I remember

Today is the three year anniversary of Noah’s cancer diagnosis. Sometimes, often… I look back over the last three years to the beginning. It seems so so far away— a lifetime ago and yet I remember that day as if I had lived it over and over a thousand times.

The way the sun was coming in through the thrift store window…the yellow ceramic bird I turned over and over in my hand as my cell phone rang….the way everything suddenly froze and the noises around me faded as Andy said “I’m so sorry, so very sorry.” I remember trying to make sense of the words coming over the phone….lab work…abnormal….leukemia……cancer…hospital…..urgent….I remember the way the carpet felt under me as I sunk to the floor in the the middle of that sunbeam — in a crowded store — on a monday afternoon — in early March…..

I remember handing off Eli’s carseat in the parking lot – turning — the first of many times — my youngest over to loving almost strangers. I remember falling apart again as I entered our house….and the great big gulping sobs as I tried to explain to my husband how very sick our child was…….I remember climbing the stairs to Noah’s room…..he was asleep as he was so often those days…..I stood at the foot of his bed and stared as if I could burn the image of his sweet face into my mind forever. Golden tawny curls on his pillow, long lanky limbs askew tangled in his blanket, baby faced with thick eyelashes on his pale pale cheeks….I remember Tris and I gently waking him to explain things the best we could….our own tears, fears tucked away tight behind our most reassuring parent demeanor.

I remember the long quiet drive to the hospital and stopping to buy him McDonalds on the way…I remember thinking over and over this just can’t be happening..this can’t be real….I remember the long first days and nights at the hospital….the blur of faces and names….the surgeries, tests and consults…..his first chemotherapy and blood transfusion…….the tears and terror and bone deep sheer exhaustion of it all………and yet I remember the Grace too…..the Grace along the way….how our doctors steadfast optimism…our nurses compassion and tenderness….our families love and support….and the unfailing devotion and kindness of our friends carried us through those first weeks and months.

I remember bringing Noah home from the hospital ….after his first month long chemotherapy….that first time…buckled snugly into the backseat tucked under a blanket……watching him as I steered us so carefully over the river and through the woods all the way home…..I felt just like a new momma… bringing him home for the very first time…..vulnerable, scared, unsure, inadequate and a little bit in awe that I was going to get to keep him.

I remember learning how to balance a vomit bucket while driving…..how to sift through articles from medical journals to find the right questions to ask…I learned how to read bedtime stories and sing lullabies over the phone…..how to administer chemo….insulin…. to navigate pain management……to ask hard questions…..to homeschool from a hospital bed…..to restart an IV at three am in a dark room……to read lab work….to tell a doctor no…to rock the boat….to stand my ground…..to ask for help….to sleep in 10 minute intervals on a hard plastic couch….to decipher the look in his oncologist’s eye…..to read between the lines.

I remember the first time another child in our cancer community died. Shocking and tragic and heartbreaking…….we mommas cried and grieved together. I remember the small smooth stone I picked up for that child – I remember writing his name so carefully on its speckled surface -and placing it gently down next to the candle on the shelf in the kitchen. I remember when the shelf became so full of stones I had to stop…….had to put down my sharpie and walk away….look away…..no more stones for me. No more. I remember asking what does that make me? The momma who no longer has tears for other dying children? I remember when I use to have so many more tears. Three years later, I am so weary — Dodging artillery, land mines and sniper fire….. I just want to carry my son over the finish line to safety. The truth is, I have nothing left for the wounded I pass along the way. I whisper a prayer as I pass them in the hall and silently wish them well.

So much has changed — the cost has been so high – – relationships steeled, friendships lost and gained, expectations sacrificed, faith eroded but intact …Lord knows my other children have suffered too….I lie awake at night worrying that I have shortchanged them a good part of thier childhood being this cancer warrior. The hardest part is that I can never go back….never again be that momma….you know that one before cancer pulled the proverbial rug out from underneath me….forever rearranged me. Leg pain will never again just be leg pain…a bruise will never again just be a bruise. The idea that something terrible is rare, will never again be reassuring to me. Some part of me will always listen for him at night while another will always hear the beeping of that damn IV pump in my sleep…….

