Monday, January 28, 2013

Ty in the sky

Every single time I step outside at night, I look for Ty in the sky.  If there is a bright moon, or a twinkling star, especially when the North Star is shining bright (the brightest star in the sky and the one Ty "picked" to be his star), it's like I exchange a little secret love note with him.  A quick "I love you" straight from my heart to his.  Every single time.  Tonight I was driving home from my mom's house, which is almost a two hour drive north, and "Ty's star" was guiding me home the entire time.

I hope that never ever goes away.  I hope there never comes a day where I am too preoccupied with my life that I forget to look for Ty in the sky. 

Actually, I don't know why I am even worried that could possibly happen.  It's almost laughable.  For those of you with children... have you ever had a fleeting second where you weren't sure where your children were?  I used to get it when Ty and Gavin were small babies the most.  Like, if he was sleeping in the swing and I was doing the dishes lost in deep thoughts, I might jump and quick look at the swing to make sure he was still there, sound asleep.  I get that a lot now, because I really don't know where Ty is.  Only, there's no relief in jumping up to see him safe and sound.  I don't think that will ever go away.  And I'm okay with that.  I don't ever want to stop looking for him. 

I love this picture so much. It was during the Halloween fair in Long Beach. Ty had just finished his first round of high dose chemo. His hair didn't fall out yet.  I remember we were back in the hospital a couple of days later with a fever. I just love how he is looking at me. How he is reaching for me. I just want to grab hold of that hand. He loved me so very much. He made my life complete and gave me such purpose. I love him more than words can ever do justice.

I still haven’t taken down my Christmas tree.  Everything else is packed away, but I can’t bring myself to take down the now dead tree in my living room.  It was the hardest thing to put up, and now it’s the hardest thing to take down.  I know Ty picked it out for us.  The biggest, most perfect tree I’ve ever had in my life.  It is covered in ornaments that remind me of him.  New and old.  Candy ornaments, photo ornaments, super hero ornaments… It has become our routine to sit in what we call “The Christmas Tree Room” and admire our tree every night while Lou and I catch up before bed.   We call it that because it is our living room, with my grandmother’s furniture, that we otherwise never use.  At Christmastime it is transformed into our favorite room in the house.  Every night Lou and I sit and talk about what Gavin did that day, about missing Ty, the foundation and all that’s going on, our friends and family.
Last night Lou found me in the chair in front of the tree crying after he put Gavin to bed.  We didn’t talk at all, he just scooped me onto his lap and we snuggled and cried and felt better afterward.  Sometimes that’s just what you have to do. 

Thanks to a christmas gift from Aunt Debi, Gavin has discovered his love for Legos.  Thanks to the generosity of our great friends in Dallas, Lou and I will be able to take him to Legoland for his birthday in April.  I can't believe Gavin will be four in three months.  I made the mistake telling him about it, and now he wakes up every morning asking if it's his birf-day yet. 

On Saturday, we were supposed to go to a birthday party at a place called "Tumble Jungle" in Connecticut.  Gavin was so excited.  When we got in the car, I became lost in thought (as usual) and was driving on auto-pilot.  I ended up going 20 minutes south on highway 684 instead of getting off on 84, which means I was naturally on my way to the city (the hospital).  I pulled over and googled directions without realizing the address I pulled up was different than the one I pasted into my calendar.  I plugged it into GPS, drove another 45 minutes and ended up at the wrong place, at the wrong kids' birthday party.  Gavin was ready to go hog wild in the gym when I realized that I didn't' recognize a single person.  I asked the girl at the desk, realized I went to the wrong location, and had to pull Gavin out of the birthday party while he cried in confusion.  The whole thing set me off on a downward spiral.  Driving home I realized I was in Newtown Connecticut (when I was supposed to be in Norfolk) and I drove past sign after sign after sign in honor of the shooting victims.  I couldn't shake the sheer magnitude of the sadness that engulfs that town, and I couldn't stop thinking about all of the mothers. Our tragedies are very different, but we share the same pain and my already broken heart bleeds for them all.

We missed the real party, so I took Gavin to the carousel at the mall before going home to try and make up for it.  I ended up bumping into an old friend from college and we had a really nice lunch together.  She, her mom and I spoke about the loss of Ty, and the loss of her brother.  We talked about butterflies and ladybugs and all of the painful beauty that has come from our losses.  Gavin rode the carousel with her two beautiful daughters and he left the mall happy. 

Me, on the other hand... I was still a wreck when we got home.  I didn't think I was going to pull it together to go to the Wingbowl that same night.  I was way too emotional!  At one point, Gavin asked me, "Mommy, why are you crying?  Because you miss Ty?"  He knows why, poor baby.  It made me sad to know that he is so in-tune with how I'm doing and why.  Then I told him if he gave me a hug I would feel better.  He gave me the best hug imaginable, and I faked a big smile and wiped my tears for him.  Within minutes, I was crying again and he said "Mommy!  My hug didn't work!"  He gave me another one, and I finally pulled it together for him.  I wiped my tears for real and got ready to go to the event.  There was a fundraising table set-up for Ty and I wanted to be there.

