felt too risky to be too far from Vanderbilt, so we said no.  We chose to be here, trading it instead for safe and comfortable even if it means less money.  The best children’s cancer hospital in the world is in our backyard.  It’s also free.  He provides.  

We have an army of people who prayed for us and with us over the last six years.  They have felt our defeat and celebrated our victories.  They are our support.  They love our kids like their own.  They felt the knot tie and the gut punch just as we did.  We draw a crowd and that crowd is steady.  And loving.  

We walked into St. Jude and the Child Life Specialist pointed to a picture on the wall of five young men standing together.  They all have osteosarcoma.  Bailey didn’t see the braces and the crutches or the IV lines that I’ll admit to seeing.  He saw them standing and smiling.  Alive and doing what he’s about to do.  He read the article in the magazine before we did and knew the names of those boys by the next day.  We see them in the hallways and he clings to their hope. 

Our church got a new pastor this year and he called us to come and pray.  He came over and told Bailey his story of how he had a type of sarcoma as a child and was treated at St. Jude.  He circled in prayer in our living room just as our other pastor that was also new and we have grown to love did six years ago for me.  He pulled a yellowed picture out of his jacket from 31 years ago.  He was standing in front of the dome at St. Jude when he was eight years old.  Danny Thomas had his arm around him.  We have a heck of a way of meeting the preachers but God gives proof when there is doubt.  

There are more.  So many more.  

Some days it’s like deja vu and some days it feels like you can’t do this another day.  There’s the practical stuff and the questions.  

“What are you doing about work?”  

I’m not.  He will provide.  No, we did not plan for half of our income to be cut, but we can live on less.  It will be a test of faith.  We apparently left out part of our provisions on the last go round so we are going to trust Him with all of them this time.  This is my job now.  My car goes to only one place and my schedule is no longer my own.  I will be his advocate, his nurse, his teacher, and his mother along with Stephen's wife and Kate's mother too.  I selfishly will miss working because I love it but it will be there.    

“What are you doing about his school?”  

Keep him alive. Fix the leg.  Worry about school.  That’s the order of that.  He will have a teacher and I'll probably learn some math skills and then we'll see where we end up.  In a world where most parents are striving for their kids to get ahead in academics, sports, and life, my focus has always been happy and kind.  Bailey is smart and he will have more life skills that most kids his age when it’s all said and done.  He will have empathy and compassion which is hard to teach in school.  

“How is Kate?”  

Kate is resilient and happy.  She was born that way.  She used to toddle around my mother’s hospice room and kiss her before I took her to daycare.  As a toddler, her busy little body would lie still next to me when I was sick and at three, she went to find the cane when I couldn’t walk.  She seemed to love deeply and understand the need to help before she should.  She struggled earlier this year in school and it ate at me that she was so unhappy. I worked diligently and desperately to change things and when they finally did, she immediately went back to happy.  She’s in a learning environment where she is also loved.  Kate will be fine.  She will continue to thrive because the foundation for how much she is loved has already been laid.  She will have empathy like no other and I will split myself completely in half to make sure that she is not left out.  

“How is Bailey?”

He is so many things.  First of all he is twelve.  Smack dab in the middle of the awkward transition between child and young adult - a hard place to be for this.  He has to sit with his mother over 90 percent of the time which is significantly uncool.  Yet, he will not let me leave his side - to go to the bathroom, to get coffee, to walk three feet to the pharmacy window.  It also makes me the pin cushion when he’s upset or mad or impatient.  Twelve year olds can tell time and read a schedule so when people aren’t moving fast enough, I hear about it.  They also research the St. Jude website and inform themselves on their own diagnosis.  Or mine does.  He and I are similar in so many ways.  He gets silent when he’s processing, doesn’t like crowds, and if he’s not feeling well, he likes to be left alone.  He hates being the center in a room full of doctors talking about him.  Me too.  He’s also strong and courageous for someone so small.  And dang stubborn.  He refuses to ride in a wheelchair which leaves me sometimes hoping he doesn’t pass out on those crutches cause he’s so weak.  I would like to put him in wagon with a movie player but that’s out.  He also sees the good and the helpful in the people at St. Jude, and they very much are.  He reminds me that they do their jobs well, and they do.  He looks past the common denominator of the cancer and sees hope.  And he makes jokes. Just when I need him to say something funny, he does.  Like when he called all the people trailing behind his doctor, the servants.  And when he got tickled over the lady addressing her son as “booty face."   

