Saturday, August 12, 2017

The Emotional Hangover

For the fifth year in a row, thousands of people gathered to pay tribute to all kids who have been impacted by a childhood cancer diagnosis and to celebrate childhood in their honor at the Mess Fest.  The event was outstanding.  We had more people than ever (which is hard to imagine knowing that 2,000+ people have come year-over-year), we added lots of fun new activities, Peppa Pig was everywhere, the media coverage was what dreams are made of, and there were so many VIP families that touched my heart and made it that much more special.  The day before the Mess Fest, I felt Ty’s presence and it was SO STRONG that I was immediately at ease.  I can’t explain it, but somehow he communicated to me that it was going to be amazing, and I was 100% confident in that notion, enabling me to thoroughly enjoy that magical day.

An event of this magnitude takes months upon months of planning, and an army of dedicated Board members and volunteers who work so incredibly hard to pull it off.  My gratitude for them brings tears to my eyes.  

The most amazing part of the day was seeing the VIP kids who we honor at various activities, and knowing how far they’ve come!  This is what it’s all about!!!  Right here.  The Mess Fest is for Dylan, and Brynlee, and Chloe and 100+ more honored children represented by these signs.

But for all of the incredible triumphs, and the families of children who are thriving against cancer, there are families like us, whose children are on the "forever" signs.   It was McKenna’s birthday and I thought of her often throughout the day.  For as light and fun and happy I was, I felt equally heavy each time I took a moment to remember the children I know and love on the forever signs.  McKenna's beauty stops me in my tracks, and David is just the coolest kid I never got to meet.  I could go on and on.  Whenever we go through the signs at the TLC Foundation, I am always so touched how everyone treats their photos as if it was one of our own, and we often stroke our hands across their faces as we read their names aloud.  

After such a tremendous high from a successful event that required so much planning, I’ve suffered a severe “emotional hangover” all week.  And I can’t stop myself from getting totally hung up on all of the anniversaries coming up.  Like today, for example. 

Exactly seven years ago I called the pediatrician in the middle of the night to request a call-back.  The on-call physician and I spoke calmly about how poor Ty was whining all night, and couldn’t tell us what was wrong.  Yes, it’s happened before.  We were scheduled for a sleep study in a couple of weeks to test for night terrors or physical discomforts, but I couldn’t wait any longer.  This seemed like more than tired whining.  It seemed like he was in pain.

We agreed it would be best to take him to the hospital.  Someone came over to watch Gavin at sunrise (my mom, most likely) and we drove to Cohen’s children’s hospital.  He was wearing black shorts, reef sandals, and a yellow “NYC Triathlon” t-shirt because Lou had recently completed the race.  I came across that t-shirt recently and chuckled because Bodhi could easily fit into it… Ty was 2 years and 10 months old with a head full of golden curls at the time (Bodhi is not yet 10 months). 

Ty was happy when we arrived at the hospital.  With the exception of tired eyes, he was so sweet and thought the waiting room was very exciting.  The blood pressure machine was a hoot!  The scale… loads of fun!   The adjustable bed?  Forget about it.  The finger prick… not so much.  The nurses adored him.  No one showed even an ounce of concern that he was a child who was sick, because there was none.  He was jumping, laughing, they were as baffled as we were and seemed confused about why we were there.

I appreciate that the pediatrician, however, agreed that his sleeping behavior was odd enough to call for a scan.  She was kind, she was sure it was nothing, but ordered the MRI just to be sure and to help us get to the bottom of it.  I was grateful for her validation.

And from that day forward, August 11, 2010, my baby boy suffered.  And that’s just the cold hard truth.  The suffering began with the very first blood draws/IV lines and it never ended for the rest of his life.  Just like that.  Literally, overnight.  Life as we all knew it was forever changed.

I try to be positive and I often claim that I am a better person because of what we’ve been through, and I do believe that to be true.  I lived in a bubble before cancer – the same one I see a lot of moms living in.  It’s a fine, often happy, neurotic little bubble, but a bubble nonetheless where silly little things have a big impact and criticisms run high – of oneself and of others. 

Starting August 11, 2010, mine popped.  My eyes were opened and I can’t unsee the things… I can’t unfeel the feels.  I experienced a love so deep, and a fire in my heart so fierce, I became a lioness – followed by a loss so grave that I can never feel unbridled happiness ever again (until the day my spirit binds with his again). 

Today I like to think that I am more loving, empathetic, compassionate, and grateful for my blessings.  I live with clarity and perspective.  I try to remember and be grateful for the time I had with him at all.  How lucky was I?  He was mine!!!  That still amazes me. 

