Thursday, October 31, 2013

One year later and I don't feel better

My head is just reeling.  I am not even sure what I want to say tonight.  Obviously, I am so sad about Halloween tomorrow.  Every time Gavin's eyes light up over the prospect of putting on his Ironman costume tomorrow (Iron Patriot, to be exact) I am reminded of Ty in his Iron Man suit.  My plastic pumpkin is sitting by the door filled with all sorts of gross, spooky Halloween candy that Ty would have loved (like gummy organs and chocolate ears and bags of "blood") but it doesn't bring me any joy because Ty wasn't here to look at the catalog and pick them out for me.  I promised him I will always have great candy on Halloween, and I hope he knows that I am keeping that promise.  He enjoyed opening to door for trick-or-treaters and giving out candy more than he enjoyed trick-or-treating himself.  Tomorrow I will reluctantly carry on the tradition for Ty - and of course, for Gavin.

There has been so much about this one-year anniversary that has been making every day harder than usual.  I was doing so well for so long, and lately all of the tiny little pieces that I was slowly putting together began to crumble again.  Lou has been going through the same emotions.  One year later and the pain of losing our son feels so much more real.  It feels like we spent a year surviving, getting by, learning to smile again, escaping... and now we are faced with the reality that it still hurts just as much and the only difference is that 365+ days went by and he still isn't coming back. 

I got in my car last night and it was the first time there was a real winter chill in the air.  I drove around thinking about how soon these trees would be covered in snow.  Then I tried to remember last winter, and I couldn't dig up one single memory.  I thought to myself, "I know I lived an entire winter without Ty, but I can't remember how?  What was I doing every day?"  Technically, I know the answer of course.  But in my mind it's like it didn't even happen.  Apparently, I am not alone in this phenomenon.  I keep in touch with other grieving parents and I guess this whole one-year sinking-in feeling of all-around awfulness is part of the grieving process.

I have also been weighed down by tremendous guilt lately.  Guilt that in my heart of hearts I know I don't deserve, but I can't stop it from suffocating me.  I am consumed with thoughts of Ty's suffering.  I was his Mommy.  I was supposed to make it better.  To protect him.  And instead, I stood by his bedside, helpless, holding his hands while he begged me to stop the nurses from sticking needles into his chest.  And those needles were the least of the horrors that he endured, all while I stood by watching.  Whispering "I love you, everything is going to be okay."  Lies.  It was all lies!  How can I even live with myself? 

When he was home during his healthier cancer days, we still had to go to the hospital to get accessed for bloodwork every week.  He always seemed to know something was up.
"Mama?... Where we goin?... Mama?.... Where are we driving to?" with worry in his voice.
"I don't know baby, just for a drive," I would say, so he wouldn't scream and carry on the entire 20 minutes.  Every time I pulled into the parking lot the tears would flow and screaming ensued.  He would beg me not to go inside.  I wonder if he felt betrayed.  One time he got so physical with me, he "escaped" down the hospital hall - scooting away from the blood lab and screaming "no, no, no I won't let you do it!"  How defeated he must have felt every time to have NO CONTROL in those decisions.  He was proud to have gotten so far down the hall, only to have me reluctantly march over and pick him up to bring him back to the room. What choice did I have?  I wonder if I should have handled that differently.  In hindsight, I think there are a lot of things I should have handled differently.

Please understand that this is a cleansing for me.  It feels good to release the truth about what I'm thinking when I reflect on Ty's treatment.  I know that we did all we could do.  Every decision we made for Ty was made out of pure love, with his well-being the most important factor.  We had such tremendous hope that all of his suffering would reap the greatest reward and he would go on to live an incredible, inspiring life.  Now I just need to learn to accept that we didn't make any wrong decisions.  That the outcome was never predetermined, and we did all the right things to try and save our baby.  It's just so unfair that we even had to make such decisions.  It's even more unfair that he won't be putting on a costume tomorrow.  He was just a little boy.  A sweet, innocent, perfect little baby.  And he was mine - I consider myself the luckiest person alive, regardless, because of that fact alone. 

