Normal

I just marked my calendar:  January 2nd, “LAST CHEMO”

I mean, it’s a relief, really.  A joy to be done with this!  No more sick babies, hospital visits, throwing chairs as I dart across the room, tub in hand, at the sound of retching.

No more fear of missing that one hint that my child is dying.  

I sigh and share the news.  But I wonder.

Who will we be when this is done?  

When the treatments are over and I’ve affectively wrangled my calendar back from the likes of surgeons, doctors, and hospital schedulers;

When Gabe’s hair is dark and thick on the top of his head;

When I can forget my phone atop the microwave in the kitchen;

When my husband and I can talk about something other than hospital appointments and blood counts;

When my other children can feel important for their own accomplishments rather than just because their brother has cancer.

When we can get back to “normal.”

“Normal,” however, ought never be trusted.  As it turns out, when something like cancer enters the room, normal has a way of shifting its relative center dramatically.  So “normal” before cancer was something very different from our current “normal.”

“Normal” then included priorities like political opinions and remembering field trips and good attendance at school.  It included strict rules around vegetable intake and what we wore to church and school.  It included carefully following social expectations in communications:  so many “I’m sorry”s and “If you have the time, would it be ok if…”s. 

“Normal” took for granted that everyone would live.  Cancer abruptly interrupted that normal laughingly tossing it aside like a tornado would do to a 40 ton truck.  

Today our “normal” will take the kids to a Bruins hockey game on a school night and would be ok with a C on a test if I knew they had tried.  “Normal” now celebrates dinners together, especially if I even had the time to cook a chicken.  And it finds joy in a neighbor’s tuna casserole, enough for 2 dinners and a lunch.

Our new “normal,” accepts that there’s always time for a good cry, hugs in front of the tv, and long talks about fear and sadness.

It allows for the words “sucks” and “bad ass” in normal, every-day vocabulary.

Our new normal sees life as something that is precious and fragile and serious.  

If there’s one thing I can be sure of its that, on January 3rd my son – my family – will not be going “back to normal.”  

What I am not at all sure of is who we will be when “normal” shifts yet again.

Again.

by Cheryl Kerr
edited by Deana Tavares

I remember 
Kissing, your bald head
You were smaller then
Still, the same fuzz
You were crying 
Would not be soothed
I had a million things to do.

Every reason
To lay you down 
Let you cry yourself to sleep
But, oh, that bald head
Smelling like powder
Innocence
Simplicity

I chose to hold you
High
Upon my chest
Your tiny bottom
In the palm of my hand

We rocked
Danced
I sang to you

When you slipped
Into blessed sleep
even then
I held you close, to my heart
under my nose

So to kiss
Your fuzzy, bald head
Again, and again

If there is God in the darkness
All these years later
I, again
Am holding
My baby
Laying gentle kisses
Amidst the fuzz
Upon your bald head

Even as you cry
I hold you
Ever closer
Smell your head
Of soap
boyhood
Just slightly more complicated
Than before

You, bent over a tub 
My capricious mind wanders
Into fear
Still, I hold you close
Kiss your head
I know God is here. 

As you sleep
Another day done
I stand over you
Watching
Your chest rise and
Fall

Like moms do
Reassuring myself
That you, are
Alive.

Then I lean over your warm body.
I kiss your bald head.

 Again.

The Value of Joy

Finding and even MAKING joy inside the deep crevices of suffering is what gives life when it feels as if every other element is trying so hard to take it away.

It was late and everyone was tired… which made it the perfect moment for our foolery.  Carefully, with one of us watching the door, we placed each plastic spider.  There were 2 on his bald head and then several others walking up the white pillow and down across his shoulder.  We dimmed the lights and with a nod, my 9 year old pressed the nurse call button.

“Can I help you?” Asked the unsuspecting voice on the other side of the speaker.

And then, as if lying were second nature to him, “My head and chest are so itchy.” A pause for dramatic affect. “Can you send in my nurse?”

“Of course, sweetheart.  I’ll send her right in.”  

The epidural that had been busy numbing his body around the incision included the side effect of itching that often required a second medicine to allow for minimal comfort.  So, asking for relief from itchiness was nothing new for him.

We sat in anticipatory silence for that 30 seconds, all of us watching the door.  The nurse entered briskly.  She glanced quickly – too quickly – at my son and then back at the monitor.