It all sounds so positive and admirable, I know, but most of the time I call bullshit on myself.  Because I know that I would still be all of those things, a better person, blah, blah, blah, if he survived.  But I would also be happier because I would have him by my side.   I want the stupid bubble back.  Seven years and I don’t even know who I am when I look in the mirror. 

'It's so much darker when a light goes out than it would have been if it had never shone.' - John Steinbeck

Friday, June 23, 2017

Where's My Baby?

On my way to work today, I stopped at the supermarket to drop off recyclables.  When I stepped out of the car, I had that inexplicable “mom” feeling to double check the backseat for Bodhi.  That, “where’s my baby” feeling that shakes you up for just a split second until you recall he’s safe at home.

After Ty died, it happened to me all the time, but I never had that comforting relief of remembering he’s safe at home.  Instead it would be followed by the immediate sensation of my heart dropping into my stomach, a brick weighing down on my chest, and a knot in my throat because the opposite was true.  In that instant I was sucked back to reality and reminded that he’s gone forever.

Slowly the instinct faded away.  I rarely look for him in my backseat anymore, and although it is a very natural progression, it still comes coupled with guilt.  I don’t want to feel any distance between us.  We are approaching an anniversary where he’s been gone longer than he’s been with us, and that is just too impossible to imagine.  I remain in shock over losing him, and I will feel this way for the rest of my life.  I simply can’t believe or accept all that has happened to him and to our family. 

Ty and I used to spend every day in the car together.  Driving to NYC for clinic, driving to treatments in Westchester, to “school” and Physical Therapy at Blythedale.  I would reach back while driving and hold his foot all the time, glancing back whenever possible to catch a peek at him seated diagonally behind me. 

When I continued on my way to the office this morning, driving what used to be our usual route on 22 South, I started playing “I Spy” out loud.  “I spy, with my little eye, something…. Green!”  I gave clues to the empty backseat, “it’s not up high in the trees… it’s down low on the ground…” and I tried to recall the sound of his weak little voice saying “gwass!”  After the next challenge, “I spy with my little eye, something… white!” I immediately felt pathetic and desperate.  These intense feelings come on so strong and out of nowhere, sometimes.

Then again, maybe it wasn’t out of nowhere.  It was Gavin’s last day of second grade today.  I thumbed through his elementary school yearbook and identified all the kids I remember from Ty’s preschool and I’m in awe of how much they’ve grown – many of whom are moving up to Middle School next year!   Social media has been filled with graduation photos, and first/last day comparisons.  Friends are making signs and going to the school to pick up their kids in celebration.  But I just can’t find the energy to pretend today.  I wanted to take Gavin to Splash Down or something special, but I think I’ll simply leave work a little early, snuggle him, and just survive today, instead.  

It looks like rain is in the forecast for the next couple of days here in New York.  When you see a muddy puddle… please… you know what to do.  Just do it.  Jump in.  You’re never too old.  Let’s celebrate our kids, and rejoice in our children who are growing up, graduating, living life and loving it!  XOXOXOX.  I’m so proud of them all.

Bodhi and Gavin watching TV together - my heart is exploding!

Thursday, December 22, 2016

The Birth of Bodhi

photo credit: Catie McCabe

Bodhi Ty Campbell
October 18, 2016
8lbs, 9oz. 20 inches

Bodhi (pronounced BO-dee).  A Sanskrit name meaning “Awakened” or “Enlightenment.”  The Buddhist concept for Bodhi is spiritual awakening and freedom from the cycle of life.  Bodhi is also the name of the sacred tree under which Buddha sat and obtained his enlightenment/nirvana.   

We had trouble agreeing on a name for our baby boy for the longest time.  Then, after he was born, Bodhi just seemed to suit him perfectly.  Lou and I have been through our own spiritual enlightenment on so many levels, it just sounded right. 

Everyone wants this story to be beautiful.  A light at the end of the tunnel.  The rainbow after the storm.  Sadly, the birth of Bodhi was much heavier than it was happy.  It was more painful than I ever imagined.  And it has taken me 2 months to share this truth openly and honestly.

Physically, I was okay.  It is the emotional pain that has been so unbearable.  Now, eight weeks later, I can finally say I have recovered from the deep sadness that has weighed on me ever since this little soul was born.  I can finally see him for who he is, without searching for something more. 