Our entire family has been pretty in sync lately.  Even Gavin was having one of those days today.  He mentioned his brother twice today, once when he saw the letter "T" and once when he was telling me about how he wants to draw a family portrait for Lou's birthday present (Lou's bday is next week). 
"I will draw you, me, Ty, Mely and DAD-DY!" he said proudly

After his bath he made a sad face in the mirror.  He asked me if I remembered when he cried for Ty and said "I want Ty to stay."  I said, "yes, I remember, and I wanted Ty to stay, too."
"Bad God!  I am MAD at God."
"No baby, don't be mad at God.  God helped Ty get better by bringing him to Heaven."
"No!  I say BAD God, because I wanted Ty to STAY!  I wanted him to go to the HOSPITAL to get better, not HEAVEN!  AARGH!" 
I pulled him up on my lap and told him that heaven is better than the hospital and that he will get to see Ty in heaven some day.  He started to ask me about Heaven, and I never know what to say. 
"What's it like in Heaven?  Are there ladybugs?"
"I think so," I said.  "And rainbows, and lots of other children, and all the candy you could ever want.  I think heaven is really beautiful.  And FUN!"

He seemed okay with that.  My sweet boy just misses his brother.  I can certainly understand that.  Halloween will never be the same, but I vow to enjoy it with Gavin because Ty wouldn't want it any other way. 




Friday, October 25, 2013

You know what I love?...

You know what I love?  I love that I see the world with my eyes open.  I love that I imagine, and truly believe, that every falling leaf is channeling Ty's free spirit as it softly dances in the wind.  I love that when a sunbeam lays across my face unexpectedly, I feel like it is a warm kiss from heaven.  I love that when the gentle wind blows, I turn to face it and accept my hugs.  I love that Ty gave Daddy a ladybug this morning, when he was already having a very bad day.  I love that Lou doesn't look at me like I'm crazy anymore,* because it is too magical not to believe. 

*just to clarify, Lou knows I'm all sorts of crazy, just not when it comes to Ty's ladybugs.

It goes without saying that I wish I was living my life with the blinders on, as long as Ty was with me, but I had no choice in that matter and I am at least grateful for how he has changed me.  He has changed a lot of people in so many ways. 

Today I spent a lot of time working on promotional materials for the Muddy Puddles Project 2014 - and I am so excited for what we hope to accomplish next year.  Thank God I have the foundation to keep me pushing forward.  I can't help but believe that we are going to continue this landslide of fundraising, enabling us to make a difference. 

Have you seen this video of Gabriella Miller?  Can she be any more lovable?  She was put on hospice care just days ago, after making this video for the Truth 365 awareness campaign (the clip below is actually her adorable outtakes).  I can't tell you how defeated I felt learning the news and then watching her incredible personality shine through knowing what I knew.  I have to keep telling myself that it isn't going to happen overnight, but it will happen.  It will get better for these kids.  I just get so angry knowing how many beautiful children will have to die before those changes come to fruition.

Today Gavin asked me "when am I going to heaven," and "can I share my carrot muffin with Ty in heaven?" and "does Ty even eat in heaven?"  I love it when he talks about Ty.  So very much. 

I uploaded some recent pictures of Gavin, doing your typical Fall duties - like the quintessential trip to the local orchard for some apple picking, enjoying an episode of Franklin with the class pet (named Franklin), and of course, pretend slashing an Avengers punching bag with your wolverine claws while sporting a Rudolf nose.  He cracks me up :)  I thank God for him every day. 

Good night.  As always, thanks so much for your continued love and support. 

Sunday, October 20, 2013

Tats for Ty

This one year anniversary has sucked the life out of me today.  Lou and I have been going, going, going until today, and as usual the slowdown brought on severe sadness.  We have been talking about Ty nonstop today.  Moping around the house.  Wiping silent tears.  It always seems to hit us hardest when things are quiet (I guess that's why we so rarely quiet down in this busy, crazy, beautiful life).  I start cleaning and organizing and I come across so many of his things.  Like today, when I found his "guy" in a box of art supplies.  A silly little green alien that he once got as a prize after getting his blood work at the hospital.  He called the little green thing "my guy" and carried him around for weeks.  I am so fearful of the day when I clean out a closet or a toy chest and don't find his drawings, or stickers, or a toy he once loved.  Because those instances are becoming less and less one year later and that reality is simply depressing. 

The weather has been perfect and our great friends were in town from Virginia for the weekend.  We spent a lot of time outside with the kids, and I kept my eye out for ladybugs with no luck.  I didn't say anything, I don't like to expect a sign from Ty because I am so very scared of being let down.  Today, when the sadness really set in, Ty lifted me up with a ladybug once again.  This time I went out on my deck specifically to look for a sign.  I broke my own silly rule and I asked Ty to please send me a ladybug today.  The first thing I saw on the ground was a ladybug corpse :(  I thought to myself, "well, maybe he did send this ladybug but I just didn't see the poor thing in time?  And now she's dead, and so is he."  Great.  That certainly didn't make me feel better. 