So here we go.  We are one week into a thirty-three week adventure that I wish I wasn’t on.  Bailey will endure the things that a twelve year old should not have to, but it will forever change him, and us.  Our kids will grow up knowing that life is hard and messy and you persevere to the next thing.  You don’t sit around waiting for easy or more time or for less busy.  They will not have the opportunity to be disappointed by the real world because we are already living it.  We have no reason to believe anything other than the fact that God will hold us as He always has.  

We will give up things, like the trip to the Bahamas that Stephen was in Orlando walking the stage to receive when I called him to come home.  Instead, our boy will be receiving a prosthetic femur so he can walk the stage at his graduation someday.  We will cling tighter to the hope and continue to experience the joy.  We will rely on faith and by the grace of God I will say things other than the string of ugly words that I sometimes want to when I think about this hard place in life.  

I was in my car a few days before all of this happened and heard the song, “Mended,” by Matthew West.  Those words have played in my head over and over.  I thought that maybe that’s what God sees in me, probably in all of us.  I have seen a broken me so many times - on a screen full of tumors in my body and then standing there looking at an x-ray of Bailey’s leg.  I am broken every time I look at the trampoline outside and the bike, and the scooter.  Every time I get an email from the baseball league and the cross country team.  That’s not what God sees.  He sees mended.  He sees unfinished.  He sees miracles.  

We will spend this year slowly untying the knot so that the yo-yo of life can spin once again.   When it does, it is sure to soar.  

"So hold on, it's not the end

No, this is where love's work begins

I'm making all things new

And I will make a miracle of you

When you see broken beyond repair

I see healing beyond belief

When you see too far gone

I see one step away from home

When you see nothing but damaged goods

I see something good in the making

I'm not finished yet

When you see wounded, I see mended

I see my child, my beloved

The new creation you're becoming

You see the scars from when you fell

But I see the stories they will tell

You see worthless, I see priceless

You see pain, but I see a purpose

You see unworthy, undeserving

But I see you through eyes of mercy"

twelve

Dear Bailey,

You are twelve!  I am late on writing your birthday post because our January got a little crazy!  You have had a great year with so much new and so much change and you have taught me so much about how you will be when you are grown up.  I imagine this year will be even more telling.  

You moved from elementary school to middle school this year.  It was a big change for me as we walked into that big new school together.  I know we both wanted to run but after the first day, it was pretty cool with all of the freedom and the lockers and being able to see different friends all day.  You even went to your first dance and I think my heart melted just a little at how cute you looked.  I watch you walk out from school when I pick you up and round that corner talking and laughing with your friends all the way to the car.  It’s funny to me how different boys look in middle school - some tall and some small but it’s obvious that even the ones you are looking up at like you and they will soon be looking up to you, no matter how tall they are.  

I have watched you become more responsible and I know that I can depend on you to remember everything I forget.  You know the rules and make sure that your sister follows them, even if she’s not happy about it.  You are good to her, even if you pinch her and yell, “KAAAATE!” at the top of your lungs when she annoys you.  You have a phone now and I like you having it just as much as you do because I can text you and call you anytime.  You make sure that I’m right where I said I would be at all times so that keeps me in check!  

We ventured to New York City this year - a place you really wanted to see.  Your eyes were wide when we walked though Times Square and you even got the pleasure of 6 hours of Mets baseball with good seats thanks to a rainout.  The city was fascinating for all of us and it was so cool to show you the city that daddy and I went to when we got married.  So much has changed but it was clear to us as we explained the story of how the towers fell a few days after we stood in them, that our lives are full of so much purpose and that your daddy and I were meant to be your parents.  We have no pictures from our first trip, so we had you take our honeymoon picture in front of the new memorial.  It’s only fitting that you and Kate would be standing with us on that same ground fifteen years later all together.  

You tried a new sport this year - cross country.  You ran with your middle school team and did really well.  It was not something you wanted to do, and maybe you did it for me, but I’m very proud of how great you did.  It was fifteen minutes of the most exciting thing I’ve ever seen.  Never once did you not look for me when you rounded the first turn and crossed the finish line, so I made sure to stand exactly where you told me so I wouldn’t have to hear it after!  I could always spot your little legs in the distance in those shorty shorts.  The best was when your shoe came off because an eighth grader ran over you and you fell.  You rounded the corner holding your shoe with your hand in the air, looking pretty put out.  Daddy and I laughed but then watched you put your shoe on, keep running, and beat your time.  Persevere is what you do.  

