footprints

Kendall.

Background information:

Kendall was born with hydrocephalus.  And, shortly after, developed encephalitus. So, periodically, like every 3-6 months, Shay has to bring her to neurology/pediatric specialists so that they can do a cat scan and head measurements and monitor the presence of water in/on her brain.  The last checkup was in July… and at that time, they told Shay that she was progressing well
and that there was only a small amount of water still present and that most of that was pooled in the outer regions, having successfully been expelled by the ventricles.  All good signs.

–

I remember when I was a kid. People were all brash and (politically) verbally insensitive about the condition, and babies born like this would be called “waterhead” babies.  We’ve come a long way as a society, in that regard, because I can say that I don’t really hear that term anymore. Which is a good thing.  But, yes. You would know these children because they had larger heads, so large in fact, that it was sort of like they were swooning always, trying to balance the weight and width of their large heads (think Stewie, family guy <– not a joke, seriously), on their tiny, narrow baby necks.

There are a variety of things that hydrocephalitus can cause.  You know, complications. When diagnosed correctly early, and treated succesfully, often kids recover to develop normally. However, some children also have developmental disorders.  Neurological problems.  In extreme cases, it can be a lot like mild mental retardation. Even more extreme still, it can cause death.

I have another cousin who was born this way.  His name is Coby.  He is, umm, maybe like 19 now.  He is a more distant cousin than Kendall.  My grandfather (Mom’s dad) and his grandmother (his Dad’s dad) were sister/brother.  But, in a small town like Carthage, it is common that you know all of your cousins, even distant.  In fact, my grandfather’s brother lived right across the street from my grandparents. As did their children and their families.  And their grandchildren and their famliies . And, so on.  And my grandfather’s sister (Coby’s grandmother) lived on the next street, that snaked back into the Mississippi countryside, parallel to her brothers. Her cinnamon colored brick house perched on a hill.  So, we knew all of their children and all of their children’s children, and I am sure all of those children will know the next generation of children.  It is easier to keep up with your family when everyone lives in such close proximity. 

Anyway, when Coby was born, I remember, we were all at my grandparent’s church. 

One day I will have to tell you about old school small town Southern Missionary Baptist churches. Most {deep South}ern black people grow up in, or have (at the very least) experienced the missionary baptist church tradition.  My grandparents were no exception.  So, everyone is sitting in church that Sunday, reclined on the plush reddish pillowy backed and mahogany wood fronted pews.  My grandparents, Coby’s grandparents, grand uncle and his folks, etc, all went to this same church.  Churches are sort of like… entire families will go to one same church.  In a church, there will be a few family bloodlines, who all live in the same  community.  My grandparents church is called Pilgrim Rest. And the community it caters to, there are about I would say 10 -
15 families.  Every member there comes from one of those families.  My grandfather is a Jones.  <– Terribly common, right? His brothers and sisters and all of their kids, grandkids, great grandkids… and all of their families, can trace their lineage and their experience with that church, to the fact that they are part of this Jones bloodline.  And that’s how they came to be a part of this particular community.  There are other families, like the Kincaids.  The Walkers.  The Browns.  The Grays. And, there will be like the great great grandparents of these families, (whose names can usually be found inked among those few signatures on the church’s charter, which hangs on the wall behind the pews occupied by the church “mothers”)  and then ALL of the little subfamilies of the kids and grandkids
and so on present on any Sunday morning, comprising Pilgrim Rest’s attendance.

So, anyway, this day, Gwen (Coby’s mom) and Al (Coby’s father, my Mom’s cousin), were out of church.  Noticeable because as I said, small town, everyone knows everyone’s business/notices everyone’s attendance or lack thereof.  I can’t even begin to recount all of the times my grandmother, while dressing for church, would peel the curtains back in her den’s picture window… peer across the highway at her brother in law’s family home and comment on which lights were on and off, which cars present in the gravel driveway or not, and then, inferring from these pieces of evidence juxtaposed againt the time that the grandfather clock hands relayed that it was – make her familiar Sunday morning declaration about who would miss Sunday school in their household or not. 

But, back to the morning in question. 