Gavin was looking for me and called me back inside so I could get him something to drink.  I left the door open to the outside and after a few minutes I went to shut it.  My ladybug was right there on the screen door, and she was huge!  How amazing is Ty, right?  I called Gavin over and he was so excited, too!  We talked about how Ty was visiting, and how happy we were because we miss him so much.  We played with the ladybug, let her crawl all over, before letting her outside to disappear on her own.  Immediately after that, Gavin wanted to make a ladybug craft to hang on our refrigerator.  He is so sweet, he keeps me putting one foot in front of the other on days like this (and every day, really). 

On Thursday, Lou and I got our tattoos at Wooster Social Club in Manhattan.  The same place where NY Ink is taped.  We had a great artist, Eddie, and he was very understanding why these tattoos were so meaningful to Lou and I.  I never thought I would love having a tattoo, even when I decided to get one for Ty I wasn't sure whether or not I would like it.  Turns out, I love it.  LOVE it.  Every time it catches my eye I smile with satisfaction.  A forever reminder of my beautiful Ty, my gratitude to him and to God for having the chance to be his Mommy.  My gratitude for all the amazing people Ty brought into my life, too.  And my gratitude for how he changed me and made me a better person. 

Lou's tattoo is so cool.  He decided to put the number of days that Ty lived right above his collar bone, but he had it written out in a mirror image so that he can read it always.  After all, the tattoo is for him and for Ty above all, so it makes sense that he would be able to read it best.  My handsome husband looks even more handsome with his new ink :) 

looking in the mirror
 After spending the day in the city, we headed down to Long Beach.  The following day we had to meet with the artist to put some final touches on Ty's statue, so Gavin slept at Nana's while Lou and I spent the night in our old hometown.  It was late and dark by the time we got there, so of course the playground was closed.  We climbed the fence, regardless, because we needed to be with Ty.  We hugged his cold, bronze statue, kissed him on the lips, talked to him, brushed the sand off him, etc.  Thank you to whoever left the flowers with him.  There were two different arrangements, and it made me so happy to know he is being taken care of when we are not around. 

There's no where else we wanted to be other than that park.  I can't tell you how wonderful it is to have such a special place to go and "see him."  I truly feel like I'm visiting with Ty.  It doesn't make it hurt any less, but the experience is as bittersweet as it is beautiful every time.  Lou and I went out to dinner afterward, we drank too much, then we spent the wee hours of the night holding hands down by the ocean.  Surprisingly, we didn't cry while we were on the beach.  We smiled and looked out at the incredible ocean and thought "how can anyone question whether there is a God when we live with such beauty."  I look out on that horizon with nothing but confidence that Ty is out there.  Of course I have my dark moments, but I never doubt that I will see Ty again.  The hardest part is imagining how long I'll have to wait.  If I miss him this much after one year, how can I possibly wait decades upon decades?  It just seems too impossible to imagine. 

I received a message the other day that reminded me of the quote "the days are long but the years are short."  It is such an appropriate statement when relating to how our children grow so fast, but it is also such an incredibly relevant statement to this entire grieving process.  I can't help but nod in agreement with how very true it is. 

One year down.  One year closer to seeing my best good boy again.  XOXO.

Thursday, October 17, 2013

Remembering Ty - One year later

This link will take you to the video that Lou shared with me on my birthday.  The best birthday gift of my life.  It is long, and so very painful for me to watch - but every time I watch it I smile more and cry less.  My beautiful, beautiful baby boy.  I feel like he is right next to me again.

One year has passed.  How did we survive 365 days without Ty?  I don't even know.  I honestly don't know!  Lou and I spent the day together, reflecting on our last day with Ty.  Reflecting on his last breaths and the time we spent with him afterward.  We are numb.  Even after a year, we are still in shock and disbelief that this happened to us.  More importantly, that this happened to him

Our tattoos are bandaged up for now.  I will share them over the next few days.  I am so NOT a tattoo girl, this is my one and only, and I am surprised to say that I love it so very much.  The entire time it was getting done I focused on Ty and all the needles he endured.  It hurt so bad at times, but the pain was brief and fleeting - unlike the profound pain in my heart that I live with every day.  I was actually disappointed when he was all done because I wanted to have more time in that chair, thinking about Ty, wincing at the gratification of the real, physical pain I was subjecting myself to in his honor.   I am so happy to have this forever tribute to him on my arm. 

While Lou and I were in the city, my friend texted to tell me that there were ladybugs all over Pawling today.  Surely we all know why.  I haven't seen any yet, but then again they didn't start appearing in my life until I came home after Ty's cremation on October 18, so I do expect to see some in my backyard tomorrow :)  

Lou and I are now in Long Beach.  We are going to visit Ty's statue at the park, and tomorrow morning we are putting the final touches on it by securing the plaque.  It feels a little strange that we aren't home where we were last year, but at the same time we are certain Ty followed us here. 