You have gotten pretty good with a yo-yo this year.  I’ve spent many afternoons working as you spin and whir that yo-yo in circles around the dining room table.  You can make that thing fly and spin and then come back to you like it’s some kind of puppet.  You searched you-tube for tricks and taught them all to yourself, practicing until you got it.  You’ve always done this.  Whatever you are interested in, you will practice until you perfect.  Sometimes I wish you would put that effort into those school projects like that book report on Prince, but I don’t really blame you. Even though Prince is a legend, a yo-yo is way cooler.  

You figured out the Rubik’s cube this year.  You picked up the 2x2 and worked it until you solved it then moved to the 3x3.  I can’t even figure out how your brain works but it’s something else.  You memorized those patterns and now you can do it in under minute.  You got 4 different puzzles for Christmas and solved them in two days.  I was hoping they would keep you busy a little longer.  Oh, well.  And there’s the marker flipping and the bottle flipping - I’m not sure the obsession on this but I’m not as jarred as I used to be with the bottle hits the ground with a thud. 

In this age of video games and Netflix, you still prefer to be outside.  Sometimes you just go out there for air even when it’s freezing cold.  Oh, and that dog.  He loves you the best.  I may be the one who feeds him, but we all know where his loyalty lies.  He stands at the window until you get home and when I allow his crazy self to ride in the car, he acts a complete fool until you hold him.   

The thing about you, Bailey is that you never give up.  Your stubbornness came from me but your strength comes from the Lord.  You love your family and you are a good friend.  You are sensitive and kind and caring, never forgetting to say thank you or take your dishes to the sink.  And, oh my goodness, are you funny.  As you get older and more mature, your sense of humor does too and I find myself learning more from you everyday.  If adults had half the sense that you do, the world would be a much more tolerable place.  I love seeing the world through your eyes because it looks more clear and much more real.  Bailey, you have drawn people in with your quiet, serious, and loving self.  Our friends love you like you are their own and only you could have made that happen. We love you more than you could ever know.  

Twelve is destined to prove that you can do anything.  And, if you learn that so early, your life will be better and richer.  It will also prove that my love for you has no boundaries.  You are my Joshua 1:9.  I’m proud of you big boy!  

Love, 

Mom

“Have I not commanded you?  Be strong and courageous.  Do not be terrified; do not be discouraged, for the Lord your God will be with you whereever you go.”  Joshua 1:9

What thirty-nine looks like...

Oh thirty-nine.  You are so fine.  

The more birthdays I have, the more I love them.  I think people have caught on to that because the fanfare seems to grow annually.  It’s a great time for reflection, a great time for a self-check as to who and where you are, and more importantly who you want to be.  I think back to 29, and the tiny house with the one-year old who we were trying desperately to get to sleep at night.  I lived in 1100 square feet of sippy cups and Elmo, oblivious to real problems. And then, a few days after my 29th birthday my mom was diagnosed with cancer.  The jarring and jolting reality would begin a decade of my life that in some ways would become terribly worse before it got much better, and better would sometimes only mean different.  I would question God, be angry at God, try to make deals with Him, and then eventually learn to trust Him in all circumstances, well most, because I’m human.  And He made me anyway so he already knew that part.  

Thirty-nine is certainly not old.  I’m surrounded by those who are both older and younger and in reality I think I’m the same age until they tell me how old they are and I realize that was so 15 years ago.  And when I take a closer look, they had time and cared enough to curl their hair and the wrinkles around my eyes from years of laughter aren’t really there on them.  But, I’m good, because I’ve laughed more.  And, they are sending me pictures of their sonograms and videos of their babies crawling so that’s a bonus.  We are all the same.  We all have struggles and some of those 26 and 29 year olds have it much more together than I do.  And they struggle more than I do, or at least differently.  

Somewhere along this last decade, the little boy that watched Elmo and wouldn’t go to bed is now in middle school.  I’m praying that he walks out everyday and is respectful, loves others, and loves God.  I’m praying that he has good friends and that he makes good choices.  Sometimes I’m praying that God will hold back my hand from his smart mouth or that God will grant me the patience to show him how to “find x” for the tenth time.  This was my exact prayer at about 10 pm on my birthday.  I am so fully invested in his future that I have spent the last decade pushing and encouraging and shoving his introverted little self into the uncomfortable when I just wanted to scoop him up and go home.  But, I know that one day he will find his voice and people will know how funny he is and appreciate how deeply he thinks and how fully he loves.  I know this because I used to be him.  And I do this because in another decade he will be twenty-one and the world will have him.  But, for now, if I need to reassure him at the start line before high-tailing it to the bottom of the hill to see him run, I’ll do it, because he asked me to.  And I can.   

