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