Elaine, a friend of mine and Ty's for about two years, drove three hours to go to the Wingbowl just to show us her support Friday night.  It was totally unexpected and our long-overdue, in-person hug made my night.  I realize now, why I felt it was so important to re-apply my makeup and get to that crazy event :) It was all worth it to finally meet the woman who has been so kind to us for so long.  I always say that when people hear Ty's story, they either get it or they don't.  Despite having her own hectic life filled with work and small kids, Elaine has embraced the cause and she totally gets it.  You all do.  

I will share details about our meeting with some of our medical/investment advisers in a separate post, but I do want to close with the strongest message that I took away from those meetings.  Ty - our beloved boy - was a real miracle.  Our neurosurgeon, when he presented us with a surgical option after Ty's cancer metastasized, expected surgery would give us another summer with Ty (2011).  Never did he imagine Ty would do so well afterward.  Our other friend in the field who desperately researched treatment options for us at that time, was met with nothing but surprise that Ty was even alive.  No one had ideas or answers.  Instead, they fell silent when they learned about Ty's case.  Much to everyone's disbelief, Ty lived for a year and 3 months with no evidence of disease after that.  We made the most beautiful memories, never letting his condition stop us from taking him places and experiencing things.  Whenever I question whether we made the right choice for him, I remember that he went snowtubing, he went to preschool, he went to a carnival, he met Max and Ruby, Derek Jeter and the Jets!  That time with Ty was a miraculous gift and I will never forget that.  I believe God answered my prayers and gave us that time with him.  Always believe in miracles.

PS - I think Ty has a best friend in heaven.  This morning, the first thing I saw when I sat down with my coffee was two bluebirds in my backyard.  They stayed for almost 1/2 hour.  Then, driving to my mom's today I saw two hawks flying above.  I wonder who he is busy playing with :) 

Saturday, January 26, 2013

Any bereaved mother would agree

Do not judge the bereaved mother.

She comes in many forms.

She is breathing, but she is dying.

She may look young, but inside she has become ancient.

She smiles, but her heart sobs.

She walks,

she talks,

she cooks,

she cleans,

she works.
She IS, but she IS NOT, all at once.

She is here, but part of her is elsewhere for eternity.
I wrote so much over the past few days (I need to just write sometimes when I am so filled with mixed up emotions), but none of my scattered thoughts are ready for posting here tonight.  It is late, I am tired, I have been working all day long on various things for the foundation and I am simply spent. 
The above was sent to me via Ty's Facebook and I read it nodding my head in affirmation to every word.   I am elsewhere for eternity.  I will never be myself again.  I smile, but my heart sobs.  I am here and I'm not here at all times.  All of this pain only shows me how lucky I am to be capable of feeling such tremendous love, though, and I have Ty to thank for that.  Of course, I would rather be shallow and have him here.  I would rather stress over piles of laundry instead of whether or not I am doing enough to avenge what happened to him.  My life was completely and unexpectedly uprooted, and laundry doesn't matter anymore.  I am proud of the person he made me, but I hate the reason I became this person. 
This weekend I will post an update on our meetings and the exciting progress we've made on the foundation.  In the meantime, I want to thank all of you who signed and shared Maya's petition.  I was hitting "refresh" on the petition page all day today and I hoped it would reach 25,000 signatures before I went to bed, but it looks like I'll have to wait until tomorrow.  LESS THAN 1,000 SIGNATURES TO GO!!  That's incredible.  Thank you.  A gold white house in September is an overdue and necessary tribute to our little warriors.  I can't wait to hear the President's answer... a resounding "YES!"

Wednesday, January 23, 2013

Somebody should do something about that...

I said, "Somebody should do something about that."  Then I realized, I am somebody. -- Lily Tomlin.

That most perfect and appropriate quote was written on one of the entries in our wonderful gift from "Project Treasure".  Thanks again to all that participated.  I previously mentioned that Lou and I pull out one note almost every night and read it aloud.  That way, we can go to bed hearing someone else's love note to Ty and it always leaves us a little happier knowing how he has touched so many lives.  Another wonderful person shared her own personal loss of her son to cancer.  She reassured me that although our lives are forever changed, our hearts forever broken, still our memories are forever in our heart.  She is completely right.  I am just so scared that my memories will become fuzzy.  I want everything to remain vivid, so that when I call on a memory it can be as real as if Ty was in the room with me. 

Missing Ty is constant.  It is on my mind whenever an wherever you see me.  If I am at the restaurant, enjoying Gavin or whoever I am with, I am also thinking about where Ty would have been sitting (on my lap) and I look for his favorite things on the menu.  If I'm at the office all I'm doing is working on his foundation at full speed.  Writing about his life and trying to convince others to help the cause. If I am at the supermarket, I am thinking about how I would have bought more turkey if he was on one of his "turkey roll-up" kicks, or more fruit roll ups if that was his thing for the week.  If I am at a birthday party, I can imagine him as a big boy enjoying all of the activities with Gavin by his side.  Walking, running, whatever he wants to do.  If I am at a sporting event, I think what a champion he would have been, a superstar, if everything was the way it was supposed to be. 