Pasted below is my blog entry from October 17, 2012.  Ty will be forever missed.  I said it then, and I still agree one year later.  Just because he wasn't healed, doesn't mean we didn't all witness a miracle.  Over the past few years, I've seen several.  Ty Louis Campbell's existence alone was a miracle.  I still believe.  I hope you do, too. 

Our baby is finally free.
Rest in Peace, Ty Louis Campbell

Ty Louis Campbell is gone, but his story continues.  This is our promise to him.  His impact on the world around him gives his short but inspirational life such meaning.  His soaring spirit will continue to fuel a fire in our hearts, and strangers around the world will continue to fall in love with the little boy who fought so valiantly.  The little boy who hurt so much, but maintained a bigger, brighter smile than the healthiest of children. 

 Ty never did break his fever.  He never really woke up.  Not until he decided to leave this earth and fly freely among the clouds.  At that very moment, he was awake.  He had returned to Lou and I to say goodbye.  To say our hearts are broken would be like saying it tickles to have your stomach ripped open with a spoon. 

 I went to bed last night with so much worry on my mind, but I was able to fall asleep because I was calmed by the fact that in his semi-conscious state, Ty seemed so incredibly peaceful and comfortable.  I laid down next to him, I put his arms around my neck, and I fell asleep to the sound of his soft, garbled breathing.  In my head I thought, "If he doesn't wake up around 3 in the morning and ask to go downstairs, he isn't going to wake up from this."  In the morning while he continued to sleep, I sat with my mother and I finally heard the words come out of my mouth, "I think Ty is going to die today."  I didn't want to know this, to feel this, but I knew. 

All morning I was in and out of the bedroom because I didn't want Ty to hear me crying.  I didn't want to scare him or to think he was worrying about me.  I would wander around the house, aimlessly trying to catch my breath before returning to the room once I felt better.  We called the church and asked for the pastor to visit.  We made sure my Dad was on his way, and we had all of our parents here to visit with Ty. 

Around noon, I was finally compelled to just stay in the room.  No more walking around the house.  I am so glad my subconscious helped me settle down so I could stay there with Lou and Ty, holding his hand.  The pastor arrived and he was so kind and gentle.  He helped us say a beautiful prayer for Ty and then he left.  I walked him to the door, came back to the room and the second I turned to look at Ty his eyes shot wide open.  It was as if his eyes were flickering open in a way that I can only describe as magic.  Lou and I couldn't believe what was happening.  We tried to ask him what he was seeing, but he didn't answer.  Lou told me it was time and it took every ounce of my being not to scream and wail and fall to the floor.  I couldn't do that to Ty.  I needed to tell him everything was going to be okay. 

I scooped Ty into my arms while Lou wrapped us both in his.  For a moment, Ty's eyes remained open and I stared into them so intently because I needed to be sure that he was witnessing something beautiful.  I promise you he was.  Through our tears we assured Ty that it was okay for him to go because he was taking us with him in his heart.  Over and over we told him I love you.  We told him how proud we are of him.  We thanked him for letting us be his parents.  We encouraged him to play, to eat candy in heaven and to slide down the rainbows into huge puddles of mud.  His last breath was a tremendous gasp - not because he was gasping for air - it was a gasp like when you witness something beautiful and exciting.  Like fireworks.  I have to believe with all my heart that he was excited. 

When our beautiful nurse came to pronounce him, she was so warm.  She shared with me her experiences and they gave me so much comfort knowing that she witnessed others passing who proved to be similarly happy and at peace.  She also told me that when she came to see him yesterday, she felt very strongly that Ty was already gone.  When she told me that I realized that maybe she was right.  I like to think that he was exploring, being greeted by his friends in heaven and deciding what to do.  When he opened his eyes he was showing us that he was seeing pure beauty and he just was coming back to us to say goodbye. 

Ty's beautiful little body stayed warm for a long time.  I didn't expect that.  The top of his head.  His back.  His belly.  So soft and so warm, we rested our hands there for I don't know how long.  We took turns holding Ty.  Walking around with him and kissing him.  It felt so good to hold him on my shoulder and kiss the crook of his neck without hurting him.  Lou was squeezing him and loving him all up, too.  Finally, to hold him without hurting him felt so beautiful.  We stayed together, just the three of us, for the next five hours or so before inviting our family back upstairs.  I will always cherish that private time we had together. 

