nine is so fine!

Dear my Martha Kate,

Today you are nine.   And let me tell you, you make nine look fine!  On this very day nine years ago, I looked over at you and instantly fell in love for the third time in my life.  (The first two times were your daddy, then your brother.  I love you just as much if you're wondering).   You were tiny and pink and crying like you had a point to get across.  I think it was that you were cold and wanted your mama because as soon as I held you you stopped and looked straight at me.  I still love to scoop you up and hold you.  I'm so glad God made you little so I can curl you right up in my lap.  It is still one of your favorite places.

You have grown so much this year!  Your big front teeth have grown in and you've lost a couple more too.  Your hair is longer and it makes you look a little older but it sure is pretty.  When the sun shines on it, it looks like a new copper penny.  Your brother once told you that your hair was the color of a chicken nugget!  (He was only three - we'll forgive him).

You are full of adventure and spirit.  You love to go places and see new things and I'm going to have to remind myself of this the older you get and the more I want to keep you right here with me.  This year we went to New York City.  It was a real adventure and we still talk about it.  You loved the Statue of Liberty and climbing on all of the statues in Central Park.  I loved watching the wonder of it all through your eyes.  You loved everything but the time we got caught walking in a thunderstorm and got soaked. You were just plain mad about that!  We had a great time shopping and you and I saw our first Broadway play.  We also ate a lot of sweets.  Your favorite were the macaroons, just like they have in Paris, you said.  I think you loved the hotel as much as anything else.  I like hotels too, so I get it.

You are so much fun to watch, Kate.  Sometimes, I just sit and watch you play or stop at the window
when your outside and watch you swing.  You are always singing, or talking, or imagining while you play.  I love your little world so much.  When you are outside, you are carefree and happy, like that's exactly where you belong.  After you were born, you cried unless we took you outside.  You were trying to tell us that's where you were happiest.  I was thankful you were born in May because at least the weather was nice for sitting outside on the swing.  You love the water as much as swinging.  At the first sign of warm weather, you start talking about swimming pools and oceans and swimsuits.  Sometimes when we go to buy plants at Lowes, you get a little distracted at the water fountains.  I let you play there as long as I can because they are kind of fascinating.  When you were a baby, you used to climb up on the counter and turn the water on to play in it.  We didn't think you could reach the
faucet, but we were wrong.  In the spring, when the flowers start blooming, you get so excited, just like I do.  We passed a field of yellow wildflowers the other day and you said, "Oh, I could stay there all day picking those!"  One of your favorite places to go is the garden at church where there is a brick with Nana's name on it.  You like to pick and blow all the dandelions all the way down the hill to it.  She would love that so much.

You have always been busy, and you sure keep me busy, but I love it.  Just like Olivia's mom says in the book we read - "You really wear me out, but I love you anyway." You have so many good ideas that sometimes it's hard for you to get them all done.  You spend a lot of time cutting paper and making things - really cool things like houses for small critters and cards and pictures.  I spend a lot of time picking sequins and paper out of the carpet, but it makes me think of you when I'm doing it.  You can even make purses from my hosta leaves by sewing them together with monkey grass.  You also love to read and you've gotten really good at writing this year too!  I have always said you use your right brain and that's amazing.  It's hard for some people to sing and dance and to be on stage and think of cool things to make and draw, but not for you.  It all comes so easily for you because you're brain is not thinking of all the rules and the boundaries in life.  Your brain doesn't see limits, it only sees possibility.

I love that you like to try lots of different things like playing soccer, and running, Girl Scouts, being
in plays, and singing at church.  You always do your very best and that makes me so proud.  This was your first year to run track and you did really well!  I didn't know your little legs could move so fast and you came back to the finish line smiling.  You're pretty much always smiling.  It's kind of contagious.  We joke that you are a cross between Olaf the happy snowman and Buddy the elf.  You make the most of everything and can make even the most ordinary things pretty fun - like trying on shoes.  We spent an hour in Target the other day trying on all the heels and using the aisle as a runway.  I just sat and watched you and soaked it up.  You've taught me to sit and watch and soak up more things in life and I am thankful for that.  Besides, it's too hard to hurry you up so I may as well wait until you are ready.  You've also taught me to say yes more especially when I know it's saying yes to something messy.  It's always worth my yes when I see how much fun you have or what you have made.  I even say yes to lipstick sometimes but we made a deal that it's only for inside the house.  After all, you're only nine!