Somewhere else along this decade, I gave birth to what I could best compare to Olaf, the happy snowman from the Frozen movie.  I named her Martha after the other most doggedly determined person I know besides myself and there is no doubt it was perfect.  God’s timing was also perfect as she had no idea how her joy helped to overshadow sorrow as I rocked her to sleep when she was a baby.  She has no idea how her busy little toddler body that would not allow me to stop gave me no choice but to put aside my problems and keep going.  She shares my love for pronto pups, jewelry, magazines, and shoes, but also for people.  She sees only the good and gives her all, but can size up reality faster than you can blink.  For my birthday she wrapped up a bracelet that she had bought with her own money, one that she insisted was for her when we were shopping one day.  She was so proud of herself and I am even more proud of that sparkly little bracelet.  Now, I didn’t make her heart that big, God did, but she teaches me to open mine up just a little more.    

At thirty-nine, what I really am is okay.  Not the kind of complacent okay because you can always improve, but the kind of comfortable-in-my-skin okay.   I am okay with the fact that it’s really hard to change my mind once it’s made up or hurry me up if I’m not ready, the brutal honesty that flies out of my mouth, and the wrinkly skin on the top of my hands that I noticed now puddles like play doh under one of those public restroom hand dryers.  The only thing that really matters is that these hands can hold a little hand when it reaches out and untie a knot it a yo-yo string at a moment’s notice.  I am okay that sometimes I can’t “people” anymore and retreat to Friday nights at home with cheap pizza.  I’m okay that I can’t pretend to like things that I don’t, like camping and Brussels sprouts, unsolicited advice, Metallica, and being cold.  And, I’m totally okay with my decision to abort dorm accommodations for the Hilton if the opportunity should arise.  

I’m okay with getting older because older means living.  Age is just a number but when you work hard for those numbers they mean a lot more.  I looked down once at a stack of medical papers with my name, birthdate, and age printed on them at thirty-three and I was told that was all I would get.  Last week, I ran a race and when I looked up my time, reality hit as I saw a “39” beside my name.  There’s just something about seeing it in print.  When I saw that the other two people that beat me were thirty, I wanted to complain about the 9-year age bracket but I bet their next decade will look nothing like mine.  Let them have that one.  

At thirty-nine, I sure don’t have it all figured out.  In fact, many times my every day life looks a lot like a reality TV show.  But, I’ve learned to hold on to what’s important.  I’ve learned that if something keeps you up at night, then it’s a good idea to do something about it because it very well might be the Holy Spirit.  I’ve learned the true meanings of hope and love and I have very tangible examples of them.  And when the conversation turns to grace, I can usually one-up that too.  I’ve learned to persevere and I see glimpses that my children are learning this too - when your shoe falls off in a race, you keep running; when third grade is hard, you press on.  I’ve learned to look at the perspective of others before I make judgements because most of the time the intent is good, it’s the execution that is poor.  I’ve learned that my kitchen table is the safest ground for discussion, laughs, and solving the world’s problems because the end result is always to turn the lights off and go to bed.  I’ve also learned that a cup of coffee and a decorating magazine can be equal to an attitude adjustment, especially if enjoyed on a patio.  

At thirty-nine I do hard things.  I still don’t want to, but I do them.  I do them and move on to the next thing, sometimes learning from it and sometimes just checking it off the list.  And sometimes buying myself some earrings because hard things deserve earrings.  

Every month, my good friends at CVS send me a little card with my chemo drugs that has funny little sayings like, “may you be happier than a bird with a french fry.”  Maybe they knew it was my birthday, because this month’s quote was from the great Mark Twain and very fittingly said, “Wrinkles merely indicate where smiles have been.”  Bring on the wrinkles.  Bring on the smiles.  Where most people are looking at forty with a side eye, I’m headed for it with a wide-eyed grin. 

One thing’s for sure, I’m going to be one heck of an old lady.  

Thirty-nine and counting....

KJ

that time I was a number...

A few months back, I got a phone call, an email, and a Facebook message all at the same time from somebody at Vanderbilt.  The sight of a 615 number on my phone can send me into a hyper-alert state, so I usually just let them leave a message.  I’m not a quick processor and even though it’s highly doubtful that they are digging through my DNA or have the capability of seeing some new tumor from 200 miles away, somehow my brain thinks that.  Turns out they just wanted my story.  Better yet, they wanted me to write it.  

My story.  