“Well, you just had the additional medication for the itch so I can’t really give you anything right now.  Want to try cream?”  He looked at me with question and a bit of exacerbation. 

“Let me take a look…” and with that she took two steps back towards him and STOPPED DEAD.

The best part about pranking your nurse – especially with something scary like plastic spiders – is that their entire job is to keep you calm and comfortable.  This means that screaming because your child is being overtaken by a colony of insects is not an option.  

We watched with pure joy as, over the next 5 seconds, her heart stopped, she caught her breath, her face went white, and then… composure.  She took a deep breath.

“I’m pretty sure I nearly had a heart attack just now.  If there’s no emergency regarding your itching, I’ll be right back with another nurse.  That was too good not to share.”

…which was the cue for my friend to roll sideways over a well placed whoopee cushion letting out the most amazing and fantastic fart sound ever made in the history of farts.  Together we melted into a puddle of uncontrollable laughter.   

What I’ve learned about life with cancer – and worse, with the treatments for cancer – is how very imperative joy is.  When life depends on progress and progress depends on moving forward we very quickly realized that, sitting still in our sadness and anger does nothing to cure Gabe’s cancer.  

Not that sitting in, what we’ve come to call “The Suck” does not hold value!  Indeed, at times, mindfulness requires it: to acknowledge the suffering in our lives; to sit right down in the middle of it and say this is real and it hurts and there’s good reason why it hurts.  To deny the hard and painful times is to deny life.  

But we’ve learned that joy and pain and fear coexist and even overlap.  So we can be afraid and still laugh.  And we can be sad but still know happiness. 

Smiling and even laughing in the middle of “The Suck” that is cancer does not denigrate the pain and fear.  It acknowledges it, takes it by the hand, and leads it to the next treatment; the next surgery; the next life event whether that is an unexpected infection induced hospitalization or trombone lessons.  

And so, for the sake of life, we will keep seeking joy, even -especially- in the midst of pain and fear…

…even -especially- at the expense of our beloved nurse family.  

The Trouble With Breathing

“How are you?”

“Not ok. “

Today I’m not ok.  I realized while driving that I had not been breathing- maybe for a few hours or days. So I breathed in and it hurt to breathe in. 

And when I did breathe in – deeply making up for lost time – I by accident breathed God’s view of the world around me. 

When I remember to breathe (which is not always) I will typically just breathe what is in my very close vicinity: my happy children, lunch that today is tacos, my oldest‘s need for new shorts. 

There are times, however, when other, bigger, life things sneak into my breathe. There are times when I breathe in the big picture on my son’s illness, of my family’s fractured attempts at being family, the fear in my 13 year old daughter’s eyes when she happens to catch the fear in mine. 

And then sometimes, if I’m not careful, I breathe in the whole picture. God’s view of life, suffering, and hope. I see children living and dying from the same stuff my baby has. I see our nurse but also, behind her smile, the professional trauma that comes from holding babies as they take their last breath.

And then I cry. Because this view is impossibly beautiful and impossibly painful and just impossible all at the same time.   It’s too much for anyone but God to receive.  And so the body does what it was created to do under such extreme circumstances and breaks just a little. 

Today, after realizing that it has been some time since I had last breathed, I take a deep breath. And in doing so I breathe in God’s view. Or maybe I breathe in God God’s self. A breath my human body was never meant to take.

And so today I am not ok.  And also I am with God.  And God is within me.  

Today I breathe. 

The Rainbow House

Dear Rainbow House owners,

I am writing to tell you that I appreciate your rainbow painted house.  

But more importantly, I’m writing to tell you that my young son appreciates your rainbow painted house.

3 months ago we began our nearly daily pilgrimages into Boston’s Longwood area via the VFW Parkway.  In the first weeks it would take us by surprise.  My son would look up from his iPad game or YouTube DJ’ing to see your house.  He would then announce to me loudly, “Look, Momma!  The Rainbow house!”  I would affirm him.  Then we’d turn the corner at Hancock Village and set our minds on the next thing.

But as the days turned to weeks we both began seeking out your house.  Shortly after turning onto the Parkway at Bridge St., the VA hospital on our right, he would ask, “How soon until we see the Rainbow House?”  Stopping at the light at the bottom of the hill I would remind him, “Just up here a little more.”  Yesterday we were taking the same route though with a different destination when he called out to his older brother and sister, “You GUYS!  Rainbow House is coming up!”