So, my grandfather’s sister, Coby’s grandmother – Aunt Kercille, stands up…. old lady in a wide brimmed white church hat.  And announces that they (Al and Gwen) are in labor.  Mothers of the church gasp and cackle in chorus, whispering among themselves about the excitement of such things.  Church fans flap back and forth. Coby has an older sister, at this time she was like 2.  Her name is Brittney.  So, she is sitting beside Aunt Kercille, kicking around, eating her fist, doing baby things. This is as much a sign of the impending birth, as any announcement or any other thing, because in any other circumstances, Brittney was far too busy to be left in her grandmother’s care for the duration of the buttoned up Missionary Baptist service.

I was like 10 at the time.  I would mostly sit with my grandmother because my grandfather was an officer in the church, a trustee.  They kept up with finances and made like decisions for the church’s business interest. But, to me, at that age, they were just stoic men in nice suits who all sat together in a little important area, and looked important and solemn and trustee-ish the entire service.  Kids  definitely weren’t welcome to sit with them.  Anyway, I would sit by my grandmother and kick at the back of the pew in front of us, with the toe of my church shoes.  I only did this when she wasn’t paying attention though. 

I was always a busy body in church. Not sure why, just got bored with it easily.  I come from a particularly devout family.  I would say, I spent 70% of my young life, in church.  Not exaggerating, but that is another story as well.  But, about the boredom.  First of all, there were stained glass type windows. Wait, totally not correct. Not the beautiful colors of stained glass or the beautiful designs, but like.. a distorted type of glass. Clear glass but distorted and bublbed on the surface so that no light could really get completely in.  You could tell that it was  daylight, and some light came in, but it was all warped and shadowy.  Just not the best light.  And, then it was all formal… everybody in church clothes.  And, people singing out of hymnals, hitting notes they really couldn’t reach,
mumbling in a half sing/half mumble type of voice all the words they didn’t really know.

But, I was excited this day.  Because a baby was being born.  And, although he/she wasn’t a close cousin, he was still in my family. I understood that part, because the older people in your family always made sure you knew who was who and who all your extended cousins were.  We knew
Aunt Kercille really well.  In fact, I’d been to her house several times, etc.  I understood that this was my granddad’s sister. 

So. Coby was born.

It was months before Gwen and Al came back to the church. Well, sometimes Al would come, alone. He wasn’t gregarious and friendly, as usual.  But, rushed and reserved.  He would slip in and sit at the back.  He never stayed through benediction, but excused himself, a finger in the air, out of the door before people had a chance to bombard him with hugs and handshakes and questions. And, as I mentioned, always alone. It’s different for a father than it is for a mother and baby staying in after birth.  I accepted and understood that.  But, aside from that, it was still so weird and different from other births.  First of all, shortly after babies were born, the family memebers and the friends would all go to the house to see the baby.  We never did that with Coby, which I found odd.  But, because of how people were acting about it, I knew better than to ask. People didn’t laugh and smile and giggle when mentioning Al or Gwen or Brittney or Coby.  There wasn’t that usual baby was born excitement.  In church, there were no pictures passed around, or blue announcements.  There was just silence.  I can’t even remember how it was recanted to me that the baby had been named Coby.  But, I know every piece of information being passed around about him was in whispers, the way people conduct handling rumors or shameful secrets.  Convos about Gwen and Al would be very rushed, in high pitched stressful tones.  I knew something was wrong.  Although my family did this thing where they always tried to conceal anything that was ever wrong from the chlidren.

I don’t remember when I first heard the term waterhead, or who said it.  But, when I saw Coby for the first time.  Swaddled in all of his little creamy white and pastel blue blankets… it was clear immediately what that term had meant.  Gradually, I figured out why people had acted so strangely after his birth… with all of the heavy eyes trying to still smile about the ushering in of new life, and all of the whispers.  Coby didn’t do anything like a regular baby would.  He cried all the time.  He didn’t babble and speak and bite his fists and try to form words. He didn’t sit up in the pews, passed around from lady’s arm to lady’s arm and cooed over in desire.  He didn’t stir that maternal urge in women’s guts. Or, at least, I never heard anyone staring down at him gushing about how they wanted one. People didn’t crowd around his mother after church, poking at him.  And, as he got longer and older and bigger, he didn’t walk, or crawl. Laughter, interaction… He never did those things either.

There were still whispers.  His name would sometimes be mentioned on the prayer list.  The sick and shut in, which was usually reserved for the very ill or elderly. I heard whispers of hospital visits.  Around 2 or 3, there was jubilation at the announcement that something had worked, and Coby was walking. I sat, wondering what that something was. Imagining impossible things, and wondering why any something was even necessary. I remember that, because the very next week, he was at church.  And he was walking.  But, with heavy metal braces fitted around both of his legs. People were smiling, but still with that heaviness around their eyes… and those wrinkles that are normally associated with frown lines.