You also know how to get right to the point and size up a situation with pure honesty.  I get a little nervous at what you might say sometimes but whatever it is will be the absolute truth.  You have a wonderful ability to avoid drama and walk away from things that make you uncomfortable. You are not afraid to call somebody out on something either.  You like for people to do the right thing and for people to be treated fairly.  This makes you a good friend and will also help you make wise choices as you grow up.

You are a great helper.  You are really good at looking for ways to help me at home.  You are also really good at noticing when other people need help.  I watched you at your soccer game help a girl from the other team get up when she fell down and I watched you give up your turn to throw the ball in so your friend could have a turn, and give away your gatorade to your friend's little sister because she was crying.  I was more proud of that than the goals your scored.  I always say that I want you and Bailey to be happy and kind and to love God and love people.  You are doing really well at all of those things.

Sometimes things in our lives make us have to be patient and sacrifice and wait your turn.  I am proud of you for how patient you have been when life is not always easy.  God made you strong and tough but sweet and loving.  Oh so loving.  He has given you exactly what you need to be who you are.  I am not the only one who sees it.  Other people see it too.  They see how resilient you are and how full of joy you are and they wonder how you could be so happy.  I tell them it's because you are so loved and because God made you that way.

I used to sing a song at church when I was little called "I am a promise."  You are a promise - a great big bundle of potentiality with a capital "P" and I'm so glad you are mine.  You are my very best girl and I love you very much, my Martha Kate!

You are nine and you are fine!

I love you!

Mommy

be like Jochebed

“A mother’s love for her child is like nothing else in the world.  It knows no law, no pity.  It dares all things and crushes down remorselessly all that stands in its path.”  - Agatha Christie

I saw this quote earlier this week and it has resounded over and over in my head as words often do.  I became a mother twelve years ago.  Twelve years and eleven days later I became a mother of a child with cancer.  I think that alone will spur the remorseless crushing. 

I currently spend the large percent of my waking hours in a children’s cancer hospital.  Day after day and waiting room after waiting room, I haul a lot of stuff around and then I sit and wait and do some talking before I haul a lot of stuff again to another place.  I call it the cancer conveyer belt and we ride it until they tell us we can go home.  I’ve taken to people watching more that ever, and I’ll assure you that if you are looking for the mothers to whom Ms. Christie is referring, I know where to find them.  I see the same people over and over - like when you’re in college passing people in the hallway on the way to the same class and give the solidarity nod, but have no real business striking up a convo until your paths collide and it would otherwise be awkward.  Plus a lot of them don’t speak English.  Even though I live a few miles away, most people live thousands and I’ve entered a foreign country that I wasn’t planning on visiting.  

Inside the walls, the norm reference is completely different.  No one here is looking into summer camps, worried about competitive tryouts, or planning pool parties.  There are these little green barf bags on the wall that are everywhere - as prominent as napkin dispensers in fast food restaurants and more prominent than fire extinguishers. Fortunately for me, my built in mom GPS tracking device has paid off here because I know exactly where the dispensers are when we need one.  Bailey is as observant as I am and he’s taken to memorizing the names on the overhead pager.  He enjoys repeating the overhead pages to me on the way home:  “So-and-so to physical therapy...”  “so-and-so to the medicine room...”  He even tells me who they are.  “Hey mama, that’s the girl that always brings all the food in the waiting room and is wrapped up in a blanket like that chemo killed her.”  There’s lots of common denominators - bald heads, backpacks with IV lines hanging out of them, lines hanging out of little tiny chests, and masks covering everything but the eyes.  The mamas are giving the meds, flushing the lines, cutting the chicken nuggets, and charging the entertainment devices all at the same time.  And we are all sleeping on plastic couches in our off hours.  

Motherhood took a turn this year for sure.  There is not a parenting book out there with a chapter that discusses what to do in the event of catastrophic illness.  But, what you do is the exact same thing.  You mother.  You put aside all that you want and need, and you take care of your child.  And, when you get home from that, you take care of your healthy child who missed you and needs your face and your arms.  

I’ve had some major revelations as a mother over the past several months.  First of all, surviving to get to this point may have only been the half of it.  Second of all, my instinct and awareness of their needs is so heightened that I may as well be telepathic.  And third, I have very little capacity in my brain for anything other than managing the aforementioned.  

