Thursday, March 28, 2013

You Won't Find Funny Here

I want to tell you a story.  The story of how I learned to breathe life.  Not just live it, but feel it.  Taste it.  Breathe it.  You won't find funny here.  Not today. 

I'm a mother to three beautiful little boys who are all so charismatic and unique you wouldn't believe it.  I'm married to my high school sweet heart.  We've lived in small town USA all our lives.  There is only one high school, we all know the sheriff, and we sit on huge front porches and drink sweet tea in the summer.  We cruised the local Dairy Mart for fun in our teens, we've watched each other grow up and our friends' parents grow old.  We gossip at the local corner store,  we still pull over for funeral processions, and we go to church on Sundays. 

My husband and I are raising our family on a small farm where we have cows and dogs and cats.  We grow corn and cut hay.  The kids jump in mud puddles and climb fences.  They kick rocks and throw walnuts.  We're living the quintessential American dream.  As American as apple pie.  Authors write novels about people like us.  You know, the kind of books that give you hope and a sense of simplicity. 

I thought I knew all about life and how to live it.  I'm in my early 30's, I have two college degrees and three kids.  I know what it means to love my kids, be a good mom, wife, daughter, sister, and friend.  I can drop them off, pick them up, and get them to practice.  I can pay the bills, clean the house, cook their dinner, and do their laundry.  All with a smile on my face.  It's obvious I've got it all figured out.  My priorities are in line.  I have a purpose and know my place.  And I love it.  I'm satisfied and thankful.  I'm so foolish...

Last summer my rose-colored glasses were ripped from my face.  There was no warning.  No caution flag.  My middle son, at the fragile age of four, was diagnosed with cancer.  Leukemia.  My blond-haired, blue-eyed little cowboy.  I had no idea he was sick.  Not a clue.  There were no signs.  No symptoms.  I took him to his pediatrician because I thought he had bronchitis.  Bronchitis.  There was no bronchitis.  There was cancer.  Cancer?  Cancer. 

There are no words to tell what that feels like.  To tell you what it was like to pick up the phone and call his daddy to tell him his baby - our baby - has cancer.  It's serious.  Progressed.  Deadly if untreated.  The next thing I know we're in the children's hospital.  There are doctors and nurses and interns and residents.  Asking questions and starting IV's.  Giving us mounds of paperwork that I didn't understand (and still don't) and demanding that we "Sign here and here.  Initial here."  I felt like they were trying to sell me a used car.  I was angry and confused.  I still am. 

The next day proved to be something straight from the guts of hell....  my sweet baby underwent two surgeries.  The first to place a port in his chest wall, during which his airway collapsed and was placed on a ventilator to breath for him.  To breathe life into him.  That same evening, the right ventricle in his four-year-old heart collapsed.  They took him to emergency surgery to remove malignant fluid from his pericardial sac.  The surgeon literally picked me up and placed me on the stretcher with my baby.  The staff dressed me in surgical scrubs as they were running down the hall with him lying on the bed and me laying right beside him.  Doors were swinging wide open and crashing against walls.  Machines were screaming.  I went straight into the operating room with him.  Laying beside my baby who looked like he was sleeping so soundly.  My left hand over his heart and my right hand on his head.  They let me stay until the entire medical team arrived to drain cancerous fluid from around his heart.  Cancer.  I was later told that they "never" allow that, but they didn't think I was going to see him alive again. That night his cardiac surgeon sat on his bed in the ICU holding my son's hand... "I don't know why your son is still here.  He shouldn't be here, medically speaking, but he is." 

After that the days started to run together.  I was lost.  I thought he was lost.  Cancer.  There was chemo and dressing changes.  There was vomiting.  Uncontrollable vomiting.  There were pills and fluids and cocktails that bared names I couldn't pronounce.  His tears, sweat and urine turned pink from the medicines.  There were tests.  And then there were more tests.  There was uncontrollable feelings of neglect for my other young sons at home that had been left with strangers to care for them.  There were visitors, tons and tons of them.  I started to feel like I was drowning.  Suffocating.  I couldn't breathe.  I couldn't stand to look at anyone, or explain our situation anymore.  I was nauseated by the sterile smells and the sounds of machines and pumps.  I couldn't talk.  I couldn't eat.  I couldn't sleep. 