This is how I learned the lesson of hydrocephalus.  But, in our communities, it was never called by its real name.  Like it was too terrible a thing to utter.

Everything learned there, as a child, was primarily learned by observation.  No one said things, or told you things, and you knew to stay out of grown folks conversations.  What you knew you picked up from the leakings of too loud whispers.  Or, rumors. Or, rushed simplistic overly generalized explanations for things far more complicated.

Adults mourned Coby, mourned the crashing down around them of all of the dreams of things they had imagined he would be. Mourned the release of their expectations.  Mourned the narrowing in of his life’s possiblities.  But, they didn’t share this mourning verbally with the children, or even among themselves.  And, we were left alone to try to figure it out just from watching him.  We were left to not understand why he was wearing those braces or what that meant exactly.  And, of course, we were left to try to guess what we should mourn, exactly.  Because, of course, we were mourning too.  There
was just.  Something so sad about a baby that couldn’t laugh or bite his fists.  Who walked only with the help of metal braces.  Who couldn’t do a thing about his situation but fret and cry.

–

Coby.  Is my only reference.  To understanding some of what is going on with Kendall. Sadly.

Of course, I’m not 10 now. A grown educated woman, I can say the word hydrocephalus, and I can say the word encephalitis.  In fact, everyone in society can now too.  I imagine, if I were to go to my grandparents church and sit on the plush red and hard mahogany pews of Pilgrim Rest….  even the congregation has evolved to the point that they can call Coby by his name.  And smile real smiles, without the terse explnations forced out of tense lips.  Without the fearful whispers of an aborted future.  There is hope, in gazes, where there was none previously. And, as you probably know, hope can add copious amounts of compassion and life to any conversation.

We all know much more.

Yet. 

We are still all scarred by the perceptions of old.

We are still fearful.  Because, the health and the futures of your children… are still very worthy things to be fretful and worrisome over/about.

When I see Kendall, laying there, giggling, trying to balance the weight of her huge wobbling head. I can smile and laugh. The clouds of doom and discomfort don’t settle and engulf my entire thought process. But, I can admit that I do also still see Coby. That there are still questions there, churning somewhere deep… beneath the joy.  Of what she can become.  Of if she will feel as we have all felt.  Of if she will experience the most worthwhile of what incarnation and life hold within their presence.  Love.  Even anguish.  The triumph of overcoming that aformentioned anguish.  Fear.  If she will ever realize the presence of the potential, that lies within that curious organ, from which thoughts and dreams and motivations and rhythms of existence flow.  And, if that potential, present somewhere, will ever materialize.

She is much more engaging than Coby was at her age.  I line those thoughts up, her existence here in the now and the memory of Coby then… and I try to rationalize something that I can’t possibly actually rationalize.  I do the same thing when thinking of time.  Well, the doctors now know this and this and this.  And the doctors then… knew much less.  Treatments are better.  Timelines are more accurate.  Therapies, drugs.  Alll of these things have improved…

None of this means much, in predicting the future.  Sure, we have much better chances.  But, the reality is… these things are still chances.  Only the passage of time and revelation of moments held suspended in the future, can speak truth to what the journey of Kendall’s or anyone’s life will hold. But, it is also just the human tendency.  To try to understand.  To explain to ourselves. To make sense of our memories.  To adjust to time.  To make it all make sense . To fix.

–

Friday, Shay took Kendall to the specialists.  For her checkup.  Just to guage the amount of water on the brain, still.  To measure her head.  To talk about prognosis.  To make predictions that may or may not even come close to reality.

It was a routine thing, supposedly.  Kendall was not doing anything that she hadn’t done previously.  They would be home in a few hours.  In time to get Cameron, Jalen, Bryson, and Meighan off of the bus.  To prepare dinner.