After a while, Lou and I gave Ty a warm bath.  Lou washed his head, I washed his feet.  We kissed his skin ten thousand times.  There were as many tears in that tub as there was bathwater, but it was beautiful.  He was so beautiful.  Every inch of his body.  We dressed him in his white suit with a blue pocket square (his favorite color).  We put on all of his jewelry and he is holding his rosary beads from his christening.  We cut his hair for us and we cut ours for him.  We filled his pockets with a blue lollipop from his favorite girls at the bank, a chocolate gold coin, a 2 dollar bill from his great grandfather and some extra money for candy.  My dad put something special in his hand and we have a lot of other things that we will include in his casket tomorrow.  Ty is taking lots of his "loot" with him. 

Right now Ty is still in our bed.  He is all dressed up for heaven.  He has a smile on his face.  I know you all think that sounds crazy, but every single person who has come to say goodbye to him has validated it.  As I am watching his presence leave his body more and more, the hint of a smile on his face becomes even more prominent.  My sweet, sweet, good boy.  He was always quick with a smile, right?  He is telling us he is happy.  It may seem strange that he is still here, but our plan is to have him placed in a casket and then cremated.  If a person passes away after 12noon, he or she can't be cremated until the following day.  Ty died at 1PM and there's no way we would leave him with anyone but us right up until the very end.  We will ride with him in the car tomorrow morning.  We will be with him until the very, very end.  Just as he is with us.  I have felt his presence in this room all day long, and I feel him with me right now.  I hope I can always feel him... at least when I need to the most.  I am so scared for Lou and myself in the days that come. 

There was an amazing prayer chain planned for Ty at 7PM tonight.  All morning I told myself that the prayer chain was my last hope.  I wasn't giving up until then.  Maybe all of those voices asking for Ty's healing miracle at the same time would wake him from his sleep and heal him.  So when Ty started slipping away earlier, I almost yelled "No!  Not yet!  I changed my mind, don't leave us!"  As much as I wanted to scream those words at the top of my lungs, I remained as calm as possible and instead allowed Ty to give us the greatest gift of peace, serenity and ever-lasting presence.  I imagine he saw what an incredibly beautiful day it was today - by far my most favorite kind of day - and maybe he just didn't want to wait any longer.  He wanted to take off into the crisp fall air and fly over the golden trees into the sunlight.

At 7PM this house became flooded with tears.  Lou and I remained alone in the room with Ty to say our prayers before allowing anyone to come up and see him in his suit.  From here we could hear all of our closest family members breaking down.  The cries and sobs could no longer be disguised.  Outside our house were hundreds of people with candles, united in prayer.  In town there was another circle of friends gathered - lighting candles for Ty.  There was a vigil held for Ty in Long Beach on our boardwalk.  All over the place, people were praying for Ty.  What an incredible way to honor our incredible little fighter.  Thank you so much, everyone, for loving Ty and for praying for his miracle.  Just because he wasn't healed, doesn't mean we didn't all witness a miracle.  Over the past two years, I've seen several.  Ty Louis Campbell's existence alone was a miracle. 

I still believe.  I hope you do, too. 

God Bless you, Ty.  Please visit me in my dreams.  I don't know what I'm going to do. 

Tuesday, October 15, 2013

The last of the firsts

Thursday will be one year since the day Ty died.  I have been a fraction of myself for weeks.  I don't respond to so many kind and thoughtful messages because I am so just numb I have nothing to say.  I feel like a walking void. 

The biggest problem I have with accepting this one year mark is the sheer impossibility of it all.  Despite the fact that I miss him profoundly with every second of every day - I am ever aware of his absence - at the same time I still don't fully believe he is gone.  As it approaches, this one year anniversary is shoving the painful reality down my throat.  It's real.  It really did happen.  He is never coming back.  I just lived an entire year without him here with me.  How can that be?

This blog saves me sometimes because I internalize all of my emotions behind a public veil.  Writing like this at the end of the day gives me an opportunity to open the floodgates in my head; get all those jumbled thoughts out.  It also saves me because it allows me to look back on the last three years and remember everything.  It is such a treasure.  I wish I had kept some kind of journal my whole life!  I want to go back and read about what we were doing on October 15, 2009 - before cancer - but it was only when stupid cancer came around that I started doing this. 