Friday night, the local high school Trinity Pawling hosted two hockey games and they used the game as a vehicle to raise awareness and collect donations toward the foundation.  It was an honor for Lou and I to carry Gavin onto the ice so he could throw down the puck, but it didn't escape us for one second that it should have been Ty throwing the puck.  Ty should have been victorious and showing off how well he was doing.  We were so sure it would eventually work out that way, and it just didn't.  We are grateful for the large turnout at the game.  We are grateful for all of the kind people who approached us and kept us company.  We are grateful for Melissa and Kim, who froze their toes off selling SuperTy tee shirts.  We wouldn't be able to get this foundation off the ground if it wasn't for you guys.  I mean that.  PS - When our website is launched, we will finally have a section where you an order t-shirts online. 

Speaking of getting off the ground, our website is scheduled to launch on January 31st.  So far it looks amazing and I can't wait to share it with you all.  I poured my heart and soul into writing that site, so I hope it has the visual impact that we are so desperately striving for.  Here is a sneak peak of the logo for the foundation (not quite finalized, but almost perfect!!).   Don't you love it??

We're looking to launch the Muddy Puddles Project on the first day of Spring by rolling out that website and announcing our first big event (date and venue at least).  Please continue to send in your photos - and especially videos - of your kids splashing, getting messy and being kids.  We want to pull together a quick video reel, too that we can share with the media when we launch the website.  Email your contributions to  Please don't forget to include a line that gives us permission to use your photos or videos on the upcoming website and in additional marketing materials (i.e. event signage, brochures, or even the video). 

I want to again thank you all for sending in such eloquent nominations to Kelly and Michael.  If you have three minutes, please watch this video as well.  I found it to be such a beautiful testament to our journey and how hard we fought (and continue to fight) for Ty.  It brings me to tears every time, but that's okay.  There's no denying the sadness of all this, that's why I share it.  So we can change it for future children.  WATCH THE VIDEO HERE.  Thank you, Sara, for creating this.  I cherish it. 

Tomorrow, Lou and I have back to back meetings in the city with members of our medical advisory board.  We are very excited about the funding model that we are putting into place, and eager to discuss their thoughts on some of the most promising research taking place right now.  Our advisors keep us informed and help us to make sound funding investments.  For all of you who donated, please know how incredibly serious we are taking this.  Your money will be spent wisely in our efforts to fund the most innovative and promising research.  The hardest part about getting excited about all of the progress that is being made is knowing Ty didn't survive long enough to benefit.  That's why I always say I am fighting not just for Ty, but for the next Ty Louis Campbell.  So that things will be different for him. 

Before I sign off, won't you please take the time to sign Maya's petition to the White House?  It would be a really big deal if the White House went "gold" for September.  It's important.  You can sign it until February 6. Thank you.

Missing you, Ty, always.  XOXO. 

Sunday, January 20, 2013


I can't tell you how humbled I am by all of the amazing and heartfelt nominations.  Your support is what keeps me going, and tonight it has made me so happy during my saddest days.  Your words are so incredibly kind that I am embarrassed because I know that it is Ty alone who is wonderful, amazing and UNSTOPPABLE.  I am just a crazy lady who doesn't deserve such accolades, but I truly appreciate all of the wonderful things that you have written about me and my family.  Thank you just isn't sufficient.  I wish there was a way to say it better, but the best I can do is a large font, all caps, giant shout-out at the top of my lungs:


We all miss Mely.  Look how much they love each other.  Gavin has been doing really well though, thank God, and keeping Lou and I entertained.  He is such a good boy, and he has such a great energy.  Like any kid, he just LOVES to have fun, and he has been changing so much over the past few months.  He's growing up so fast, and saying the cutest things imaginable.  This awesome batman doll was a gift to Ty when we first moved to Pawling in Dec. 2010.  Gavin was a toddler and much smaller than Batman.  Look at him now!  Makes me happy and sad at the same time. 

We had so much fun today.  I took him to the office for a few hours and he was such a good boy (until he had a meltdown at the end over an inappropriate you-tube spiderman video).  I had a couple of young volunteers come in, and we got so much done!  We also had a huge conference table delivered by a loving family who have been huge supporters of the foundation.  We are ready to do big things at the TLC Foundation!!  I love walking into that office and seeing Ty everywhere.  It is my favorite place to be and every day goes by too quickly when I'm there.  There is never enough time to get through my email and do all the things I want to do!  Which is a really good problem to have. 

When we came home, I was watching Gavin eat his lunch and I couldn't stop staring at him.  Thinking about how much I love him.  I asked him "do you know who my favorite little boy is?" and he answered, "TY AND ME!"  I was so proud of him, that he included his brother like that without missing a beat. I hope it is always like that.  That Lou and I are able to keep Ty's memory alive in our family without ever making Gavin or any future children feel less important.  Future children, by the way, remains undecided between Lou and I.  For those of you have mentioned it to us, thank you so much for your faith in our ability as parents, and we do have so much love to give, but we are just hurting too much right now to be rational about that yet.  Time will tell. 

