motherhood and the sharp right turn

I walked upstairs from my coffee yesterday morning to take a shower and stopped at the top of the stairs after I caught a glimpse of Bailey sleeping.  I took two more steps and saw my Kate with her wild hair barely peeking out and her little tornado body swirled up in the sheets.  Sleeping children are irresistible.  I guess that never changes.  

At thirteen and nine, maybe even more so.  Bailey was shirtless, so I could see his body and the pink indention on the right side of his chest, scarred over now, but still fresh enough to not have faded.  The memory of his lifeline forever branded.  Night after night I prayed for his body to sleep, and walked in all hours to make sure that his chest was still rising and falling.  I pulled tubing out from under the covers, pushing buttons on a pump trying to keep it from alarming, hooked up more medicine, more fluid, more food.  All night long I set my alarm but mostly didn’t need to because instinct woke me up. I spent hours on the floor in his room trying to open my eyes and read numbers by the flashlight on my phone so I wouldn’t wake him up if he was asleep.  And those were the good nights. Some nights the pain couldn’t be comforted and the vomiting was uncontrollable and we laid together on the floor in his room until the sun came up.  

I guess you’d say my journey in motherhood took a sharp right turn last year.  I had no intention of entering the world that I found myself in.  None.  I did not want to try that one out.  I’ve done cancer.  I already had the perspective of the sanctity and fragility of life.  I watched my best friend slip slowly into the arms of Jesus.  She happened to also be my mother.   I prayed that God would never allow my children to feel that emptiness.  I did a terrible job of helping them grieve because I could not come out of my own grief.  I could not answer his questions about what it felt like when my four year old asked on the way to school how it felt when she got her wings.   I could not call her about the random rash on my baby, the decorating question, or what she put in her cornbread.  Yet, it was enough.  She had taught me how to mother and the rest I’d figure out.  I did not know that her death would be a catalyst for my own survival.  

I mothered two babies and clung to life and had experimental drugs poured through my veins in order to make peanut butter sandwiches and sit at t-ball games.  I put my toddler’s smocked dresses on for church while I propped myself against the bed wondering how many more Sundays I would be able to dress her.  I bathed him barely able to get up from the bathroom floor.  They had no idea how their chubby little baby bodies fueled mine to keep fighting.  My spine was cut open in a last ditch effort so I could hang another birthday sign, make it to kindergarten graduation, French braid her hair, and watch him jump off the diving board.  I woke up from surgery, honestly surprised but with some sense that my purpose on earth was not complete.  I told God I do whatever He wanted if I could be here for them.   

And in January of last year, there I sat nearly five years out of my own miracle and staring at my son on a paper table.  I saw the doctor’s mouth moving as he explained the chemo schedule and the side effects, Bailey’s head down staring at the floor.  I couldn’t listen to the words so I started calculating the bills in my head and how on earth we would manage when I quit working which from the looks of the schedule I was handed, appeared to be exactly tomorrow.  Math seemed easier.  Then I heard it.  I heard nothing else in the room on January 25, 2017, except for one sentence, 

“I will provide.”  

As comforting as those words were, the part that I could not see is the provision - the how.  What I could see is the tiny pieces of the motherhood I had been stacking up over the last twelve years, the ways that He provided time after time, the unlikely miracles.  He didn’t count me out, instead He taught me to trust enough that when everything is stripped away and all you have is Jesus to rely on, that will be all that you need. 

Day after day last year, I sat in the left corner of a plastic couch in a pediatric cancer hospital, wrapped in my cardigan.  My scene was mostly my bald and sick little boy under a pile of blankets and most of the time he was the exact same color as the blankets.  Sometimes I had a view of the city or the parking garage or the construction site, but little could distract from what was in front of me.  The sun came up and went down and if it wasn’t for that, I would have had no idea that a day had passed.  The passing of time there is the strangest thing - like it never passed at all and the only sounds were the whir in the machine pump and him calling my name which happened about every time I thought about reading a book or turning on the TV.  I mostly walked in circles in the room, straightening blankets, stacking things up, refolding clothes - anything mindless.  I did the same thing at home.  I had a thousand things and projects that I considered starting but I couldn’t because my brain wouldn’t function on the minimal sleep except for what was needed and that was to give his medicine, fill his IV bags, organize his supplies, flush his line, or try a thousand times to get him to eat.  I tiptoed in his room every morning to give him medicine in his line before he woke up to keep him from vomiting but it never helped.  Every day greeted him the same way and every day I wanted him to be able to lie in his bed and sleep but I had to dress him and get him in the car for another appointment or blood or platelets or whatever the day threw at us. 