Whats more, Cancer has not made me a better person…..I’m not necessarily wiser, or stronger or braver or more resilient……I’m not kinder, or gentler or more patient…..If anything in some ways I am harder – quicker to sort the wheat from the chaff – quicker to walk away from those that might not understand- quieter – more insular….and though I have a much deeper well of empathy for the suffering of others, I find I have less tolerance for the subtle dramas of the non-cancer mundane… I am not more confident…. I still find myself at times vulnerable or scared or unsure …just not when it comes to Cancer or Noah…there I am fierce and unmovable. I am his protector and advocate and cheerleader….I am a cancer-momma…for better or worse. And I am tired. So so tired.

What does that make me? Who will I be when this is over? I do not know…..Maybe someday the layers of bitter and sad — the indelible marks of the suffering I’ve witnessed will wear away to the shiny once again. I suspect it will in time. I watch Noah thrive…his laughter, the music, his banter with his brothers drifting down from the kids room……my heart swells. This gift of time. Of them. I will never, could never take any of it for granted again.

I try not to look back. Except today. Three years today. One thousand and ninety five days………so many days…….so many steps forward…….and only 124 days to go. We are almost there. Almost there….And we are not alone. I wake up every day mindful that we couldn’t have made it without all the love and support from our friends, family and community….those near and far. And I wanted to take the time to say I am so eternally grateful. Thank you all —— for your prayers, and light and love and care and encouragement —-for us all. For walking with us this long road.
I will always remember.

We love you and we are almost there …….see you at the finish line.

My Faith: What people talk about before they die

CNN Belief Blog

Editor’s Note: Kerry Egan is a hospice chaplain in Massachusetts and the author of “Fumbling: A Pilgrimage Tale of Love, Grief, and Spiritual Renewal on the Camino de Santiago.”

By Kerry Egan, Special to CNN

As a divinity school student, I had just started working as a student chaplain at a cancer hospital when my professor asked me about my work.  I was 26 years old and still learning what a chaplain did.

“I talk to the patients,” I told him.

“You talk to patients?  And tell me, what do people who are sick and dying talk to the student chaplain about?” he asked.

I had never considered the question before.  “Well,” I responded slowly, “Mostly we talk about their families.”

“Do you talk about God?

“Umm, not usually.”

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Looking for the Grace along the way

One more day until October 1st.  24 hours.  EXHALE.  I’m not going to lie.  I’ve had a really hard time with Childhood Cancer Awareness Month.   Seriously. You think YOU’RE tired of seeing sick kids, sad statistics, death, fear and horror everyday in your news feed?  Yeah, well so are most of us mommas who live with it every day.   We can’t freakin WAIT for it to be over.  Hell, I want to hide my OWN news feed….September will end and most people will go back to posting pictures of apple pies and kittens and funny jokes…..but for parents like us will anything really change?  No, not really.  But I can dream.

Dream of a time when it really will be different.  I mean the whole cancer thing – over – gone – treatment done!  Its not that things are really bad per se right now….I mean Noah is doing amazingly well.   His counts are good, his test results look stellar, his blood work clean….he is thriving!   Its just that I so terribly terribly miss our pre-cancer lives sometimes I feel I might die from it.   I find myself wanting to run through the months…..push on to winter, quick…now spring…and summer again…so fast fast fast to a time when we can be cancer and chemo free.   Now that we have a head start if we just keeping running and don’t look back, relapse won’t be able to find us, right?…..Or maybe I just need distance and some time….to be alone to grieve a bit…to be able to turn off the phone, the computer, close my eyes, take a nap…..and know someone isn’t going to die while I’m sleeping.   I want to set my Facebook profile to friends only and post pictures of kittens, fall leaves, pumpkins and smiling babies……Fuck cancer.

If I’m honest more than anything else I find I’m angry……I’m angry at pretty much everything.  You, him, the UPS guy, the person that tells me to take it easy, the person that tells me to suck it up, the person that tells me to get a hobby, the person that tells me I have to move on and not let this define me, the person that tells me to get help and well yeah, the barber, the baker, the candlestick maker…. oh and God….mostly God.  You see I thought we had this great thing going…this fantastic relationship…..but then Noah got cancer and the shit hit the fan…and its kind of a trust issue now I suppose.  Once your child has cancer, you can never really go back to thinking that if you just have faith everything will work out in the end.  That everything happens for a reason. Because honestly…it doesn’t always…..and we know that now.  And I can’t find my way back.