Upon checking into the hospital early that morning, I was so lucky to walk into a very quiet maternity ward, greeted with friendly smiles, and escorted to my serene corner room where I would deliver the baby that my heart yearned for over the years.  The girl checking me in recognized my name, and we shared tears over Ty. Then my nurse came in and said she followed Ty’s story for years, and she would take the very best care of me.  I wasn’t even surprised that my angel would have arranged this for me.

“This is going to be perfect.” I thought, almost as if to convince myself, but I was already feeling like everything was all wrong.  It was wrong because this wasn’t supposed to be my life.  Nothing felt the same as it did when I was in labor with Ty and Gavin, and the flashbacks began rolling in.   With every contraction I couldn’t help but think “this is nothing compared to what Ty experienced.”  I re-lived seeing him in his hospital bed after so many painful surgeries, when he was suffering with MRSA meningitis, when he would tell me his head hurt, or his mouth “not work.” 

When Gavin was born labor was fast and intense. I was certain labor would be even faster the third time around so I didn’t hesitate to call for the epidural.  This time, however, labor was slow and steady.  Uncontrollable tears rolled down my face as my legs went numb because I couldn’t stop wondering… “Is this what it felt like for Ty when his arm suddenly slipped from around my neck that night?” In an instant, my four-year-old super hero lost his ability to walk and could barely move his arms or hold up his head.  How did that feel for him?  What was going through his mind when all of a sudden he was robbed of these most simple movements that most of us take for granted.  I couldn’t walk and my legs felt so unbearably heavy - but for me it was only temporary.  How unfair it was to think my son endured this feeling of helplessness for six months until he died. 

I tried to get comfortable in my hospital bed and wondered if Ty could feel me when I used to lay down beside him among the countless wires post-surgery.   Each time I winced in pain, I was ashamed of myself, knowing that the labor pains I was experiencing didn’t compare – not even close – to what my young son endured for 2 and-a-half years with such bravery.  These are the memories I try not to think of, but being in the hospital made it impossible to avoid.  Every procedure.  Every time his skull was opened.  Every infection.  His cries when the head pain would come and go with waves of intense pressure.  These are the thoughts that consumed my day.  I was unable to focus on the new life that was being brought into this world.  I could only think of the loss.   

Bodhi was born in the late afternoon, and I was immediately in awe of him.  I felt so light, it was almost as if it wasn’t really happening.  My first thought was that he looked so much like Gavin, but with more hair.  I looked for Ty in his face without finding much resemblance beyond a hint here and there.  Bodhi was placed on my chest and I could barely believe it.  A new soul.  A baby!  What a beautiful life I want for him. 

Over the course of the next few days, so many people came in and out of my room.  They had a lot of advice on caring for the baby, getting comfortable at the hospital,  and making sure everything the baby is exposed to is clean and sanitary (I had a kid with cancer, believe me, I get it).  None of them realized just how experienced I am with hospitals.  Nor could they imagine just how hard it was for me to be a patient there. 

Coming home I found myself even more weepy.  It’s so unfair that women go through all the pain of labor and what it does to your body, only to go home with such heightened hormones that can truly make you feel insane.  Why can’t they be happy hormones?  Couple that with the intense grief I was suffering and a newborn that cries constantly… that’s where I was at for the first six weeks.  I was an absolute wreck. We are just now finding our groove and falling in love. 

There, I said it.  We did not have a fairytale “birth story.”  Bodhi was a screamer, and it made me want to pull my hair out.  I felt fat, ugly, old, and incapable.  And it took a lot longer than I expected before I started feeling better.  I’m relieved to say that I am better now.  That this beautiful baby boy has blessed our home with new energy and excitement.  Gavin is the best big brother, too.  He’s so proud and so helpful.  I just love watching them together.

How I wish Ty was here, but I know he is watching over his brothers every second of every day.  There was a ladybug crawling on my window at the hospital – the first of many signs that he was there all along.  It’s not the same, and it will never be okay, but I am coping with this reality and I do know I am blessed. 

Be sweet, Bodhi.  This is only the beginning.  
Merry Everything to Everyone.  

Sunday, October 16, 2016

He is gone. He is here. Four years without Ty.

The ladybugs came today.  Our house is covered with hundreds of them.  How fitting that they came on this day… the day before the anniversary of his death.  When our house was so heavy with his absence, he sent them in undeniable abundance to say, “I am here.”

They say it’s therapeutic to tell the “death story” of your loved one.  I don’t disagree with this theory.  With the anniversary of Ty’s death tomorrow, I have been reliving his for weeks.  More and more vividly as the days get closer.  It makes me weep beyond control while it simultaneously reminds me how certain I am that I witnessed his spirit being lifted elsewhere with my own eyes, and I saw real peace wash over his.  I have no idea what Heaven is, but I do know with certainty that it is REAL.  I know this, because I saw my beautiful boy go there exactly four years ago.

