thirteen

Dear Bailey, 

You are thirteen today - I can hardly believe it!  Every year when I write these I go back to that little tiny squishy baby boy that I held for the first time and wasn’t quite sure what to do.  I knew instantly that I loved you but I didn’t know how much you (and later your sister) would redefine love for me.  Every year I also write about the new things you did and learned and although this year has looked very different, I am certain that what you have learned will carry you through the rest of your life.   

Just a few days after you turned twelve we found that nasty tumor in your leg.  You and I spent that first day together trying to be brave but I think you were braver than me.  You told me that you were born to fight this and I do believe that you were.  The day we walked into St. Jude you were wearing a Superman shirt, maybe it was a coincidence, but it seems that you just might have always been  Superman after all.  I watched you count to three the first time they stuck your arm, never flinching, and I knew then that you had been storing all of your brave since you were born for this very time. 

I watched you go through your first scan machines, your first X-rays and remembered how I felt the first times I did the same thing.  I knew you were scared but you laid there as I watched the timer count down and talked to you over that loud machine.  I watched your face as the doctors talked to you and I knew that you understood what you were up against, yet you stayed still and calm.  I wanted to pick you up and bolt but we both managed to stay.  I wanted to freak out I saw that big line sticking out of your chest but you didn’t so I didn’t either.  You figured out how to walk on your crutches with that heavy brace so fast I couldn’t keep up with you.  

I watched you as you faced every round of chemo - almost forty weeks because of all those delays - all of those awful mouth sores, that fever that we thought would never end, that leg infection.  I watched you carry that backpack everyday full of your fake food, your wound vac, and even though I carried it a lot, you never sat down.  I watched your beautiful hair fall to the patio as I shaved it which made me sad but then when I saw what a cute bald kid you were and how much of your face I could see, I loved it.  I have so loved kissing that bald head for the last year but I am loving those soft sprigs of auburn hair that are back even more.  I was also glad that your teeth came in straight since that’s the first thing you could see when your hair was gone!  

You taught me a lot of things this year - I may have even learned more than you. I have learned to be more trusting - in people, but mostly in God because of you.  The day after Easter when we sat in the waiting room and waited for seven hours for your big surgery, I had to trust that you would be ok.  And you were.  You came back to me without that tumor and with a shiny new titanium bone in your leg.  I have never been so happy to kiss your face.  And although that new bone leg has caused you a lot of pain and hard work, when it’s all said and done, those scars will tell stories of adversity that will be hard for anyone to top.    

You taught me how to speak up for you and now I watch you speak up for yourself.  You taught me how to be patient, even though I thought that’s something I already knew, I found out that I really didn’t.  You have taught me that really the only thing that matters is that I have you, Kate, and Daddy, and everything else will work itself out.  By watching you, my eyes have been opened to how the world views people who are sick or different because you have only wanted to be seen as capable.  We may have made a game out of people staring in public at your crutches, brace, and bald head (like that one weird guy at Graceland who kept asking if you had a football injury), but it really made me think more about how people feel and how their mothers feel.  Sometimes I feel like I need to elbow people out of the way in a crowd but I look back at you and realize that you have it together, way more than me.  Either way, I’ll always be happy to elbow them.  

You have also taught me about YouTube and I’ve watched so many videos that I feel like I know the people who make them.  Because of you, I know about the sneaker industry, collabs, and Supreme drops, and of course dogs. I have learned about cars too, or at least you’ve tried to teach me so thanks for being patient when the only thing I really know is what color they are.  You have named every cool car on the interstate in our countless trips downtown and can tell their make and model from miles away, and even in the dark by the shape of their tail lights.  I also learned that you like watching people as much as I do.  This is a true gift that will provide you entertainment for the rest of your life.  We’ve spent hours on those benches outside St. Jude watching the tourists take pictures and watching people mill around in and out of the hospital.  Your impersonations are pretty impressive too.  

In spite of all the hard things this year, you are still the same you.  You have always had the ability to notice every detail in your surroundings, like when you were three and noticed a fish was missing from your preschool.  When you recall things to people that they didn’t think you heard, I love seeing the look on their faces. Sometimes people underestimate how smart and wise you are, but there’s nothing wrong with the element of surprise because it teaches people to be more considerate.  Your memory is better than anyone I have ever met.  There are lots of things I would like for you to forget, but I know that those things will eventually help you be stronger and more compassionate. You are stubborn which really just means that you never give up.  You are sensitive and thoughtful, making sure no one gets left out and I’m pretty sure you’ll always take care of your mama.  You have managed to steal the hearts of countless nurses with your honesty, wit, and charm, and the way you flash that mischievous smile that’s hidden sometimes under your serious face.  You are loyal to the things and people you love - your family, your friends, the Mississippi State bulldogs, and of course, your dogs.   You can pretty much talk me into anything, which is how I ended up chasing this little girl dog around the house.     

It may not feel like you got to see and do much, which is entirely true, but you have accomplished more this year than most people accomplish in a lifetime.  Your perseverance has inspired hundreds of people to be strong and courageous like you.   You have learned how to speak up and tell people what you think, ask the right questions, and make choices even when your choices are limited.  You are honest and straightforward and so funny, which people figure out when they stick around long enough and listen close enough.  You have taught us all to be more understanding of others who have it worse than we do and that smile of yours has opened up the hearts of more people than you will ever know.  You said the other day that people don't know how lucky they are.  This is so true, but I told you that I know how lucky I am and that has made me look at life differently for the last seven years.  I hope that you will too.  

Twelve was not what we expected and much harder than I wanted it to be for you.  I had hoped that you would be wading through the waters of the awkward preteen years in seventh grade instead of sitting at the kitchen table with your schoolbooks or in a hospital, but I sure have loved having you close to me.  That’s the part I would never want to give back.  

Thirteen, my boy, it will be different.  You have already done hard things and you are wise beyond what most thirteen year olds know.  That will help you in all the weirdness of the teenage years.  You are so capable of anything you want to do and you carry with you something so very special because of what you have endured.  I wish for you lots of things this year, but mostly I wish for you to be just a regular thirteen year old boy. I wish for you to get dirty, make mistakes so you can learn from them, and be goofy with your friends.  I wish for you to travel, go fishing, go to school, and ride bikes.  I wish for you to worry about how your hair looks and your math tests.  I wish for you to dream big.  

I love you more than you could ever imagine.  

You will always be my hero.  

Happy Birthday!

Mom

January 2017

January 2018

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