Two weeks later, I was sent home to care for my baby.  But he was different now.  He was sick.  He was fragile.  He was scary.  He has cancer.  The unknown and the what-if's literally ate at my soul.  I felt out of control.  I couldn't fix it.  I couldn't take it away.  No band aid could patch it up.  A million hugs and kisses couldn't make it better.  I would literally lay in his bed with him at night and breathe his breath in through my nose as he slept.  That sweet baby breath that now smelled of chemicals and salves to protect the bleeding sores in his mouth.  I believed in my heart of hearts that I could breath the cancer out of him.  I dreamt that I could breath it out of him and give it to me.  I prayed for this.  And sometimes still do. 

The days turned in to weeks and the weeks into months.  We made trips to the Children's Hospital Oncology Clinic on a weekly basis.  Sometimes daily.  Because?  My son has cancer.  More chemo.  Sedations and bone marrow biopsies.  Chemo injections into his spine.  Cancer.  Countless cocktails of rocket fuel being pumped into his little body. More hospital admissions than I can recall.  Whole brain radiation.  Blood transfusions, platelet transfusions, and plasma infusions.  Cancer.  Vomiting and dehydration.  Steroid rages.  Narcotic pain medications.  Massive weight loss followed by unimaginable swelling and weight gain.  He was unrecognizable. Where there was once a shock of white-blond hair was now only a layer of thin, veiny, pale skin.  He was shocking and frightening to look at.  Where did he go?  Where was my little cowboy?  No matter where I looked or how hard I searched I couldn't find him.  I could only find cancer. 

The funny thing?  He never saw cancer.  He only saw life.  He didn't change.  I did.  He wasn't scary or frightening or unrecognizable.  I was.  In the time between chemo and vomiting, between clinic visits and spinal taps, he was still living.  He was playing and laughing and running and wrestling with his brothers.  When he could, he was outside jumping in mud puddles and climbing fences.  He is resilient.  He is unbreakable.  And he always will be. 

Our life will never be the way it was before last summer.  But we're adjusting to our "new normal".  His cancer has one of the longest treatment regimens of any cancer.  He'll be in treatment until October 26, 2015.  Three years and three months.  There are no guarantees.  There is a high risk of relapse and complications and secondary cancers.  There will always be the what-if's and the whys.  I'll always be searching for something.  But never for my child. I know exactly where he is and what he's doing.   He's busy living, NOT busy having cancer.  He's busy being a little boy, playing Spider Man and tractors.  Building forts and kicking soccer balls. 

He's still bald and he still vomits.  There are still countless trips to clinic and countless pills to swallow.  There is still chemo and sedations.  There are still tests, and transfusions.  There is still cancer.  But there is also life.  I still lay next to him and night and try to breathe his breath in to me.  But now, I'm not trying to breathe away a disease, I'm trying to breathe in life.  Not into him, but into me. 

"You can either go sit and cry in the truck, or you can COWBOY UP!"





46 comments:

Anonymous said...

You? Are effing amazing...
--JTT

Anonymous said...

I am blown away by the unconditional love and admiration you have for your little boy. Thank you for sharing your story, it has touched my heart and will stay with me for a long time. Your children are so blessed to have a wonderful mother such as you, and you should hold your head up high knowing that your bond with your little boy is unbreakable and nothing can tear away the mutual love between you. You are such a strong and inspirational woman; hang in there-YOU'VE GOT THIS!

Anonymous said...

I concur, amazing. I will cry first, as I already am. Then I will cowboy up. Promise. You already keep me laughing, now you keep me inspired. Going to hug my children now. Yeeha!

Melanie Brening said...

Damn you for making me cry! You are a wonderful writer, storyteller, feeling sharer... I know about breathing their breath... Wanting desperately to wish away the pain and fear. It's a nightmare and I glad you and your son have each other! You are brave and strong and amazing! Love to you and your family.

Chasity Hensley said...