It was by the hardest that we completed the ten weeks of required chemo before the surgery.  Even on the so called breaks, we ended up in the hospital for fever, and mouth sores, and so much weight loss that I had to learn to feed my child with an IV bag of fluids that I have mixed everyday, hooked to a pump, and stuffed in a backpack for him to haul around.  I’ve stared blankly and helplessly into space more than ever in the past four months and thought, “what in the actual world are we doing here.”  I sat staring at that fragile profile and finally just crawled into that hospital bed and begged God to make that fake liquid food, that blood that somebody donated, and those platelets that were once in somebody else’s veins work.  He did.  

Over and over in the last four months we are reminded that we are not in control.  We can ask all the questions, do all the things, and worry but it’s useless because He is running this show.  For the last five or so years, I’ve lived by the serenity prayer and I currently find reciting the beatitudes in my head rather useful.  

The week of Easter got particularly exciting.  Both Bailey’s scans and my scans happened to fall on the same week - this is not a recommended plan for those who may be considering this option.  Dual family cancer is tricky.  Bailey was particularly weak, anxious, and pukey which we discovered midweek was due to anemia and he needed blood.  After an eight hour day of his scans, I realized that the poor dog had a mangled mouth and displaced teeth from an unfortunate dog bite through the fence the week before.  Having virtually no time for the repair of pooch gums, I called my vet and brother and asked him to work us in.  I checked Kate out of school for an “appointment” and drove ninety miles to have my brother do some emergency dental work on the dog.  On the way, Bailey started puking, so I handed him a barf bag and kept driving.  Kate was reading a book and she never looked up.  I stopped at the gas station to unhook his IV line and Oscar started running around the front seat and going nuts as clearly his mangled mouth did not inhibit his automobile behavior.  All I could do was laugh.  The kids got a real charge out of the vet field trip and watching the poor dog wake up from anesthesia.  He’s fine, a few teeth missing, but fine, and we’ve all moved on.  Bailey also got a blood transfusion the next day and I drove to Nashville for my own scans which I had already declared to the Almighty that they were fine because I did not have time for them not to be.  And they are.  

Now in all this chaos, I had been trying hard to complete a forty-seven day Easter devotional.  It was now five days before Easter and I was forty-six days behind.  This is not necessarily due to the cancer, I rolled like this in college and all through life and while this procrastination is not my favorite quality, the eleventh hour is my jam.  So I retreated to my patio every night that week to read the redemption story in the pitch black dark.  It was quiet and the only place around here without syringes or medical supplies which really alter my focus.  Easter is my favorite holiday and I was trying real hard to by Eastery.  The more I read, I felt strongly that it was not coincidental that this tumor be removed on Easter Monday, a symbol of Bailey’s own redemption.  I also calculated that we might actually all make it to church on Easter and had bargained with pharmacist to have that fake food down to night only so that backpack wouldn’t be in my Easter pictures.

However, on Friday everything was a go but the platelets.  They were entirely too low and unlikely to come up by Monday.  Bailey was looking good and seemed less scared and anxious than we thought he would be about surgery so I wanted it to get on with it.  We had everybody this side of the Mississippi praying for platelets and we made it to church as a family, wearing the clothes we had bought for the Bahamas trip that we missed, which was also incidentally scheduled for Easter Monday.  

By Monday morning, Bailey’s platelets had tripled and I was reminded of the full presence of the Holy Spirit.  We stood in a circle and prayed for God’s protection and healing grace and then handed our son over to be held by surgeons for the next seven hours as they removed the tumor and replaced twenty one centimeters of Bailey’s bone with a titanium prosthesis complete with working knee.  Those surgeons may never know how they were prayed for that day.  Just as they day that the surgeon removed the tumor in my spine six years earlier was prayed for.  What people did not know is that the prayers six years ago would lead to a miracle which would lead to me being able to kiss my son on the operating table so his own redemption story could be written.  

“Consider his scars and hear him say, ‘These I gained from loving you.’” was the quote that stood out on my devotional three days before Easter.  He gained his scars from loving us and we gained our scars because He loves us.  

I would love to say that every day for the last four weeks or so has gone smoothly and just as planned following Bailey’s surgery but that would be untrue.  By now, it’s evident that we do nothing easy so we have once again checked off all the complications.  What has unfolded in the last four weeks is nothing short of a hot mess.  Bailey developed blisters from the swelling all over his leg, his incision did not heal properly resulting in a large and ugly open wound, his nerves were compressed from the trauma and swelling and stretching and four weeks later he still cannot move his ankle or toes.  He has had constant nerve pain that shoots through his leg all of the time which caused him to scream all night for two weeks straight.  We played pharmacy all night long with no actual clue as to what we were doing and at 2am we were out of scheduled drugs and it was a crapshoot.  Our days have been spent at appointments trying to sort through the issues on no sleep and our evenings and weekends trying to make sure that we miss none of Kate’s end of the year activities.  Things are slowly coming together, chemo has restarted, the sports seasons wrapped up, he had another surgery for the wound last week, and most importantly we left the tumor at St. Jude.  