I have been fighting a cold, and tonight I have a nagging cough.  I am breathing shallow to avoid coughing as much as possible, and I can't stop thinking about my poor baby Ty and all he went through.  I can't get the sound of his garbled breathing out of my mind.  How for months he couldn't swallow his secretions well and his breathing was so compromised.  I think about how uncomfortable I am right now and can't help but imagine how much worse it must have been for him.  Not just when his breathing was difficult, but there are so many different phases of suffering he experienced over those 2+ years.... that reality and those memories are the only things that help me to be grateful that he is finally free.  It helps me to put my selfish needs aside - my need to hold him and hear his voice - and feel better knowing he is free.  He is soaring.  He is happy.  He simply has to be or life would lose all meaning to me.  Look at this beautiful face.  God's work. 

I can't wait until I am with him and I can understand all of this, but until then I promise you that I will enjoy Lou and Gavin and whatever my future holds.  But I am not afraid to die.  Not one bit.  I promise to love and appreciate the life that is ahead of me, but I also welcome the day that I can see my angel baby again. 

Thank you for my signs, Ty.  They make me so happy.  I worry about you constantly.  It feels so wrong not knowing where you are or what you are doing.  Then you send me something beautiful and I know everything is okay.  You are and always will be the best good boy in the whole wide world. 

Friday, January 18, 2013

Still choosing hope

I've stated many times before that the concept of false hope is an oxymoron.  I know that there are people who will read my words and think I'm fooling myself.   Just as I know there were people who expected Ty to die from the day they heard about his diagnosis.  But I don't believe in false hope.  Either you have hope or you don't.  And when you're in a desperate situation, why wouldn't you choose hope over despair?  So, through all of this, I've chosen hope and faith.  And I have no regrets.

The idea of accepting the inevitable will never make it easier, either.  I always knew Ty dying was a possibility, but I think if I started trying to accept it earlier, it would have affected our incredible relationship while he was still here with me.  He was alive and right there in front of me, how would I be able to be the mom he needs me to be if I was busy learning to accept the idea that he might die soon.  Instead, I cheered him on every step of the way.  I did my own research late into the night.  I tried new things to keep him stimulated.  I told him I loved him and I talked to him about getting better constantly.  It made him happy and proud.  Remember the video I posted of him kicking the back seat of my car!  Miraculous!  That Ty was amazing.  That happened just before the cancer returned again.  It seemed to always happen that way for poor Ty.  Every time he began to see progress... to take even one baby step forward... cancer knocked him back even farther.  What a putrid, disgusting disease to go after children like that. Look at him trying so hard to do art again.  He is amazing.  Makes me so angry that this disease caused him so much hurt.

Still, my hope was unwavering.  It IS unwavering to this day.  I read a blog post from a mom who lost here baby to AT/RT (like Ty) just the other day.  She was much younger, not even one year old.  But she wrote about how both she and her husband had a premonition on the morning she passed, and how they dared not speak of it lest it come true.  However, by 3 o'clock she knew, without a doubt, and busied herself to pretend she didn't know, an involuntary decision she hopes she doesn't live to regret (she won't). But she knew I was there.

Do you remember how I did the same thing?  I woke up and got a cup of coffee.  Looking out the window I said to my mother, "I think he's gonna die today."  I busied myself around the house so I could avoid having a breakdown in front of Ty.  I didn't want to scare him.  And, I still had hope!  I hoped that if he could make it to the prayer chain that was arranged for 7PM maybe he would experience a healing miracle.  Instead, a very different miracle occurred at 2PM, and it was beautiful and peaceful and my hope only transferred from one where I focused on healing, to one where I focused on freedom, heaven and happiness.  It went beyond the skin I am in.  Hope is a powerful and magical thing. 

Here is the magic truth according to me :)  There are times where I have felt Ty's presence stronger in his absence, and there were times when he was here with me, but he wasn't present.  He was off in thought, flying with his angels and figuring out how all of this works.  I have seen him absent from his body.  It was fleeting, but it used to happen.  I like to believe he knew something more than the rest of us.  Now that he's really gone, I can truly feel his embrace in every gentle breeze.  I feel the warmth of his cheek against mine when a shaft of light catches my face.  I see him waving in the twinkle of a star and I know his ladybugs are intentional to tell me that he's okay, just as a falling leaf whispers "I am here."   Never stop believing that. 

I have my bad days.  Always.  Today was pretty bad for both Lou and I.  I woke up grouchy and had a bitter drive into work.  I accomplished a lot keeping busy there, but when I went to pick up Gavin at Nana's house I nearly shattered into a million pieces.  I could hear his voice calling for "NaNa" like he used to.  I would see him asking Papa to play all of his silly musical toys up on the shelf.  The worst was when Gavin was looking for his "brag book'.  Like any great nana, she has a brag book out for each of her grandchildren filled with photos.  Gavin grabbed Ty's at first, but I corrected him and gave him his.  Hot lava - phew - I got that back on the table without opening a page.  Then Gavin thumbed through his pictures of how he's grown up over the past three years and I noticed all of the empty pages left behind - to be filled as he continues growing.  Nana told me how my niece Deanna's book is almost full, just enough pages left to make it to her sweet sixteen.  I wondered if she left empty pages in Ty's book or if she just filled it up, but I couldn't ask her through my tears.  Why make her all upset anyway, we were having such a nice night. 