Last year, on October 15, I put on a pair of Hulk gloves and started wrestling with Gavin.  It was just before bedtime and Ty laughed out loud despite how sick he was.  He was happy!  Reading about that moment helped my pounding, grieving heart to settle back into my chest a bit.  Tomorrow morning, one year ago, Ty woke up whining very, very early.  I barely slept a wink so Lou got up with Ty and brought him downstairs so I could rest more.  When I came down Ty was already sleeping again and he never woke up again.  I always held such regret for missing out on Ty's last conscious moments.  I missed his last conversation.  I wasn't the one lying next to him on the couch when he fell asleep to an episode of Max and Ruby for the last time.  But looking back and knowing I made him laugh his last genuine laugh has given me such comfort today.  It's the little things that help me cope sometimes. 

Lou and I will take off of work on Thursday, but we refuse to sit around in our sad, sad house.  We are planning on going into the city so we can each get a tattoo for Ty.  I never had a tattoo, it's not something I ever wanted until now.  Now I can't wait.  I hope it really hurts, too.  A forever tribute, visible to everyone, so people continue to ask me about him until my own last days.  We are also going to visit his statue in Long Beach, I can't wait to see "him" again. 

I love you my handsome boy.  Big Much.  My broken heart will forever bleed for you until I see you again.  xoxo. 

Tuesday, October 8, 2013

TLC Foundation Partners with St. Baldrick's Foundation

Pasted below is a very exciting announcement that was first posted to the St. Baldrick's website on Friday, Ty's birthday.  Coupled with our recent donation to fund a fellowship in support of the Children's Brain Tumor Project at Weill Cornell, this second alliance marks the beginning of many more research investments and similar announcements to come.  We are committed to funding the most innovative research, specifically geared toward the deadliest childhood cancers (including brain/spinal tumors, sarcomas and neuroblastoma). 

Since 2005, St. Baldrick’s has awarded $103 million in grants – more than $25 million in 2012 alone. We now have the opportunity to co-fund grants with this terrific organization, minimizing our administrative costs and speeding up the selection process so we can get these much needed funds into the hands of the researchers without delay.  They have one of the most sophisticated Scientific Advisory Committees among all childhood cancer foundations, and as their partner the TLC Foundation will be reviewing grants supported by the leading experts in the childhood cancer community.  We will be able to leverage the St. Baldrick's esteemed funding priorities so that every dollar makes the greatest impact possible.  This is what has always mattered most to Lou and I. 

October 4, 2013 -- Cindy and Lou Campbell founded the Ty Louis Campbell (TLC) Foundation in memory of their son who passed away from brain cancer just after his fifth birthday. Today is Ty’s sixth birthday, and St. Baldrick’s Foundation and the TLC Foundation are proud to announce that we are partnering in the fight to cure childhood cancer. Cindy explains why:

SuperTy_SmileFall in New York is so incredibly perfect.  The trees are enchanting, the crisp breeze fills my lungs with purity and the sun continues to warm my face.  Days like this prove to me that Ty is all around.  Every falling leaf is a poetic reminder of our love and loss.

Ty was born on a beautiful fall day. He died on a beautiful fall afternoon, too. This weather has always been my absolute favorite, but of course now it leaves me ambushed with the sad, gut-wrenching memories of one year ago.  Thankfully, some of those memories of Ty’s last days are incredibly beautiful and they keep me putting one foot in front of the other.  Whenever I recall Ty’s unbreakable “smile of the day,” I continue to be awestruck and inspired.

When Ty was first diagnosed with cancer, he was 2 years, 10 months old.  We adopted phrases around “fighting” and nicknamed him “the little fighter.”  This name still rings true to Ty.  He continues to inspire others to fight on, just as he did.

Back then we dreamed of triumph against the evil monster that grew inside him for no good reason at all.  We thought we would win.  Today, my husband and I still dream of triumph.  A very unfair and different kind of triumph, but nonetheless, we still dream big.  We want to do something to help change this.  But we can’t do it alone.  And we aren’t.
Today is Ty’s sixth birthday. He won’t blow out the candles on his birthday cake. He won’t open the presents we carefully wrapped for him. But today, we are honoring Ty by keeping the promise we made to him and to all the families who unwillingly share in our suffering.

Ty_in_treatmentThere are many organizations dedicated to raising awareness for children with cancer, but few with the scope and strength of the St. Baldrick’s Foundation. Because we can trust St. Baldrick’s scientific review process, we know that we are funding the brightest, most innovative researchers in their fields. We can be sure that we are minimizing our overhead costs and maximizing the amount of every dollar that makes it into the hands of those researchers. We can work together to fund the grants that we believe are most true to the TLC Foundation’s mission of supporting research specifically geared toward the treatment of the deadliest childhood cancers, including brain and spinal cord tumors.

