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"