Okay enough about that... I have some asks for you all.

I want to share Ty's story with the big leagues.  Can you help me?  Will you nominate me as an "unstoppable mom" in this Kelly and Michael contest??  PLEASE???? (link below)

The four finalists will appear on the show and I will get to talk about Ty while raising awareness for Childhood Cancer.  This would be a dream come true in helping me accomplish all that I want to do for Ty.  Any monetary reward would obviously go directly toward my unstoppable cause :)

Unfortunately, it asks for a lot of personal information.  I decided to use the business address and phone number, please use your own cell as an alternative.  If you must put my birthday, see if October 1975 will suffice.  Below is the rest of the information you need.  Then you'll have 2000 words to tell them about why I am an unstoppable mom!  Won't you plese do this for me and for Ty?  It's not it in for fame (argh - not at all) it's for bringing Ty's foundation to the next level. PLEASE SHARE ON FACEBOOK TOO!!

Thanks to all of you who have already sent in a nomination.  This is one of the most important asks I have of you  You will have to register yourself, then find the contest on the Kelly and Michael page, fill out another form to nominate me, and include up to 2,000 words about why.  Yesterday was three months since Ty's been gone.  It feels like 3 years.  In just three months, I am so proud of how much we have accomplished.  Unstoppable is an understatement thanks to all of you!!

Use this information on the form (office address and phone)
Cindy Campbell
91 Gleneida Avenue
Carmel, NY 10512
cell 845-204-5447
Birthday October 1975

Here's a couple of photos for uploading, too.  Hope they work :)

Thursday, January 17, 2013

Office improvements and missing Ty

I started writing this last night, but I had trouble uploading photos. In rereading it, it seems like my thoughts are scattered, but I'll go ahead and post it anyway. I woke up missing Ty so much today (and every day). I woke up and felt normal, went to the bathroom, and didn't realize he was gone until i returned to the bed. Those are the worst kinds of mornings. Anyway...

I will start out with the good stuff.  Our new office space had wood flooring installed over the weekend (in the main room and the hallway), and tomorrow the carpeting will be installed in the two offices.  Freight Liquidators on Route 6 in Mahopac has graciously donated all of the supplies, and Greg Fagon of Avanti Custom Remodeling has again donated his time for installation.  Greg also led the painting project and I can't thank him enough for his incredible work.  He is a perfectionist, his work is beautiful, and he did it all in a day!  If you are looking for a contractor for any home improvements whatsoever, don't hesitate to contact Greg at   Once everything is in place, I will post pictures of the entire office.  It is impressive!  Great things are happening here :)

I want to talk about Gavin, tonight.  And our sad little family of three.  It just feels so weird and so wrong all the time.  Everywhere we go.  Today he had his ski school (we signed him up at the tiny local mountain considering he did so well in Vermont).  We had a snow day  today so the place was busting at the seams with kids everywhere.  Brothers and sisters running around together, parents watching out for their brood.  I felt so mad that Ty wasn't there.  That I once had a five year old boy, too, but now he's gone.  He was beautiful.  Gavin loved his brother so much and now I have to wonder if he watches other little boys playing together and feel the same emptiness that Lou and I feel.  Of course his pain doesn't match ours, he is too young (thank God), but he does get sad.  I know he does.  Every single time he meets a new kid, he asks them to come over our house to play with him.  It is so incredibly cute but it hurts so much every time he does it. He needs the comfort that he only got from his big brother.  I worry that Gavin is lonely and outnumbered by me and Lou.  I always wanted a life where I was outnumbered by my kids!

I was wearing a heart-shaped locket with Ty's photo in it today.  Gavin was sitting face-to-face with me on my lap and we were just snuggling when he took my necklace and opened it.  He knows what's inside, he's seen it a hundred times, but my little actor opened his eyes wide in surprise and said "Ty!  I miss you!"  Then he did the cutest thing, ever.  He started whispering while he pulled the heart up to his chest... "Ty is in this heart, and now he is in my heart.  I put you in my heart, Ty."  I told Gavin that the words on my locket are very similar (I carry your heart with me - EE Cummings) and I asked Gavin if he would like to wear one, too.  He said yes with so much excitement, I almost started crying but I didn't.  I totally held it together.  I had already had a huge, ugly cry on my way into the office this morning so I was strong. 

I take Gavin to the office with me sometimes.  He raids Ty's candy cart and likes to touch every little thing.  I turned around for a minute yesterday and found him here, on top of the microwave, eating a lollipop.  I love when he comes with me.  I don't accomplish much, but I think it helps him to feel like he is a big part of all of this, and that is so important. 

I look at pictures of Gavin and wonder, where did my baby go?  It's so sad.  I was a cancer mom since he was 16 months old.  I lived in hell for over two years - still in it - and during that time my baby boy grew up.  Just another thing about my life that breaks my heart.  I promise you, I do enjoy him. to the fullest, now.  I never allow myself to go into a sad daze when we're together.  I play with him.  I still tickle him and kiss his belly all the time because he just can't get enough of it and  neither can I.  I love how he yells at me for mercy, begs me to stop, and as soon as I do he jumps up and yells, "tickle me AGAIN!"  Kids are the best.