Childhood cancer is probably one of the saddest things that exist in this world, but I have so much hope for what is on the horizon.  It hurts so much that these potential breakthroughs in immunotherapies, genomics, and targeted delivery of chemotherapy and radiation weren’t available yet to save Ty.  Most aren’t available now, and may not be for years and years.  And it hurts to think that today alone, there are seven families in the United States who are kissing their children goodbye forever — if only they could have access to these treatments!
But I do believe that children like Ty, five and 10 years from now, will have a greater chance at survival because of all the tremendous support the TLC Foundation continues to get, and because of the work of foundations like St. Baldrick’s.  And those children will have a greater quality of life during treatment, because what these children endure today is simply unacceptable.

We have a stronger voice and will make a bigger impact if we openly share information and ideas, if we support one another’s initiatives, and if we combine resources and knowledge to help each other make the very best decisions when investing.

My hope is that someday — with all we are doing to spread awareness, help families, and fund research — there will no longer be a “childhood cancer community.”

I miss you today, Ty, on your birthday. I miss you every day. I wish we could have saved you. I promise not to rest until we save the next Ty Louis Campbell.

Sunday, October 6, 2013

I wish that Ty and me will fly on a flying pirate ship

Gavin wanted to make cupcakes tonight.  He's been asking for a while, so we finally did.  I realized he was not with us when we had our cupcake for Ty on his birthday, so Lou and I had Gavin sing to Ty and blow out a candle for him.  When it was time to make a wish, he said "I wish that Ty and me will fly on a flying pirate ship." 

That was a great wish.  Made Lou and I smile at our sweet Gavin.  Here is the video on YouTube.

Saturday, October 5, 2013

Celebrating Ty

Yesterday was an incredibly long day, and we tried to find ways to celebrate Ty in every way.

There is a park in Long Beach at the end of Magnolia Street.  It is right next to the boardwalk, and I took Ty and Gavin to play there almost every day when they were little.  Just before Ty passed away, we asked our friends in Long Beach to seek approval for us to place a statue of Ty in the park, and they did!  Just as we were beginning to plan this incredible tribute to Ty, Sandy rolled in and took the entire park with her.  It was devastating.

Thanks to the incredible Long Beach community, they rallied together to win a grant for a new playground at Magnolia.  It was amazing to watch how the families and neighbors came together to rebuild this very special place.  Lou and I were able to begin planning again.  The new park was completed earlier this summer, and it is adorable.  The last of the construction, the ramp up to the boardwalk, will be completed this week.

The statue was sculpted over the course of several months.  Lou and I would "visit" with Ty throughout the process, and share our thoughts with the artist over what should be altered and such.  There were many discussions around what, exactly, we wanted to do.  Did we want a statue of Ty as he was before he got sick?  After?  Lou and I decided that we wanted to see Ty as a big boy, standing on his own two feet, strong and healthy.  We wanted to see him at the beach, standing on the jetty rocks. What the artist achieved couldn't be more beautiful.  Ty looks as though he's taking in the beauty around him, deciding whether he wants to jump or fly.

The plaque reads:
Ty Louis Campbell

Ty was a magnetic little boy who loved the beach and played in this park. On behalf of the Ty Louis Campbell (TLC)  Foundation for pediatric cancer research, this statue is a tribute to all children stricken with cancer around the world. It was placed here as a reminder to celebrate the beauty of childhood and to see the wonder of the world through the eyes of a child.

After the unveiling of the statue we took a walk along the ocean and threw some shells out for Ty.  We traveled back up to Pawling with our friends who were in town for Ty's birthday.  We went out to eat, and before leaving Lou made sure to buy a cupcake for Ty.  When we came home we lit Ty's birthday candle, we brought his picture over to the table and we sang happy birthday to Ty.  We shared the cupcake between our tears, and we headed upstairs to sit in Ty's room.  We went through, his "bag of stuff," we looked through his pictures and artwork from school, we talked about him for a long, long time before we just couldn't keep our eyes open anymore. 

These days have been emotionally exhausting.  Sometimes I am so consumed with memories and thoughts of Ty that I can barely survive.  Then, at other times, I feel like a giant blob of nothingness.  Just numb, nothing there, I don't even know what to say to Ty when I lay down at the end of the day other than "I miss you so much, I miss you, I miss you, I love you, I miss you, I love you."

I am overwhelmed by the messages we have received, and the countless pictures of children and families honoring Ty on his birthday.  Thank you so very much for all the love.  It's been a busy, emotional week and I look forward to sharing more exciting foundation news on Monday.

Ty on his first and second birthdays.  Happy birthday, Baby.