Instead of retelling the story of his death this year, I want to tell you about how he has given the gift of life to one very special person.   I am grateful for a woman named Nadine, who was once a stranger and who is now a true friend.  Let me explain.

Some of you may know that several of my loved ones – like so many (too many) – have struggled with addiction.  In fact, Lou’s brother Jimmy died from his alcoholism just six weeks after Ty was born.  I remember our last conversation over the phone vividly and I am so grateful for that memory.  He was calling to congratulate us on Ty, and he ended the call saying “I love you.”  That was the last time I ever heard his voice.  Ty learned to say goodnight to Uncle Jimmy every night as he ended his prayers, and I have beautiful visions of Uncle Jimmy there to welcome him into heaven.  They are both free of pain and at peace.  

While I don’t understand from experience how a vice can have such control over a person, I do know and completely accept that addiction is as much of a disease as cancer.  And addiction can have a worse prognosis than some cancers.  That being said, every single day – albeit impossibly hard – an addict has a choice that my son didn’t have.  It was that truth that helped Nadine to embrace Ty’s story as inspiration for her own recovery.  

Nadine struggled with alcoholism for 30 years.  When she started following Ty’s story in 2012, she was in a terrible place.  She came to love him, and she began talking to him after he passed away.  She recognized the unfairness of the fact that he wanted so very much to live… yet, he had no choice but to pray for a miracle.  Whereas, on the other hand, she gave up on life completely despite the fact that she had a choice/the ability to try and turn it all around.  

I like to imagine that it was Uncle Jimmy who first found Nadine.  This wonderful woman who has so much love to give, yet who spiraled down his same path of destruction.  She loves children and was known as Aunt Nadine to dozens of little ones in her lifetime. Uncle Jimmy saw all of this and sent Ty to be the angel on her shoulder.  Ty has been with her every step of the way to sobriety, and he will never leave her side.  I mentioned that she mailed us her three-year sobriety coin on his 4th birthday, which is such an incredible milestone.  He saved her life, I know this in my bones.  

Ty had such purpose during his short time here on earth.  He touched so many lives.  I can’t help but cry when I get such reassurance that he also serves an even greater purpose in spirit.  He guides us as we work to fund research for children like him.  He finds others who need him, like Nadine, and he cares for them.  He is an incredible soul, and sometimes I can’t even believe that God allowed him to be mine.  

Pasted below is a triumphant post from Nadine, in her own words.  Her love and beauty spills right off the page.  It’s no wonder Ty loves being around her.  

"STAYING DRY FOR TY" BREAKING RECORDS.............Today I broke my own personal record.  This is the longest I have not had a drink since I was 19 years old, I am now 55. Oh Ty, how do I thank you??? How do I thank your beautiful mommy for putting her agony into the words that would help save my life???? Momma Cindy's blog came to me in the last stages of alcoholism, when you know you are headed to the end and you welcome it. My days were spent in fear, self-loathing, and hateful bitterness. Ty's story was perfect – another reason to read, cry, and convince myself that this life was crap. But there he was.... one of the most beautiful boys I had ever seen, fighting for his life, still smiling, in his extreme weakness, still loving. He was left with no choices, praying for a miracle was all that was left and it didn't come. I heard a voice in my head "YOU still have a choice," and I did so I made it. “Staying Dry for Ty” became my mantra. I hated myself… but I loved him in his videos, pictures, and stories, his story became my lifeline. A bond formed between me and the memory of this boy. I took it everywhere with me, even a few times to the liquor store where I would sit and stare at the door, but "my miracle" had come at a steep price and there is no way I could dishonor it. Now today, I am a vibrant, sunny, smiling and sometimes annoying healthy happy woman. It is not easy, it never will be, a 30 year addiction does not just go away......EVER. But those days I muddle through knowing it will pass, thinking of all Ty went through. Easy doesn't teach us anything and I want to Live, Learn, and Love and fully clearheadedly experience ALL life has to offer. Ty Louis Campbell I love you with all my heart and Mommy, Daddy, Gavin, and baby Campbell too. Thank you Ty. Until my sober soul meets your sweet cancer free one, you can bet your last blue lollipop I will be ''STAYING DRY FOR TY'' And for all those still fighting cancer and addiction, and those who have left us, we are still here, we love you, and we are fighting.