I have a very embarrassing confession to make.  I often wait to eat a late dinner with Lou, so Gavin eats alone around 6PM.  When I want to do stuff around the kitchen, I prefer to sit him in his high chair in front of the TV so he can't walk away from his food (which he otherwise does constantly unless I'm monitoring him).  He is going to be four in April.  He weighs 46 pounds.  I know, it is utterly ridiculous.  Well, tonight was the last night.  I took the chair down to storage and snapped some bittersweet photos beforehand.  I decided it was time when even Gavin teased me about it tonight.  "Mommy, I'm not a little boy, I'm a big boy.  Why do you put me in this chair?"  The answer is, I was being lazy.  I can sit at the table with him for a half hour and watch him eat every night without getting too anxious, right?  Maybe if he didn't eat as slow as my 100 year old grandmother I wouldn't get so antsy but the dishes are calling!   I know, I know, I am going against every thing I write about.  Only with this one thing.  His slow eating habits really weigh me down because he makes us late for school every day, he doesn't finish his lunch in the time frame at school so he doesn't eat enough, and I can never get out the door.  Sometimes I carry a buttered roll in my purse to make up for the scrambled eggs he had to leave on his plate during the morning rush. 

I know, he's huge.
Last night, I snuggled Gavin and my pillow ended up soaked.  He doesn't snuggle the same as Ty and I realized it had been several days since I allowed myself to remember those details.  How I would put Ty's arms around my neck, then cup and scoop his behind so his whole body was up against mine.  Our noses would touch and I would share his breath.  He got sweaty sometimes so I would tissue off his cheeks.  He would fall asleep and sleep soundly right through my endless kisses on those perfect lips.  I could imagine how I would uncurl his fingers and hold his warm soft hand in mine.  I wish I never had to let go of that hand.  I would do anything for Ty.  Anything in the world.  When I pray at night, I can even hear his whisper just like he used to recite the Our Father, and say a special prayer for all the children with cancer.  He was so special, I can go on and on. 

When we were stuck in the hospital, inpatient, I used to fantasize about breaking Ty out of there.  Unhooking him from all machines, removing his tubies, running out the door and driving away into the sunny day ahead of us.  I wanted him to see the trees and smell the flowers instead of being stuck behind those cold white walls, curtains and beeping machines.  I promise you it's true when i say that now I fantasize about the opposite.  I drive familiar roads wishing I still had a reason to keep going straight for the hospital.  To see Mary, and Dr. Kevin and Dr. Jeff.  To talk about Ty and how we were going to save him.  Lou asked me last night if I think any of his doctors actually believed Ty was going to make it.  We both agreed that Dr. Kevin was the closest to believing.  He was always so amazed by Ty, and so supportive of our family.  He got really chocked up when he heard the news of his passing, and that, to me, shows what an incredible heart he has.  He cares so much and he is going to do amazing things for his kids, and I am so glad that he is on our medical advisory board at the foundation.

When Ty was a baby, everyone stopped to watch him.  He was just a gorgeous, funny little boy.  Lou and I were always so proud.  I loved how he would run ahead of me on the boardwalk in what he called the jogging lane - but he knew not to get in the bike lane.  I could watch his tiny feet and his athletic legs racing me in his flip flops while I strolled along with baby GaGa.  Such a beach bum.  I loved how he wanted to go down in the sand all the time on a brisk fall evening after work - which means late dinner and a definite bath, but I never denied him that because I love being on that beach just as much as he does.  People loved to watch him chase the waves at sundown.  Collect seashells and run across the waters edge to make the seagulls and the piping plovers go crazy.  Wet and sandy was part of his wardrobe at the end of almost every day.  I was sure Ty Campbell would be a great surfer and a handsome lifeguard.  Then I hoped he would grow up to be an executive or a senator.  Someone of influence.  Well, in his short five years he certainly has become a little man of influence and I couldn't be more proud. 

It's amazing to know that half of his life was spent as a cancer patient.  All that we went through.  He still managed to grow up from a toddler to a young boy.  He remained strong willed and knew what he liked.  He had a way with people when he wanted to, and other times he was just too cool for talking or hanging out.  Never too cool for hanging out with his mommy, though.  No way.  His favorite place to be.  Holding him close is the thing I miss the most.  Hands down.  Our love just radiated between us.  Who couldn't feel good with all of that love being exchanged.  Not to mention how perfectly his head fit resting on my chest.  His little bum on my hip.  We were a perfect fit in every way. 

This week I learned of two more children in the area that just died from cancer. I've been following their stories and begging for their full recoveries. It is so hard to stay positive when the reality is so brutal. One mom referred to her son's recent birthday as a celebration because he survived another year. How wrong it feels to sing happy birthday when you get chocked up on the goofy part at the end... "and many more!!"