Sometimes kids suffer and die.  And its horrible. And I could have lived my entire life without ever bearing witness to that kind of suffering…..I mean honestly I know that cancer is not the end all be all of horrible things that can happen to someone – but that awareness doesn’t make me less bitter.  Sometimes kids choke on pebbles, or get hit by cars, or are born too early, or get other horrible diseases that steal their lives…..and I am mindful that I wouldn’t want to trade places with other mommas or their horribles for all the tea in china…..but somehow that doesn’t make it any easier.  It doesn’t make this place any less dark.  It should. God help me, I know it should.  But it doesn’t.   Please don’t misunderstand, I am grateful. I am so so so grateful that my child is alive…..and if the price for that is this…… I’ll willingly pay it a thousand times over.   But I just wish I didn’t feel so broken…..so irredeemably broken.

So I am looking forward to October, to the leaves and wind and even the snow…..to the quiet and dark and rest…to healing and redemption and renewal.  Pray for me.  Pray for all of us mommas….pray that we don’t lose ourselves, our families, our perspective…..that we can look for the light on this journey even in the darkest places…..that we can make our peace with God….that we can find the Grace laid out for us along the way.

 

Summer in Cancerland

Its been a lovely summer. I have been far far away for quite a while now. On vacation really. A lovely place called Denial. If you haven’t been there you really should visit. The weather is divine and its about as far away from Cancerland as one can get. The only problem with vacation I suppose is that eventually you have to go back….to reality, to work, to the hard stuff. When Noah left the hospital in January and we moved from frontline treatment to maintenance treatment, we banned cancer from the house. No really. We fired our home health nurse, asked the physical therapist not to return and refused any home care of any kind. We made the house a “cancer-free zone”. Out went the sharps container. Out went the boxes of hats we had amassed since diagnosis. Out went the blood pressure cuff and the diabetes testing supplies– the tubes and needles and flushes. Out went the bags and bags of hospital supplies….and anything and everything that resembled “cancercare”. No more vomit bags in every room of the house and the glove box of the car. All the hospital bags are finally unpacked……and I no longer sleep with a thermometer and cell phone next to my pillow. The only souvenir of Cancerland that inexplicably remains is the “Caution Chemotherapy” sticker on the back door. We fast tracked to normal as if we could simply erase Cancer from our lives by boxing it up and putting it away. Slowly these past few months I have learned to breathe again….to go an entire day at a time – an ENTIRE twenty four hours without once being struck paralyzed by the fear that my child might suddenly die. My hand doesn’t automatically go to his forehead every time he is within reach. My beautiful beautiful boy is thriving. His lungs have cleared up and his hair has grown back thick and wavy. His smile is quick and easy again. His skin glows pink and rosy- evidence of a summer NOT spent on the oncology ward but sailing and laughing and traveling and enjoying his WONDERFUL LIFE…..So we banished cancer…… And you know what? It worked. Sort of….except when it doesn’t..because sometimes it all comes crashing down around us. Because every now and then, like yesterday, we have to go back. And its devastating. Utterly. I feel like Persephone torn from all thats good and light and warm and alive….and dragged back to Hades –back to the dark place of my deepest fears and my darkest nights. And like Persephone, I go because I have no choice…I know I’ll return again and again. Back to Cancerland with my sweet child. Back to the hospital I still have terrifying nightmares about. Back to hold the hands of other mommas who haven’t yet been paroled. Back to the IV’s and masks and procedures and tests and labs and chemo and blood and vomit and tears…….I have the dates circled in red on my calender….spread out over the next two and a half years like stepping stones —the precarious path out of Cancerland forever….or so we hope. We hope with all our might. We dare not presume….so hope will have to do. I was sitting with another momma the other day. I’ve been where she is. Her son was in surgery…the outcome unknown and a long road ahead for his recovery. She looked up at me and asked “ Does it ever get easier?” I wanted so badly to lie to her and say YES….YES it gets SO much easier, just wait! But I told her the truth instead….it gets easier, then it gets harder, then it gets stranger, then its just different. But all along the way there is Hope….and if we’re lucky Grace. And so once again back from Cancerland…. I sit here trying to shake off the chill….soaking up the sunshine in Denial a while longer…holding my babies tight….savoring the mundane of being home, fixing dinner, bickering children, errands, tasks, folding laundry, laughter, music, my sweet husband…stocking up….all the time knowing that it won’t be long until we return…. winter isn’t ever very far away.