Wednesday, October 2, 2013

Birthday Wishes

Today is my birthday. Friday is Ty’s birthday.  He should be turning six years old.  On behalf of the Foundation, I am so grateful to my great friend Meghan for making THIS happen at theory in NYC J.   Ty’s birthday will be celebrated at the coolest store location in Manhattan – the Ganzevoort location.  Starting Thursday, the store is offering 10 percent off all purchases, and an additional 10 percent of all proceeds going to the TLC Foundation.  Such a simple way to contribute.  We are so happy to be teaming up with such a high-style brand. 

Last week I also read books to the students at Wingdale and Dover Elementary Schools during their now-annual TLC Pajama Day Fundraiser.  I especially enjoyed reading “The Adventures of SuperTy and Gavin” because it gave me the opportunity to answer questions about Ty – the kids were all so curious and so caring.  We raised a lot of money for the cause, and we hope many other schools that hosted PJ Day fundraisers last year will do so again this year.  For information on how to bring this idea to your child’s school, preschool or daycare, please email  I promise the SuperTy book, along with some new SuperTy tees, will be available for online purchase very soon!
Exactly one year ago.  Our favorite smile of the day.
Needless to say, the only gift I wanted for today was to have my angel baby back, so the second best “gift” was to let this day come and go like any other day.  I wanted to ignore it and just get through it.  I didn’t want to hear a single “happy birthday” or have that stupid song sung to me by a birthday cake – but my family wouldn’t allow such deprivation.  They sang “Crappy birthday to you” with smiles and tears. And friends sent me hundreds of well wishes via Facebook, text messages, flowers and emails (thank you). After Gavin went to sleep, Lou told me that he had a surprise for me.  He asked me to wait in the other room while he got my present ready.  At first, I daydreamed the sweetest imaginary dream in the whole wide world.  In my crazy head I imagined walking into the room, and finding the greatest most impossible birthday surprise – my beautiful boy back, sitting in his designated spot on the couch with a smile that could warm a stone. 

As I waited, I realized what he was doing and I started to cry before I even walked into the room.  He was setting something up on the TV.  It had to be home movies of Ty.   Lou called me into the room, he had a glass of wine waiting for me, and he hit play.  It was so much more than random home movies of Ty.  Lou always does things to the umpteenth degree.  He had Donna (the great, unstoppable, most loving DONNA) work on a 15 minute long compilation that was set to the most beautiful music you can imagine.  I watched videos of Ty cooing in his crib, eating his first foods, dancing before he could even walk, and so much more.  I heard his beautiful voice.  His laughter.  Over and over again, I saw him run across the room and kiss me.  I don’t know how she found so many perfect videos of Ty – some that I didn’t ever remember seeing before. 

I cried through the entire thing.  Loud, ugly, hysterical sobs.  I could NOT BREATHE.  It literally took my breath away.  No words were exchanged through its entirety.  I just took it all in and relished in the beauty of my love lost.  Although I could barely get the words out, I told Lou afterward that it was the best gift I’ve ever gotten and that no gift can ever top it while I’m still here on Earth.  That the only better gift would be Ty himself. 

Lou and I have something very special planned for Friday to celebrate Ty’s birthday.  I will wait until then to share, but we have been working on this fitting tribute for a long time and I can’t wait to share the news with you this weekend.  In the meantime, I received messages from friends who have also made plans of their own to honor Ty on his birthday, and I couldn’t feel more blessed.  Some have planned balloon releases and sky lantern launches.  Another friend is donating her beautiful long hair.  Donna gave platelets just yesterday.  Here is an excerpt from an email I received just minutes ago:

I was trying to come up with a way to celebrate Ty this year and every year on his birthday.  I believe it is a day that everyone who knows and loves Ty should “pay it forward” in his honor.  Something big or something little.  Doesn’t matter!  I made an appointment to donate my long hair on Friday!  I’ve been thinking about how easy it would be for all of us to do one little thing to celebrate him.  A simple donation to his charity, pay for someone’s groceries or their coffee at the drive through and remember to say “this is from someone that loves Ty Campbell.  Get to know him at!” 

Please celebrate Ty on Friday.  The weather is supposed to be incredibly beautiful, as it should be, and I know you will be thinking of him as the red leaves are beginning to fall.  XOXO.  Thank you for your continued love and support. 

PS - This is how Ty slept, ALWAYS.  With his arms wrapped tightly around my neck, or Lou's neck, or whoever was lucky enough to put him to bed.  He was made of pure love.  No ladybugs lately, but I came home and found a ladybug sticker on the floor in my kitchen.  I cleaned this kitchen from top-to-bottom this morning and she wasn't here when I left the house.  I think it's cool that she was right there in plain sight upon my return.  Happy crappy birthday to me :)