I received a present in the mail today (love them) and it was a necklace that had a Moon charm inscribed "I love you to the moon and back."  It's funny because I never said that to Ty as he was growing up, only when he was a baby because  I read him the Guess How Much I Love You/Little Nutbrown Hair book every single night until he was old enough to stand and pick his own books.  When Ty was in his bed, asleep for several days before he passed away, I pulled together a pile of all of our favorites old and new, and I read "Guess How Much I love you" to him countless times.  I read it just the way I used to when he was in infant.  In my softest voice.  The night after he passed away and he was still in our bed, I continued to read him his books softly for hours and hours  They say the hearing is the last thing to go.  I wanted him to know that i was reading to him. Guess How Much I Love You.  The Little Boat.  We're Going on a Bear Hunt, The Little Mouse, the Red Ripe Strawberry and the Big Hungry Bear, I Love you Forever... all of those books have so much more meaning now.  It was as if I was trying to prepare him and inspire him for the life ahead of him in heaven.  I wanted him to be inspired when I read "full speed ahead to the end of the world!!"  I hope he heard me.  I hope those hours of storytime filled him with comfort.  I know it helped me.  I was so helpless, I couldn't do anything, so I read to him, and I kissed his cold cheeks, and I held his hand and I whispered I love you a billion times over.  Oh my God, I can't even type through my tears thinking about that.  I want more time.  More stories.  I miss him so so very much.

I was all over the place in this post.  Hope that doesn't mean I'll be having one of those days!  Up and down.  Laughing then crying.  Yep, probably going to be one of those days.  I'll skip the mascara :)

I posted a similar picture to this one the other day.  I love the sunlight in his hair.  Almost angelic.

Sunday, January 13, 2013

Golden Globes should go gold

How can we get the Golden Globes to "go gold" for pediatric cancer?  aall of their marketing and event materials are already gold, who can I talk to?  They should change the gold envelopes so they untie a gold ribbon at the ceremonious reveal.  They can make an announcement at the beginning of the programming just to explain that gold is the color of pediatric cancer awareness (it can take less than 10 seconds), they can show an impactful 60 second video and they can encourage celebrities to wear gold accessories, gold shoes, gold dresses, etc.  It's a win-win!

I vividly remember the first Academy Awards when all of the celebrities arrived wearing red ribbons on their lapels.  I will have to look it up, but I imagine that was the first ribbon used to draw awareness to an important health-related cause.  Pure Brilliance. Some time in the early 90's, there was barely a celebrity in sight who wasn't wearing a red ribbon at the award shows, and AIDS awareness finally made such a huge turn.  The ribbon started the tipping point.  Research was funded.  Life-saving treatments were discovered and huge awareness campaigns for prevention were launched.  Thank God.  Wonderful, amazing things have been accomplished on behalf of AIDS victims.  Now, let's see what can be done for pediatric cancer:
  • There are 15 children diagnosed with cancer for every one child diagnosed with pediatric AIDS. Yet, the U.S. invests approximately $595,000 for research per victim of pediatric AIDS and only $20,000 for each victim of childhood cancer.
I realize that cause ribbons are a dime a dozen now (how sad is it that so many worthy causes exist?) and so people don't really wear them... but everyone notices pink shoes in the NBA, pink towels in the NFL, etc... we need to have Little League AND Major League Baseball wearing gold shoelaces and yes, we need the Golden Globes to go gold for pediatric cancer.  We desperately need more athletes and celebrities to get behind the cause!  We need President Obama to pay more attention to to our kids! This is something I will spend a lot of time trying to accomplish in 2013, so I hope you don't feel burdened when I ask you to send a "tweet" or help grow the likes on Ty's facebook page.  The more saturated we can be in the market, the more attention we can get from those influencers who have the power to make a story go viral, the more success we will have raising awareness, increasing funding, funding research and finding better treatments for kids that WORK without crippling them. 

Ty went through hell.  This was just before his 20th surgery.  His last surgery.  He is scared, swollen, sad and hurting... but he is also smiling and his hair never looked better.  Ty Campbell was extraordinary.  His spirit is everywhere.  I can only believe that he is being greatly rewarded in heaven for being the brave little soul that he was here on earth. 

Everyone asks me how I'm doing.  I'm okay, but I'm infinitely sad.  I feel bad because I just don't have the same passion for life.  I have a lazy attitude because every single one of us will die soon enough.  What's it all for?  The only two things that keep me from falling into a black hole are Gavin and Ty.  I am devoted to letting Gavin have fun.  I give him so much love he can't breathe sometimes :)  He is my lifeline.  And for Ty, I do this.  I continue to share his story in the hopes that it will eventually be heard by millions who will help me make a difference just like each and every one of you already have.  I work on building an amazing foundation in his honor.   I look forward to sharing our progress with you every step of the way, and working with you all to make these dreams come true in honor of the best good boy in the whole wide world. 

I love you, Ty.  Today was a tough day for your Daddy.  Please wrap him in the embrace of your spirit tonight :)  So he can feel your warmth and taste your breath while he sleeps. 

Friday, January 11, 2013

More about presents (or should I say, presence)

We all know Ty loved presents.  Who doesn't?  Even in my saddest state, when I open the mailbox to find a package I immediately feel at least some excitement.  Like the other day, I opened a gift of awesome new nail polish.  When do I ever treat myself to something like that?  Or the Stella and Dot earrings that were sent as a random act of kindness.  Absolutely made my day!!  And, made me so happy to think that people really do dedicate themselves to fulfilling random acts of kindness like that.