I have a story.  

January 2011, was the first time I wrote something in black and white letters for the world to see.  It was more out of necessity than anything else.  The phone calls and messages got to be too much and my introversion could not take the face to face explanation anymore so I started documenting in the sick people’s digest called Caring Bridge.  I only wrote what I was okay with my children reading one day - they needed to know that I tried.  Most of the time it was a chore for me to put some sort of positive spin on difficulty and defeat.  People read it.  They shared it and then they prayed and they encouraged.  And, I went on about my business and let everybody else formulate their thoughts of how this story was going to go down.  

Five years and almost nine months later, I am still telling this story.  It is still being written.  

The last few months have been filled with seemingly endless busy-ness as I guess life overall just is.  Summer is basically a hamster wheel that never really stops spinning and then rolls right into the start of a new school year.  The beginning of school is always a little rocky, this one in particular because middle school.  It apparently brings on a whole set of emotions that range from excitability to fear to melt down in the span of an hour - here we go!  Smack-dab in the middle of this chaos was scan week.  Impeccable timing some might say, but cancer doesn’t really fit into anyone’s schedule.  There is nothing like a group of medical professionals viewing your insides looking for traces of tumor growth to give you some clarity on life.  

In short, my scans are fine.  Crystal clear.  It actually reads, “no evidence of metastatic disease” because I just read it myself to be sure.  My blood is fine too.  The leukemia cells can’t really be found even at the smallest molecular level so that box of cancer-fighting gold that’s delivered on my doorstep every month is doing it’s job.  This, my friends, is amazing.  And, now I have even more evidence to prove that it is. Physical and numerical in the form of charts, graphs, and percentages.  

I met with my new doctor, Dr. Johnson, who I endearingly refer to in my head as Bill Nye the Science Guy.  We are not the same but kind of.  He is numbers and science trying to stop tumor growth.  I am a mother, trying to make all of the practices and meetings, work, and foster healthy social and emotional growth in kids.  Now, “Bill” and I go way back - on paper and in a lab at least, because he got the pleasure of studying my case from the beginning and analyzing my tumors probably before he met the actual me, bless his heart.   I know this because he told me once about all of my “mutations.”  So we sat in the clinic the other day and discussed scans, new studies that were out, and the effectiveness of these new drugs.  He asked me if I had read the recent five year results of the study I was on.  I replied with a simple “no,” but in my head I was thinking of how when those results came out, I was probably sitting at the baseball park, or running carpool to dance lessons and maybe slightly embarrassed that I didn’t even know the results came out.  In summary, the drug that I was on had about a 30% response rate for what’s called progression free survival.  So, it works in about 1/3 of people who don’t grow new cancer while they are on it.  Not me.  I’m not even in the 1/3 because I grew a big fat spinal tumor while I was on it. Pretty sure they didn’t measure that.  

It took me a few days but I decided to look up those study results and read them for myself.  I did so on Saturday morning while I was making scrambled eggs for my kids.  So, I’m standing there in the kitchen trying to make sense of it all and the truth is that it doesn’t make sense. Now, I’m not a numbers person.  I can’t even do a spreadsheet.  They give me anxiety with the cells and rows and whatnot.  I was standing there stirring eggs and reading numbers that basically accounted for my life.  It is just hard to wrap my mind around it.  I came down to the side-effects graph and there’s stuff listed like nausea, and rash, and then there’s this one tiny fraction of 1/17 that contracted another “neoplasm” (Fancy Nancy for cancer) called chronic myeloid leukemia.  So there I am.  I am a number.  A single number in a graph on a chart in a study.

What actually came to my mind when I was reading this is the verse, Luke 12:7 - “Indeed, the very hairs of your head are all numbered.  Don’t be afraid; you are worth more than many sparrows.”  When I was a child I used to think a lot about that verse as I brushed my hair because clearly I had a very literal sense of it’s meaning.  But, now it seemed crystal clear.  God knows me.  I matter.  He not only knows how much hair I have, don’t have, and how many are gray, but he values me enough to allow me to open and close so many doors to lead to a clinical research study, to lead to another major cancer, to lead to a chart-full of data that I would read years later while standing in my kitchen and it would shout my worth to Him in black and white and leave my crying in my kid’s eggs. 