My only escape from the hospital was the three hours in the evening when Stephen came in so I could go home and see my other baby.  In the middle of the summer I rolled down all the windows and drove in the blasting heat to feel the warmth on my skin and breath the unsterile air.  I could not wait to get to Kate, to hold her, to smell her, and to hear her chatter.  Those couple of hours were not a break, but my only chances to be her mother.  She mostly wanted to just play and be home and I felt guilty that I couldn’t give her that.  Our time together was rushed with bath and dinner and loading back up to go to the hospital.   She was so patient and never complained but would ask how many more nights until I was home and would count down to Fridays when it was just her and me.  She longed for my undivided attention and I truly longed for hers too.  We cherished Fridays with whatever dinner she asked for and she curled in bed with me to watch whatever show she chose and I enveloped myself in real sheets on a real bed.  I felt like more of a shell of a person giving her only the leftovers and I hoped she didn’t notice.  I don’t think she cared, honestly, because my presence was all she needed and I was present.  I sent her to every activity I could to keep her busy but sometimes she would just ask to sit with me at the hospital for the day so she didn’t have to be shuffled around.  I found notes from her tucked into pages of the books I was reading, into my luggage, left on the notepads beside my plastic couch.  I wrote her ones too, counting down days until I could give her me again.  

I lived a complete double life and emerged and immersed over and over again from the well child to the sick child, from packing the school lunches and signing folders to filling IV bags and giving medicines.  Bailey had every complication from that surgery that it seemed like was listed - wound healing issues, nerve pain, nerve damage, loss of movement.  We sorted through the list of problems, realizing some may not ever resolve and watched him sort through them in his own brain, which led to frustration and anger as he listed what he may never do again as he looked down at his foot that he could no longer feel or move. 

And, then the infection.  Bacteria invaded his sick body and leg and sent us down yet another path.  Nine days straight in the hospital with no real answer except a refrigerator full of IV antibiotics and hope for the best.  I ran out of words and thoughts as the next six months were full of surgeries, more cultures, more surgeries, and finishing chemo which was delayed more and more each time because he couldn’t clear the last one from his body.  I kept moving our finish day on the calendar until it was so scribbled over that it couldn’t be read and I put my cute planner on the shelf and went with whatever the days threw at me. 

School started and I remember someone asking how our summer was.  I stared blankly.  I wanted to tell her I didn’t even remember the seasons changing for the last eight months and the last thing I recall was winter and my sweet boy was blowing out twelve birthday candles and then week I was staring at a fuzzy white cancerous cloud around his once perfect bone.  I wanted to tell her that I combed lice out of my daughter’s hair (that certainly didn’t come from all the bald people in my house) while I filled bags of fluid with nutrition and tried to clean the vomit out of my rugs.  I wanted to say that sending her to school with her big brother at home needing my full time care seemed completely unfair and unreal but it was my only option and she deserved a break from the mess we were in anyway.  But, I smiled and said, “we got through it.”  

That’s pretty much my answer to it all if I look back at anything.  But, here’s the other thing.  We got through it because Jesus has led us through it.  And, though I’ve been unable to see the hours in front of me or the actual ways He would provide and lead us, everyday I wake up and think,

 “I got through that.”  

No one has been more surprised than me to see the sun actually come up some mornings - a new day, wiped clean from the one before.  His mercies are new.  I think my view of God as a child, and maybe most of my life was more of a scorekeeper, counting my sin and maybe I had a healthy fear.  Motherhood and cancer has changed that and I have for certain found the God of grace and mercy in all five of the cancer clinics I’ve sat in.  The absolute only reason for my survival and for the survival of my son is His grace.  He is all I have, our only driving force, and when I forgot how to pray, He knew the desires of my heart.  