So strong a mother's love and hurt for her child... as a fellow mother of 3 sons, my oldest is 3 my twins are 19 months... I can respect your everyday struggle with everyday life. I don't know this struggle. I can only hope for his triumph, for you a healed heart. I know that your love is not comparable to anything else in this world. Only to that of God. As a fellow blogger that blogs about nothing but the funny-ness of my everydays, you have given me new reasons to pray. I am going to add you and your sweet boy to my list tonight. And every night hereafter. Ma'am. Much love.

Anonymous said...

God bless you and your family. You'll be in my prayers and heart as you and yours go through this battle. And I agree - it's time to cowboy up! Hugs

Tracy P said...

Thank you for sharing your life. Thank you for making me laugh on days when I didn't want to smile. You are a remarkable woman, and you have a warrior for a son. My love and prayers for you and your family. xoxo

Abbey Lile-Taylor said...

You are amazing. And strong. And so is that fantastic little boy of yours.

I am still sobbing. I lost my breath when I read the words, "The surgeon literally picked me up and placed me on the stretcher with my baby."

I'll say it again...you are amazing. I think about you both so often...and pray even more.

<3

Anonymous said...

As a mother to my own blonde-haired, blue-eyed little boy, I can't even begin to imagine watching him go through something like this. Thank you for sharing your story. Sending prayers to you and your family.

Julienne Gagne said...

I am always amazed at the spirit of children. How do we lose that spirit, what becomes of it when we grow up? Children just want to be, plain and simple. A friend had a seriously ill baby (10 months) that due to horrible septic infection lost her limbs. yes it was horrendous, yes the doctors didn't know if she was going to make it, but she did. The day after her amputations, she had learned to sit her own self up in bed to play. Never lose hope, never give up, and maybe we all need to just live! I have loved your page for a long time because of your funny sense of humour. I consider myself blessed to have found you! Hugs and Love,
Julienne

Vivian Hippe Webber said...

Your Little Cowboy has been in my prayers since last summer when your life changed. He will always be in my prayers, along with all of you. You are amazing! You inspire me and my heart breaks for all of you. Blessings. COWBOY UP!

Anonymous said...

I lost my hero to cancer....I know the pain....your writing about your story....impeccably perfect.....here's to your cowboy and your whole family....I hope you guys kick cancers ass!

Heather Wright said...

My heart and prayers go out to you. I found myself holding my breath as I read this. Be strong and know God loves your little cowboy even more than you do! youre an amazing mom :) I don't even know you but am proud of you

Christine C. Moore said...

Life... oh so precious. But excuse me as I sit in my truck and cry a bit for you and other parents going through this. Your strength and his are beautiful.

SaraT said...

This is actually the first post I've read of yours. I am in awe of your strength and dedication. I know you do what you have to do as a mother, I just don't know how you didn't crumble. What a devastating and beautiful story. Thank you for allowing us a glimpse into your real life.

YKIHAYHT said...

I love you so much. This is amazing and beautiful. You are an inspiration to so many, I hope you realize that. Thank you. xo

amauto said...

I will pray the very same prayers

Dalai Mama said...

Thank you for sharing this. It is beautifully written. As a mom to a brave boy born with congenital heart defects, I can relate to almost everything you said about the shock, denial and hurried stress that comes with a devastating medical diagnosis. You were so right on about kids carrying on with life oblivious to the seriousness of their condition. My son underwent three open heart surgeries by 18 months and within weeks of each procedure he sprang back like nothing had happened! Children are VERY resilient and I pray for good health in your cowboy's future! You are amazing!

Anonymous said...

Such an inspiring story. Thank you for sharing it. It is amazing what our children can teach us. Even through the darkest times. Love and prayers to you and your family.

Anonymous said...

My son was diagnosed 5 months ago with pre b ALL Leukemia, he is 3. The tears were rolling down my face because every word you said sounded so eerily familiar :( You remind me, of me. You are one amazing and inspirational lady! May God bless you, your cowboy, and your family! If you'd like to go on this journey together, you can like "Gabriels Journey" on fb, and message me. Ill remember you everyday :)

Deanna said...