What that number also doesn’t say is that I am very much alive.  I am very much walking around and shuffling my kids here and there to give them the best life possible, all the while planning in my head if that this scan is not what I hope, how I will schedule cancer treatment with church activities, play practice, cross country, dance, baseball, and homework.  What it also doesn’t say is what kind of life cancer has taught me to live fully and completely and in four month increments of time.  What kind of responsibility defying odds has brought for me.  What kind of perspective on life I have been given, what kind of empathy I have for those who struggle.  I spend time in prayer for friends and strangers who have cancer and are fighting because I know the fight.  I attend a funeral of a little boy who I grew to love and who possibly left this earth because “his body could no longer contain his spirit”  all the while thinking how hard I’ve tried to hold onto every aspect of my children’s lives and cannot fathom how these parents will go on.  I comfort my middle schooler, holding back laughter, because change is hard and he actually exclaims with dramatic flair as I shove him out of the car on the first day, “I’m going to die!”  I encourage my daughter and she tries out for the school play but remind her that it’s just a play.  I hold them tight, I put my fingers through their reddish hair and love how their lanky legs peek further under their shorts as they grow.  

I fully know that I am not exempt from the stuff of life but have to keep my eye on the bigger picture.  On the very same day that I spent 6 hours driving and 3 hours in a cold sterile machine with an IV in my arm, I also spent half of what my car was worth on repairs, drove from a cancer clinic directly to a third grade curriculum meeting, picked my son up from cross country, and went to two different office supply stores to find a much needed locker shelf for my 6th grader before going through the Chick-fil-A drive through for dinner at 9:00.  I had to do none of this really.  I could have declared myself finished for the day and gone to bed, but in a day where I control nothing, this craziness gave me a little control.  And, quite simply, I can.  There was a time when people sent me pictures of my children reading at school because I couldn’t be there to see them so now that I can, I will.  It doesn’t stop me from being annoyed at the lady in curriculum night with the big PTA letters on her shirt on asking if she has to pay a workbook fee for our free and fabulous public school, or the other lady asking how her child will be honored if he makes straight A’s.  Instead it causes me to think about what I want for my two children who to the world are pretty average and my answer is really just happy and kind.  

And that story?  Well, I wrote the part that has been written for Vanderbilt because they asked me to, realizing later that I wrote it just as much for myself.  I deliberated over it for weeks because it’s a lot for 1700 words. I even left out the third cancer because sometimes too much is just too much, and then sent it to a friend to edit for me.  Vanderbilt sent a fancy photographer with real equipment to my house last spring.  We tried to look our best and clean up our act around here for at least that hour.  The article came out and was published on social media and in their magazine.  We watched as it was liked and shared and people commented.  Strangers commented on how it gave them hope, and gave God the credit.  Exactly what I had hoped would happen. 

I was back in that cancer clinic the other day that I’ve walked into and out of so many times. Some of them broken, full of cancer, full of defeat, searching for joy, searching for hope, some of them not walking at all, some of them in disbelief that the diseases I’m fighting are no longer there.  And this day, I walked out holding that magazine, with my smiling face on a full page, playing in a sandbox.  No sign of cancer in my body.  I just can’t help but laugh.  Who would have ever guessed this is where it would go?  So, what do you do with that?  Well, you continue life with perspective, you eat lunch with your best friend, and you drive through Dairy Queen for a blizzard on the way home so you can pull in the driveway in time to pick up your kid from practice.  You sing a few verses of “Great is Thy Faithfulness” because it is.  His mercies are new every day.  Even if the day hadn’t been this way, He is still faithful.   

As I toasted Stephen to a good day with that Oreo Blizzard, his watch slid down and  I saw the tattoo - my name and then names of our kids in a circle around his wrist.  He didn’t have to tattoo it on his arm for me to know that I married a man who’s story was written to collide with mine and complete me as a person, to write our story together.  As sure as that tattoo on his wrist, he intends to keep his little circle of people in tact and together.  It’s a physical reminder of his love that came out of what was the absolute pit of our lives.  No doubt that my story is still being written, as all of ours are.  God writes our stories in phases of our lives and He counts the numbers of hairs on our heads.  He doesn’t reveal what is to come because all of it is in His timing.  Cancer is not what I wanted.  It wasn’t in my plan.  It was in His.  It has taught me patience, empathy, kindness, and perseverance, how to love more deeply and fully.  

I have no idea what is yet to be written, none of us do, but if our lives end because our bodies can no longer contain our spirits, the world will be a much better place. 

“Great is Thy faithfulness! 

Great is Thy faithfulness! 

Morning by morning new mercies I see;

All I have needed Thy hand hath provided - 

Great is Thy faithfulness,

Lord, unto me!”

Jesus. Science. Grace. 

Love, 

Kimberly