In the midst of such chaos it is hard to find rhythm for sure.  It is hard to throw all the balls in the air and get something to land.  It is hard to find control when you have none.  It is hard to trust and to remain faithful and patient.  But that’s what motherhood calls for.   It calls us to do what is required.  Sometimes more is required, sometimes less.  In this season in life, what is required of me is that I nurture and love and be present as much as possible.  This means that I spend the night at the hospital watching chemo pour into one child’s veins, wake up, switch with my husband, and go straight to a track meet followed by a soccer game and take pictures.  This requires me to know what medications to give in what order, mix IV nutrition, and serve up a casserole while reviewing math tests.  This requires me to talk my anxious boy off the ledge and to divert my daughter’s hair crisis at the same time.  This requires me make lunches, sign folders, to be interested in every dog known to man, every YouTube sensation, every new video game, and to highlight the strengths and humor of my shy but brave boy to all the medical professionals.  It requires me to have tea parties, to advocate, to enjoy Girl Scout bridging ceremonies, and make cheesecake out of American Girl cookbooks.  It requires me to hold barf bags, and hold hands, and hold tightly to the promises of God.  

Today on Mother’s Day, I woke up to the big baby on the building (that’s what Bailey calls the St. Jude logo) outside my window.  I woke up on a plastic couch, ten feet away from my son who needs his mother.  I woke up reminded of some of the great mothers, my grandmothers, my mother-in-law, my aunts, and my own for one who although not here is always present.  She is present in the smile and joy of my little girl, in my hands that look like hers, and in the random curl that has formed in the back of my hair like it did in hers when she was almost forty.  She is there and my very image of her currently is that she is sitting at the right hand of the Almighty tapping his knee and wagging her teacher finger to make sure that He’s taking care of her grandson.  If anybody would try to politely boss Jesus it would be my mother.  

I woke up thinking about how God has surrounded me with mothers - strong ones of like faith. I have the gift of a circle of mothers who are raising a bunch of good kids with good hearts who will do amazing things.  We stand together and even when our kids have differences they are forced to figure it out because our bond of motherhood and friendship is much stronger.  These mothers also always have room for one more kid and my youngest is truly everybody’s little sister.  I thought about my younger friends who just became mothers of babies that I prayed for and how they will now know true joy and heartbreak and joy sometimes in the same hour.  I thought about my friend who recently left this earth too soon but whose legacy lives on in her two greatest assets.  I thought about the mothers who are getting second chances because of scientific research.  And the mothers of children with special needs and chronic illnesses, the ones whose living rooms I’ve sat in with all the medical supplies and become their friends.  And, now I’ve joined them.  

And for some reason, I woke up thinking about Jochebed. Well, I didn’t know her name actually, so I looked it up.  But, she was Moses’s mom.  Kate likes to read the story of Moses because she loves the idea of the baby in the basket in the water.  I was thinking about how smart and brave she was to put Moses in the water, put his sister nearby, and trust that God would handle the rest so he could come back to her.  I currently feel like I’m putting my own son in the water - sitting there watching chemo drip in him, watching someone else’s blood drip in him, watching him in ICU, waiting in surgery waiting rooms for him to come back to me.  I want to be like Jochebed.  I’m trying to be like Jochebed.  But I am just me.  

What I am is totally in love with my children.  God has trusted me with them, I have fought to be here for them, and I will fight to keep them.  In the hard, I see glimpses of good.  I see a boy who has never been confident in much, now defining adversity.  I see a little girl who makes the most of having one parent all to herself and who is continuing to thrive in spite of it all.  

I am thankful that His mercies are new and that when it’s all too much I can go to bed and start over the next day.  I am thankful for the grace that helps me maintain my composure and keeps me from running out of some of those exam rooms or letting ugly words fly out of my mouth, or doing more remorseless crushing than necessary.  I am thankful for my husband who will always be nicer than me, will always talk so I don’t have to form words, and who gave me motherhood because regardless of what is required, there is absolutely no greater gift.  

Happy Mother's Day!  

Kimberly

“The Lord is my strength and my shield; my heart trusted Him and I am helped; therefore my heart greatly rejoices, and with my song I will praise Him.”  Psalm 28:7

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