Thinking of your little cowboy and family! So incredibly touching.....

Amy @mommetime said...

kids... bless 'em --they are amazing life teachers. They just get busy living. Blessing to you wee one! Blessings to your entire family...

Hugs to ya, Mama~

My Mama heart sends your Mama heart wishes of peace and comfort!

Laura Kirklin said...

This is the first time I have read your blog, the first of many. Thru my smiles and then my tears I realized that amid the many bloggers with nothing to say, I had found a jewel. Thank you for sharing your story. It has touched me and reached me at a time when I, too, need to Cowboy Up. Lots of positive thoughts and prayers being sent to you and yours. I would also like to respectfully suggest that you consider writing a book (or several). You have a wonderful way of touching souls.
Thank you
Laura Kirklin

Laura@Catharsis said...

Oh my gosh. I am in tears. You are one strong woman, and your son is one strong little boy. I felt every sentence and every word. What you are going through is unimaginable, and yet you're surviving. Praying for your little boy and for you.

Peanutlayne said...

I'm sitting here crying my eyes out. This hits me so hard as I grew up around cancer. My older brother died from leukemia 3 months before I was born, and then my mom was diagnosed with lymphoma when I was a child. She passed away in my teens and then my dad was diagnosed with prostate cancer (though he responded well to treatment and is thankfully still with us). I spent the majority of my childhood in hospitals. You described the sounds and smells perfectly. I have 5 kids and my biggest fear is that one of them is going to get cancer. You are inspirational! Beautiful post, although, I can't stop crying. Sending lots of positive thoughts to your little cowboy.

menopausal mama said...

Simply beautiful-- and a poignant example of how a family pulls together through a frightening crisis with love and strength found from deep within. Thank you for having the courage to share this---I'm betting you'll touch the hearts of many parents out there going through something similar.

JustJen said...

I am speechless and tearful as I read your story. Beautiful amd heart wrenching all at the same time. The strength of a mother can never be explained. Just as a child with cancer seems to always be smiling. My husband and I talk about it often. Him being a stage 5 metstatic cancer with aorta rupture and kidney failure survivor. May Your son, tou and family continue to be filled LIFE. Cherish every moment and may the Lord heal your precious cowboy!! Prayers being said!

Funny Postpartum Lady said...

What an amazing little boy you have. And what an amazing mommy he has! Your story is so inspirational! Thank you for sharing this! I hope you don't mind me sharing as I'm sure this will surely inspire many other moms as it did me. I know I will pray for you and your family every night from now own. Truly remarkable you are!

SAHM I Am said...

I love, love, LOVE all of the support from you fine people. WOW!... just, simply, WOW. You're making my heart smile, big time! Please be patient with me as I'm new to blogging... I'm still learning my way around blogger and how to master it. Thank you for reading, but most importantly, thank you for sharing!

Northernbaygirl said...

What an amazing little boy you have. And what an amazing mom he has. Keep the faith. Keep fighting little cowboy.

afra willmore said...

I read this sitting up at 5am with my mildly ill little blonde cowboy. And thanked God that his illness would pass in just days.
Praying for strength, hope and peace for your family while your own cowboy beats the bad guy, Cancer, with the help of medical experts and his own indomitable spirit.

Abbie Blueher said...

God bless you and your lil cowboy.

Ingrid Oliphant said...

_/\_ You've SO got this!

Jen said...

You and I are living parallel lives. Only we are further in. I'm still angry too. Our kids deserve better. Bless your lil cowboy.

Anonymous said...

The journey seems long and scary right now. and it is. But remember, he is only four once. Don't wish it away or dream of fast forwarding to the end. You have the right idea, breathe it in. My son is now nine. Diagnosed PreB ALL right before he turned four. The other side of this journey will find you with deep grooves down your face from the tears you have shed. But also with an amazing appreciation of all that is the human experience. It is a beautiful life. Keep breathing it.

Sending love and prayer

Anonymous said...

Amazing story! Your little cowboy has an angel for a mom! Your story will give countless others inspiration and hope! Keep your head held high and your arms wide open for your amazing little boy!

Anonymous said...