Only a week ago, Shay’s husband – Meighan and Kendall’s father, had been arrested and charged with burgalrizing a small convenience store.  He was arrested, and the entire family thrown into an imbalanaced state of flux.  A felon, an ex con, already, the prospects for Al’s future….  were dismal.  This charge was so similar to the first one.  And, then there was the drug problem.  The notorious drug problem that of course, Shay recognized needed immediate attention and help…

But, there were just so many other things.  There was Jalen’s autism.  Bryson’s digestive problems.  The urgency of finals and trying to finish school.  One more semester and she would finally have in hand her degree.  There were dinners to cook.  There was money to try to secure.  Because, as an ex con herself, a felon… as well as a mother of five.  Her choices were much more narrow, than the usual.  There were dreams that could no longer be dreamed.  Frustrations and challenges.  There was the added daily weight of dealing with 4 children with health/developmental challenges.  There
were the weekly drug classes that she had to attend for the next 5 years, as part of the conditions of her probation.

There were so many other things.  That. Al’s drug problem had just sort of settled into the normalcy of a chaotic family background.   But, somehow.  Somehow.  They were making this all work.

As they needed to.  Until.  Just until…. someday, when there would be adequate time.  To pick each challenge out of  the chaos.  One by one.  And fully address it.  Right now.  She was riding a unicyle, with swaying stacks atop her head, and rested on her shoulders, and on the handlebar, and behind her on the seat… but somehow. Somehow, as long as she kept pedaling.  As long as their was the force of forward momentum, there was enough there to balance the swaying. Somehow, she was keeping things from falling. All around her.

But, then there was the robbery. 

The shocking charges.

The man, that she thought she knew, crying over the bad connection of a jailhouse telephone.

There was the outrageous bail, that she could not even think of paying.

There was Christmas, coming. And children scribbling letters to Santa Claus.

There was the five year old daughter, standing at the window, watching outside, waiting for Daddy to pull up.  That she somehow had to find the words to tell.

There was the 11 month old baby, that still couldn’t even sit up, in the background crying.  That couldn’t balance the weight of her head atop her neck, against the impossible squeeze and weight of spinal fluid packed tight.  That doctors said might never walk.  Or comprehend.  Or do anything, on schedule, ever, in life.

There was the autistic son, aggravated by loud sounds, banging his head against the wall.  And, his older, frustrated brother yelling at hiim to stop it or die.

There was the light bill, due in the morning.  Of money in Al’s pocket.  Now in possession of the county jail.

There was a final paper due at 5.

There was a swaying tower of complicated things.

—

When the doctors entered the room after reviewing Kendall’s cat scan, Shay had folded the little hospital gown neatly and sat it to the side.  She had placed each pink and purple article of her babies clothes back on, and positioned the bow that she had just made for her that morning, on the right side of her head.

She was smoothing her hair around the edges.  Checking her watch.  Thinking about how close they were cutting it to making it home before the bus. Of what she would say to Al, how she would say anything to Al.  Of what she would make for dinner.

The group of doctors pulled up stools, and sat down.  Heavy sighs.  Dropping the thick folders that held all of Kendall’s current results, previous observations, and files, heavily down on the bedside table.

Brain tumors, the lead physician started, are complex, complicated.  Challenging.

Shay didn’t understand where the conversation was going.  What did brain tumors have to do with anything?

—-

The surgeon will attempt to remove Kendall’s brain tumor on Wednesday.

Yesterday, docs moved Kendall from Room 572 in the children’s hospital… where we were all able to sleep peacefully beside her, in various arrangements on sofa, floor, etc.  Where a huge picture window gave us access to the city.  To at least watching the breeze, if we couldn’t breathe it.  To watching the enouraging sparkle of lights draped on poles, and garland, and nighttime sparkling unusually bright, bathed in decorative pre Christmas glow. 

They moved her to pediactric ICU.

And, as you know, about ICU.  It is basically just a wide expanse of space.  With many patients arranged, in open, around a central nurses/physicians station.  There are more wires.  More monitors.  More machines. More capabilities, and more staff, in the event that something were to go wrong.  Yet.  Less privacy.  Less space and time to visit and pray over, to touch, to comfort.  The cruel feeling that there is less autonomy to decide, to protect, to intervene. Although these things are undoubtedly in the best interest of the patient, they are hard to swallow.  Particularly in the case of a baby.

The results of the cat scan were confirmed by a more intrusive MRI.  Kendall had to be completely sedated for this.  A tube put down her throat to help regulate her breathing.  Completely put under so that she wouldn’t wiglge or move or disturb the images.