Dear Parent of a Sick Child (letter #2)

Beautiful……

BARREN TO BLESSED

Dear Parent of a Sick Child,

You are still there, aren’t you?  You are still at the hospital awaiting for results, for your child to wake up, and for any glimpse of good news…anything that will settle your heart to the hope of a new day without sickness.  You are tired, but you do not want to show it.  You put on a strong face, but you wonder sometimes if you can keep this costume of strength on.

You have found yourself to be a superhero of sorts,  During those quiet moments, you feel like Clark Kent.  You feel vulnerable, weak, and absolutely human.  Yet, during those strong moments where your sick child is watching, you adorn yourself with that cape of strength that you have uncomfortably worn for a while now.  You become Superman or Superwoman.  You stay up all night watching the monitors next to your child…

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In Defense of Christmas – A treatise on faith.

I read a blog post the other day about un-Christmasing… or “Why I don’t do Christmas” to be exact. With my recent railings against the over-the-top expectations we put on ourselves this time of year, I expected to like this. I expected to nod sagely in sympathy -to cheer the author on. But I can’t. In fact I find myself feeling a little sorry for her. Oh, I understand the author’s complaints – sometimes they are my own…. the Superficiality, Obligation, Excess, Religious Desensitizing that Christmas seems to condone, and while I applaud her personal conviction to do something charitable as a remedy to what she sees as the rampant commercialism around her — it’s her conclusion that I find so heartbreaking: “this season has more overwhelmingly become a distortion …..a distortion of us as a culture, as humans, as families. And I for one am done.” Done? Really? With Christmas?

Okay – maybe she is. But you know, I for one am not.

Why? Because in defense of Christmas…I think it matters. And because… I believe. I really do.

I believe in Dickens-esque feasting and moralizing about our blessings. I believe in the mystery of Saint Nicholas and of being good for goodness sake. I believe in Jessie-trees and Advent calendars and the delicious sense of expectancy they encourage. I believe in quirky school Christmas concerts and rag-tag manger scenes and caroling in the snow…or rain. I believe in cookie baking and gingerbread making and the life-affirming merriment of it all. I believe that sending cards & wrapping presents & dipping feathers in glitter can be rituals of love and wonder…and that Christmas lights can be amulets of protection against the darkness of the winter’s night. I believe in the mystical-ness of gift giving…that our children can grow to appreciate the spirit of philanthropy and the blessings of bounty that giving represents. I believe that every Christmas greeting from one stranger to another can truly be a wish for only the best things in life. Really.

Yes there is darkness in the world, and sorrow and grief so big that sometimes it threatens to swallow us all whole. But I believe in the light and magic of Christmas….the vast goodness of humanity in spite of all the bad…the joy of the season in spite of all the sorrow…..the love of God in spite of all the doubt. I believe in hope and faith and imperfection and good enoughs and happy endings…and all the trappings and tinsel and colors and laughter that shout to the world this Christmas and always…REJOICE!!!! THE SON OF GOD IS BORN TODAY…PEACE ON EARTH –GOODWILL TO MEN…..Love one another. LOVE one another. 
So I believe in Christmas. – 