This needs to be written up in a pamphlet or small booklet and given to all those facing this journey that you are on.
This is so open, honest, heartfelt, so deep into the guts of this monster called cancer.
I can hear the raw agony, and feel the painfulness of not being able to take this from your son.
You are an amazing woman, and you would do a service to many others who are lost in the pains of dealing with this Devil Cancer.
I hear your heart crying, I feel your pain. God Bless you and Fuel you with the courage and the strength for the long haul ....sending prayers your way for a miracle. <3

Kim Constable said...

I have followed you on FB for a while and always have loved the stuff you post and share. I knew your little boy had cancer from something you shared previously, but I had managed to block it out I suppose, as things like that really upset me. However, I am sitting reading your post with tears rolling down my face, and my body wracked with pain as I read your words. For as a mum of four, I can understand and relate as if it was my own child. I feel your pain as if it was my own pain. And every inch of my being wishes I could lie beside you, and breathe away your pain, just as you do for your little boy. Writing that post must've been incredibly difficult; sharing it so publicly, even more so. You are tremendously brave and I am inspired by you. If you can take any small amount of consolation let it be this: your post has reminded me to never ever take my babies for granted. To cherish every single moment with them. To never say I'm too busy for a snuggle. Life is so short. I am sending you all the energy and love that I have in me, and wish him a very speedy recovery. With love, Kim

Anonymous said...

Thank you for putting into words what my heart feels. I've breathed my babies breathes many times hoping, praying that this breath was going to be the one to take his cancer away. So much love, hugs, and prayers from our family to yours.

Emily Newkirk said...

I am done smoking! I am so selfish to have healthy lungs and thumb my nose at it while beautiful little guys and girls suffer each and every day.I am terribly sorry for you and your difficult journey, I admire your baby and you for all of your strength, wherever you find it! I have tears streaming down my cheeks at the image in my mind of you in the operating room with him. I am forever changed by what I just read, thanks so much because I am going to appreciate every little moment a little more and each day pray that this little boy who I don't even know gave me a swift kick in my butt to make me appreciate this beautiful life we all unfortunately take for granted. Stay strong, you're amazing!!!

Lucy Ball said...

Wow. You are so strong. And we all need to be grounded by each other. Just when I get caught up in my mind and my worries, I find someone like you who reminds me just how fortunate we are and how we all have different burdens to carry.

Anonymous said...

Thank you for so eloquently putting into words what I have felt for the 3+ years since my 6 1/2 year old little baby boy was diagnosed with Ewing's Sarcoma. People keep saying he gets his strength from me, but they are wrong. I get my strength from him. The children are simply amazing.

Anonymous said...

I sympathize with your situation. But imagine your child with a mental illness. People understand cancer. They don't understand mental illness. Your child looks fine. It must be you (the mother) You don't discipline enough, you let them get away with too much. Yes, my child MAY survive. Maybe not. I can't give her pain pills or chemotherapy. She may live for many years. But what quality of life? Relationships? Questionable. Independence? Questionable. A long painful road and I can't help.

bluecottonmemory said...

Tears - at your mama heart and your cowboy's journey! Been praying for you and your little guy - my MIL let us know (we're somewhere on the same family tree together). Got yourself a little John Wayne cowboy there - taking on the bad guys, remaining noble - and overcoming! What you've shown us on facebook has been grace and hope and strength - what you've just shown us now is the emotional battle that grows that grace:) so sorry your family has had to experience cancer - we still miss our FIL everyday who died from cancer. Yet - I believe that when God is involved in the hope and healing process, it's like buttermilk and baking soda - amazing things explode and grow and become! Your family will continue in our prayers:)

Anonymous said...

Praying for God to give you strength!! You are a strong brave woman!! And your little cowboy....I'm so sorry he has to endure such pain but his story is touching lives of many!! Keep holding him and breathing in his breath as often as you can!!

Marsha Jones said...

Thoughts and prayers are with you and your family.....especially Drew. You have been amazingly strong and an unbelievably loving mother. Riding on that gurney with your son as he was going into surgery, touched my heart and I'm sure the hearts of many others. Take care and God Bless You and Drew.