I’m sure you’ve gathered, we LOVE your house.  But the reason might not be what you think.

You see, in May of this year my 9 year old son, Gabriel, was diagnosed with osteosarcoma, or bone cancer.  His weekly chemo therapy and nearly daily blood draws and level checks require frequent trips into Jimmy Fund Clinic and Children’s Hospital via your street.  

As you can imagine these trips have quickly become arduous.  While traffic is sometimes an issue, the greater problem is our destination.  Gabe knows he’s going for more medication that will make him feel miserable, more poking and prodding with needles and instruments, more waiting endlessly for drips and labs and doctors.  Every time we drive past your house we are inevitably doing Cancer Things.  And Cancer Things are not fun. Cancer Things are scary.

But then Gabe sees your house.  At 9 years old he can’t tell me what he is feeling, but I can see it in his eyes:  Hope.  Because bright colors put together in a rainbow means hope.  And also it means luck – GOOD luck.  And also it means happiness.  Because you cannot see a rainbow and not feel happiness.  By his smile, I can assure you there is happiness.

This is what I imagine Gabe sees.  But, dear Angels, I have lived more years and I know what the rainbow means.  I know that painting your house in rainbow colors is both an act of courage and an act of resistance.  I know that a Rainbow House like yours, including all of its joy and hope, would risk being burned to the ground just 10 years ago and maybe even today, were it not sitting in West Roxbury.  And I know the freedom and victory you must feel to paint your very home in colors that now symbolize inclusive love; a freedom worth the risk because -Thank God! – we are all blessed and therefore beloved.  When I look past my newly radiant, bald little boy and see your beautiful house what I see is courage.  Courage and, of course, joy.  And hope.  And happiness.

So thanks.  Thanks for sharing yourselves with us – especially since what you have to offer is exactly what we need right now.  Thank you for giving him hope when hopelessness looms in his shadows.  Thank you for giving me courage to walk with my child through this hell that is the scariest thing I have ever done.

Thank you for sharing your gayety with us.  Your courageous joy gives us life.

A Vision, A Diagnosis, and Some Hope

For a few months, I had been thinking a lot about how broken our culture and world are, wondering what my faith could offer that was powerful enough to heal it.  I read Brené Brown’s amazing book “Dare to Lead: Brave work. Tough conversations. Wholeheartedness.” and was realizing the positive effect such a theory of leadership could have on communities of faith which, by their founding values, are leading voices in the power of love when shared through community.  And I was hearing God’s call for me to use my gifts of speech, empathy, and persistence to get this conversation started across this country.  I had hired a coach and began my research.

And then my 9 year old son was diagnosed with Cancer.

He had been complaining of pain in his leg for about 2 weeks which I had Mom-diagnosed as “growing pains” and blew off. Then the news from school that he had fallen asleep at his desk twice in one week… which of course, was adorable… but got me assuming the growing pains were keeping him up at night.  I stopped by a CVS on my way home from work intent on buying melatonin, but the God-sent pharmacist sent me home insisting I talk to my doctor first.  

It was a Thursday night – why do we always remember the day of the week?  I walked my baby into his doctor’s office ready for a quick once over and prescription.  I had dinner to put on the table and my 11 year old had to be somewhere by 7.  She had him hop up on the table and slid her fingers gently down his right leg.  As she hit the tumor, he winced and jumped.  Forty five minutes, a set of x rays, and a handful of calls to Children’s hospital later and I was told what was coming… “Prepare yourself, Cheryl.  This is going to be a long road.  There will be surgery.  There will be chemo.”

Later that week my son was diagnosed with osteosarcoma and just days after that we began our treatment program.  

Where my divine call to leadership and change and the lessons about love and kindness learned through the hard and soft days of my son’s treatment intersect is where Parables of Hope found its conception.  In this space I will share stories of life and death and love that give proof to the inherent goodness with which we are all made.  Through this project I will wonder about how courageously entering into relationship which is founded in vulnerability and authenticity can begin to heal our divided communities.  

Through this blog I will share stories of hope for this divided and broken culture – stories that originate in the faith of my call to ministry.   I will reveal my hope for a love that, in my language, is The Christ – a love radical enough to bring even the most divided together.

A love that is powerful enough to heal this angry and hurting world.