I am so honored on Ty’s behalf.  It comforts me to no end to know that he has done something amazing in the four years he’s been gone. Like Nadine said, “I will never know for sure until we meet, but I guarantee there is something very special about your boy and the proof is that I am here and writing you today!”

It’s almost impossible to imagine that four years have passed since I last looked into his eyes, kissed his lips, or ran my fingers through his hair.  I swear I can still feel his skin on my fingertips, and hear his whisper in my ear.  I think it’s because he never really left.  He is with me wherever I go.  Thank You for loving him and for giving us all such tremendous support over the years.  I am grateful for everyone that Ty has brought into my life.  It feels like I’ve lived 100 years without him, just as much as it feels like he left just yesterday.  

Soon we will have a new life in this family, and can’t even write about it because my emotions are so mixed up and confused.  All I know is that he is hand-picked by his brother from heaven, which is pretty incredible.  Stay tuned for more on that…. any day now…. 

Tuesday, October 4, 2016

Blue Lollipops for Your Birthday

To Ty, on your ninth birthday...

All day I’ve wondered what you would look like at 9 years old.  How your voice would sound.  All day I have had a weight on my chest greater than most.  I went through the motions like a zombie.    

I slept poorly last night.  Every time I woke up throughout the night, I knew it was your birthday and begged to dream of you.  Instead I’m not sure if I really slept or dreamt at all.  I heard Gavin’s giant footsteps early in the morning, and my first thought was how big he is, and how you would be even bigger if you were still here.  What size shoe would you wear, I wonder?

The day before, I received a package via priority mail.  It was a wrapped gift just for you – so I placed it next to your picture.  Gavin has been dying to open it, so it was the first thing he asked to do this morning.  It was one of the most special gifts we have ever received – a 3-year sobriety coin that Nadine says you helped her achieve after 30 years of addiction.  Thank you for giving her the strength to face those demons, you are a true guardian angel and you saved her life.  I couldn’t be more proud, and I will cherish your gift forever.

I often imagine two lives other than the one I’m living.  In the first life, you never got sick.  You are strong and athletic, tall and handsome.  You and Gavin are inseparable, and your little baby brother wouldn’t be nine years younger than you – because cancer wouldn’t have interrupted our lives.  In the second life, you survived your cancer, but not without the horrific side effects you suffered.  You’re in a wheelchair, I would still puree your meals for your belly tube, and I wonder if I could still carry you in my arms.  There would be no baby brother at all, because I would be too consumed with your care (and I wouldn’t trade that for the world.  There is nothing on earth I would rather do than take care of you). 

Did you see me crying this morning?  I hope it didn’t make you sad.  I need to feel sad like that sometimes – it helps me feel closer to you.  After your brother got on the bus, I rushed home and collapsed into the couch with loud, ugly tears.  I cried for an eternity until I felt like a balloon – every last bit of me swollen and stretched – somehow I fell asleep on the couch.  Grief is exhausting. 

I woke up soon after with a jolt, and knew I had to get out of our sad house right away.  Ironically, the weight of the day made it impossible to move any faster than a snail’s pace.  I showered forever, I made the bed, I moped and moaned as I picked up around the house.  On my way to the office Daddy called.  We decided to meet up for lunch, and that probably saved me for some of the day.  We love each other so much, and he is the only one I need when I’m missing you. 

I felt you with me every minute of this day yet I couldn't find an ounce of happiness no matter how hard I tried.  I bought blue rock candy after lunch, and later I decided to go to Hannafords (Heiny-Farts) to get your favorite things for dinner.  I heard your voice directing me the entire time, so I bought a pear (even though I haven’t eaten one in years), filet mignon, ditalini noodles, Locatelli cheese, bacon, and beer for daddy.  Daddy called Ria (the Bakeria in Pawling) and asked her to make a blue velvet cake for you, and the girls at the bank made sure it was properly decorated with blue lollipops.  How incredibly special it was. I couldn't even sing "Happy Birthday" through my tears, but Gavin and Daddy did a good job.  Gavin made a wish, and he told me he felt like you heard his wish and you helped him to blow out the candle.  

It was a foggy, heavy day, with countless teary-eyed outbursts of sadness throughout.  To tell you the truth, I need days like this, to just focus on you and all we’ve been through.  Every single day used to be like this… so I’m proud of how far I’ve come and how much I’ve learned to live with gratitude, despite it all.  I am so grateful for you, Ty.  For the chance I had to be your mommy.  For everything you taught me and continue to teach me. 

Baby boy, I hope your birthday today was filled with heavenly fun - running, jumping, flying and laughing.  I miss you so.  I will see you again. 

October 2008