And then, she was returned.  Wheeled back into ICU.  Where they placed her again in a huge white steel crib.  Much larger than her tiny body.  The type of crib that you might imagine from a 1950′s hospital horror movie.  Everything in the ICU ward is white.  Just clinically harsly white and sterile.  Robes of doctors.  Intense glare of hospital white flourescent light.  Cribs of babies.  Wires of machines.  Floors.  Walls.  It is hard to imagine that people heal here.  But, again, that is totally
a misperception.  The mind again playing with reason and memory, color, trying to figure out.  Trying to fix.  Memories of hospitals, in our lifetimes, have been unusually kind.

On the contrary, the staff is.  Kind.  They remind us, softly, as we file in and out two by two as only two are allowed at her bedside at a time.  To make sure we wash and santitize our hands before we touch the baby.  They pick her up and rub her hair gently as she cries, lost in the unfamiliar environment.  They comfort each of the babies laying in the huge white cribs, there.  And, each of the families, suspended on edge.

There are more procedures. And challenges in the days ahead.

Her tiny brown arm is wrapped in guaze and bandages from the base of her fingers to her elbow.  Beneath the bandages, there are the wires of monitors and the needles of drips.  She can’t be fed, by mouth, as having anything on her stomach might upset the tubes that will have to go in her throat when she is under anesthesia.  Many things.  She is fussy because of this.  Because she is greedy.  And also, she is used to the oral pacification of a bottle. 

Women walk by and remark how cute she is.  How beautiful her brown. How curly her hair.  How stunning her wide set, deep brown eyes.

It is true.  SHe is a beautiful child.

And fragile. And innocent.

And confused.

She searches our faces for her mother.  Panic in her eyes, that is immediately eased when Shay offers her voice.  “Kendall”, she whispers softly, and instantly Kendall’s gaze relaxes.

Shay is diabetic.  We worry that she isn’t eating.  Or sleeping.

We worry that she hasn’t cried. 

Concessions are made at the jail.  The judge is a childhood friend of ours.  In fact, he graduated with Shay.  Small town stuff right?  But, concessions are made to keep Al informed of what is going on.  He calls now and then, so Shay carries her phone in hand always, guarding it fiercely, so that she never misses a ring.  As she can’t call back. 

Al is angry.  His voice loud.  And afraid. 

He is also experiencing the first symptoms of withdrawal.  Which are notoriously difficult to survive. 

But, if you must withdraw, jail is probably the kindest place for this.  Short of a medical facility.  Kindest, not in  how you feel… but, kindest in the long run, in that… if it is the proper type of jail, you can not access your  drug(s) of choice to ease the withdrawal.  This is good because the intensity of withdrawal has kept many who desired being clean, from being able to effectively clean themselves up.  The craving of each cell… of the entire body… for the drug on which it’s dependent.  Many can’t deny this. Drug addiction, is another thing, that we are all too familiar with within my family.  Like, score: drug addiction 5.  Family 0.

The waiting room is filled with the heavy energy of worry.  Confusion.  And, of course, waiting.  People laugh and make conversation here and there.  But, everyone recognizes, that all families here… are here for babies who are in particularly precarious situations.  ICU is always relatively serious.  There is a room of cots, and people jockey all day for cot position, so that they won’t have to sleep on the floors at night.  At this point, all the cots are taken, and someone stole Shay’s blanket the night before.

Even in ICU, in dire circumstances… cold world.

I find this unbelievable.  And think to myself, who would be so bold as to steal something.  Anything.  Even a penny. When they are in a situation such as this.  Which is when I think one would be urgently petitioning the intervention, the grace, the presence of God? Within or without.

But, I put that thought aside quickly.. reminding myself to stay away from judgement. 

Shay doesn’t have a cot.  she is #23 on the waiting list.  So, she is sleeping on the floor. With no blanket. or, taking tablets of no doze.  Waiting for the representative/case manager, assigned to our family by the reservation, to come arrive on Monday morning with meal tickets.  As the hospital dining area is characteristically expensive.

She won’t leave the hospital though.  Or leave the ICU ward or floor.  These are the first nights that Kendall has ever spent away from her.

She mentions something about a final.  Tells someone over the phone to remember to bring her laptop.  She has a paper due, too.  And, to not forget to check a price for a toy that Meighan has asked for for Christmas.  And, to not forget the charger because if her phone dies she won’t be able to hear from Al.

She has $4 to her name, on Bryson’s child support card.  An empty purse. An empty wallet.

A full heart.

And hopefully enough momentum left in her to just keep pushing.  To just keep pedaling. 

Because everyone needs her.  For balance.

Until….  until of course.  A whenever that will never come.  When they don’t.

 

 

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