Christmas and Cancer

 What do you want for Christmas? Someone asked me and I just can’t for the life of me wrap my mind around an answer. Such an innocuous question and yet it vexes me somehow. Something is wrong with the Christmas music playing here in the atrium….it is stuck on a loop and is skipping. I feel like that too…stuck…looping this fun house version of life that we are living. Caricatures of ourselves. I can’t find my way out. My sweet sweet boy has been replaced by this wounded, broken version of himself. I would complain but as he reminds me “HE’S the one with cancer in case I’ve forgotten” – As if I could ever forget. For one. Single. Second. He is the one whose body is corrupted with so many narcotics that he has become a shadow of his sweet self…. a snarling, ugly, suffering, miserable shadow. He is the one who sleeps 20 hours a day…whose counts have yet to budge….whose fever still spikes each evening….who doesn’t eat….who needs blood and platelet transfusions every day. He is the one with bleeding gums, and fevers, and painful sores, and so many IV’s that the tangled mass of tubing stalks his steps like medusas snakes…He is the one that won’t see his friends, who won’t open the curtains anymore to see the sun..the one that suffers in the depth of despair. I tell him things will get better…I tell him to hold on that we will get past this…I tell him it won’t be long now – that he is strong, that he can do this…..He glares at me hostilely -“thats what you said last week mom, just leave me alone – I need to sleep.” He no longer finds comfort in anything I can offer. I have never hated anything the way that I hate cancer…what this has stolen from my sweet child, what this has taken from my family. Ten days until Christmas. We haven’t decorated the tree, or put up stockings, or baked cookies, or made a gingerbread house, or gone caroling, or christmas shopping, or lit our advent wreath, or used our Jesse Tree ornaments……or even dug our decorations out of the barn. We haven’t sat content by the fire, watching the snow flakes drift lazily by…..no visions of sugar plums for us. We sit hoping Noah comes home. You see families with a child who has been kidnaped by cancer have a very different Christmas experience. We seek ransom – plain and simple. We will do anything, suffer anything, pay anything just to have them home and safe. We pour over lab reports every morning…hoping to see something that indicates an improvement…something that whispers “its all going to be okay.” We ruthlessly watch fever curves and blood pressure and metabolic panels in hopes of seeing something today that says improvement. We watch for C-Diff, constipation, signs of new infection, kidney function….We don’t sit and menu plan our Christmas feast….we pray that our child eats ANYTHING….because soon they will resort to feeding him through a vein in his neck. We sit as silent witnesses to suffering while holding vomit bags and cold compresses and warm blankets as our hearts shatter into a trillion pieces at the helplessness of it all. We listen as they tell of us their nightmares….. nightmares of boogymen and meathooks….images of suffering forever seared into my mind. We cry deep gulping sobs in the hallway bathroom when we think no one is looking….we stalk oncologists, interns, physical therapist, pain management specialists, infectious disease and psychiatrists for test results, lab results, evaluations results…for something that says…we can fix this….trying to glean whispers of hope or encouragement. I watch my sweet boy suffering painful withdraw from IV narcotics as he sobs in his bed. Our news feeds are filled not with pictures of holiday parties, sledding, elves and clever pinterest-inspired craft ideas, lights and good cheer …but with other cancer mommas and their fears and tears and dreams and triumphs… and grief…. Angels here are not harbingers of great joy….but children that were stolen by cancer…children who will not be here Christmas morning to rejoice and laugh and love. Our angel tree has an entirely different meaning. And all the while, I pray and pray and pray….I pray for so many things and so many people each night….but most of all I pray to never be the mother of an angel. I pray that I wake up one day and find this has all been some terrible mistake and that someone has given me my life back..my healthy child back. We do this everyday…and tomorrow we will get up and do it again…because maybe..just maybe tomorrow will be the day…and yes hope lives. It flickers like a candle in danger of being extinguished from lack of oxygen….it requires tending and care and miracles. And Christmas, if nothing else, is about miracles and hope. We cancer mommas know all about HOPE….we breathe it. It sustains us. Hope for better days. Hope for overcoming our suffering and growing stronger and not bitter. Hope for relationships that withstand the onslaught of illness. Hope for forgiveness of our inadequacies and friends that still call. Hope that our “other” children do not become collateral damage. Hope that love is big enough…. to carry us through…to save us…no matter what. HOPE – and a cure. Hope that one day someone…EVERYONE will decide our kids are worth more…that the treatments we have are unacceptable…that there is no GOOD KIND OF CANCER….HOPE that someday EVERYONE will rise up and DEMAND that somebody somewhere do something….and then – only then – will we FULLY fund pediatric cancer research…and make no mistakes, then we will find a cure. Someday. So I’ve answered my question…that is what I want for Christmas…..as I sit here watching the rise and fall of my child’s vitals on the ever blinking display screen over his head…as he prepares for yet another round of poison, of tests, of vomiting, of blood transfusions, of needles, of labs and scans  – as I sit hoping that soon he will be well and we can go home.  Hope and a cure. This Christmas that is enough.