The past eighteen months, I’ve clung tightly to His words, “I will provide.”  And, though I thought at the very moment I heard them that He meant we would have all of the material things we needed to get through this, I learned that He meant He would provide in so many other ways.  He has provided a medical team full of people who would do the very best possible for Bailey.  He has taught me to use my voice to push people further to find the answer when the first one is “I don’t know.”  He has taught me to look at my son and my daughter more like He sees them - completely perfectly made in His image.  Where the world sees a broken little boy, He sees mended and He’s teaching me to see mended too.  

And, as for the tangible things, it’s been there too - right down to checks in mail for the exact amount that were needed to pay for appliances that went out, the yard that flooded, and my own medical bills.  There were rolls of paper towels on my doorstep, food in our porch cooler, and gift cards that have bought nearly every other meal.  I never missed one of her cross country meets, soccer games, choir performances, or track meets in spite of all of the hospital admissions and discharges.  He provided me with a husband who is the best of who I am, spends every morning in a church praying for us, and seamlessly picks up where I leave off.  And, all three times that my own body has been scanned, I’ve returned home still cancer free and returned back to my post of mothering within hours.    

I knew from the very beginning that our Bailey had more grit and determination and stubbornness than most children his age.  He also had more wisdom and intuition.  I knew that one day it would serve him well but I didn’t know it would be when he was twelve.  I also knew our Kate is more sensitive than anyone in the house but also carries more joy in her heart than any of us.  I didn’t know that at nine she would use hers to overflow into my heart and pull me out of the darkest days.  

As a mother, you do not know what lies ahead even when you have your own plan.  None of this was my plan.  No mother chooses this.  

This year in motherhood has changed me more than any other year.  God has daily shown me my purpose, the reasons He saved my life.  When I cried out that I wanted to jump off that plastic couch and run for the hills, he said “stay in.”  He’s given me what I need to stay in.  I am not strong at all.  I’m an actual a complete chicken who hates hospitals more than anything.  I hate needles and scans and certainly hate watching my child do these things.  But, His strength is made perfect in my weakness.  I never actually knew what that meant until this year.  

Last year on Mother’s Day, we all piled up in Bailey’s hospital bed while he got chemo.  We were only together for a little while before I left with Kate and Stephen gave me the rest of the day off.  This year we were home.  We sat in our church pew, ate lunch, rode in our jeep, and I walked down the street to the top of the hill to watch Kate on her bike and him on his scooter.  It was extraordinarily ordinary and yet, miraculous.  

I have wanted to rewind back to January 22, 2017 a thousand times.  Take back that X-ray and throw it in the trash.  I want to erase from my mind all of the children I see daily clinging to life, the mothers and dads trying to make sense of it all, the ones that held on as long as they could.  But, I cannot.  This is where He put me.  

Enough days have not passed where the sting has not worn off, where one smell from the plastic bin that I carried every week to the hospital causes me to close it back up and not unpack it.  Enough days have not passed that I do not grieve the loss of my little boys perfectly free moving leg, now replaced with a metal bone and covered in a pink scar, causing him to work hard at absolutely everything he does.  Enough days have not passed that I don’t worry that I wasn’t there enough for her or didn’t account for her sensitive heart enough.  

But, enough days have passed that I can see that same little boy rising up to be more that I thought he was going to be - more because God has made this into more than I ever could.  Instead of him pulling away in his teenage years, I listen to his every word on middle school drama, how he recalls this experience.  It’s hard to shock me and he knows it, so I don’t have to work to talk to him, he freely tells me everything.  Enough days have passed for me to see that I’m getting a sideline view of his redemption story, with every step he makes toward shedding his crutches, pushing through therapy, and choosing brave.  Enough days have passed that I know that she knows she is loved and understood, that even though there are things that she missed, she cares very little about those and very much about me being present, even if it’s for fifteen minutes in her school cafeteria or her track practice, or her bed every night when I kiss her goodnight.  

Enough days have passed that I know that having two sleeping children to see every morning at the top of my stairs is enough to completely take my breath away.  It’s enough to know that I can do this and that I am enough for them.   

They are fearfully and wonderfully made. 

"I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well."  Psalm 139:14

January 12, 2005

May 19, 2008

Mother's Day 2017

Mother's Day 2018

my beautiful mama