Gavin and I were both touched by kindness yesterday, and what a bad day I was having.  I came home to tulips in my mailbox (thank you, Marilyn!!).  Later that night when I was taking out the garbage I found a completely anonymous and unmarked package.  Can you imagine Gavin's reaction when he saw this guy?  I can best describe it as a loud gasp of surprise mixed with pure joy.  We always told Ty he was just like Iron Man because of his built-in hardware :)  I'm so happy that Gavin loves Super heroes just as much - if not more.  I believe it is his way of honoring his brother. 

Last November, before the first frost, we had a particularly warm day and I went out with Ty and Gavin to plant some tulips.  They were so sweet about it, and so helpful in their own way. Ty was still getting stronger at the time.  He was sitting up well so he helped me dig while Gavin, who was such a baby then compared to now, enjoyed bringing me various garden tools and grunting words that I could barely understand. He has changed so much!  Looks like Mely tried her best to capture the moment, but we all look a little crazy in this one :)  Makes me smile.  Cheese!

When the flowers bloomed in the Spring, poor Ty was inpatient for several months post-radiation necrosis, he was paralyzed again, and I was afraid he would never get to see the reward of his labor.  Finally we got  to come home just as they were beginning to die off so I'm pretty sure he did see his flowers in bloom (but I don't remember for sure - sucks).  I hope he did.  Of course, I was too involved in caring for Ty to properly care for my garden after that, but I do hope they will come back in the Spring again this year.  It will mean a lot to see those tulips in bloom.

I have two really great pictures/stories to share with you all.  Tonight I opened a drawer in my kitchen that I don't use often and noticed the can of "Magic Beans" that Ty bought for Gavin over the summer.  We had gone on a road trip to a small zoo in Connecticut but we didn't know it was closed on Mondays.  The best kind of mistakes sometimes.  It turned out to be serendipitous because we enjoyed a short afternoon in Kent Connecticut on a beautiful day.  We got the boys ice cream and went shopping for a while after a nice lunch.  That was when Ty wanted to buy a present for Ga-Ga who had fallen asleep in the car.  I suggested the beans because of how much Ty loved the "Max and the Beanstalk" episode of Max and Ruby.  When he saw that his eyes lit up in agreement.  The beans need to be planted in the Spring, so I told Ty and Gavin we would have to wait until this year to plant them.  Of course, I never imagined Gavin and I would be planting them solo.

Anyway, I have spotted the tin in the drawer so many times and never took it out.  Tonight, I did.  I don't really know why.  Maybe I wanted to read up on the best time to plant them, and when I opened the lid it read: "And without hesitation, he began to climb the beanstalk.  He climbed and climbed and climbed until he couldn't see the ground below."

I just thought that was so appropriate. I imagined Ty climbing that beanstalk up into the clouds and it warmed my heart so much.  Keep climbing Ty, and don't look back.

Yesterday I dropped Gavin off at school and came home instead of going to the office because I had a lunch meeting for the foundation.  After being home alone like that for the first time in ages, I soon found myself lying on the hard floor in my den, drowning in a pool of tears.  I begged Ty, I said, "Please send me a ladybug today.  I need to see you.  I need to know you are okay.  That I'm not crazy.  Please send me a ladybug today."  After who knows how long, I remember that I switched gears and started yelling for my grandmother who passed away a few months before Ty at 94 years old.  I was upset and said something along these lines: "And where are you, Grandma?  Don't you see me?  Where are you?  You should be taking care of me, not Ty.  He's only five.  I don't want him to see me like this.  He should have the responsibility of worrying about me.  You need to help me." 

Maybe venting just feels good but I swear to you, I got up off the floor within one minute of yelling to my grandma, I brushed off my hands, and I started doing the dishes.  I instantly felt better.  I was done crying and almost normal again.  I like to think she picked me up right then and there and helped me, just as I asked her to do.

It was so warm outside, I decided to take a walk in the yard to find my ladybug (I should have known that they always find me instead...).  I retraced the paths around the yard I would take with Ty in my arms.  I recited his favorite book "we're going on a bear hunt" like I always used to do.  I went to his little playset and sat at the picnic table where we shared countless lunches and goldfish snacks together in Long Beach (before he got sick).  I looked for him everywhere but I didn't see a single falling leaf, I didn't feel any warm breeze, I didn't see his hawk in the sky and I certainly didn't find any ladybugs.  I tried so hard not to be disappointed.

The fact is, Ty did send me a ladybug yesterday.  I just didn't get it until today when I opened a present from our cousin in the mail.  She sent this most thoughtful gift to hang on my rearview mirror.  As soon as I opened it, I messaged Renee to ask her when she put it in the mail.  Her answer... yesterday.  Thank you, Ty.  For sending me a ladybug on a day that I most certainly needed it.  BELIEVE :)  Always Believe. 

Wednesday, January 9, 2013

My best gift

A few weeks before Christmas, I was sobbing when I told Lou that I was at a loss for a gift.  Every year I try to have the boys make him something special.  Those are the best gifts.  It was so hard for me to buy him something this year because I didn't have anything new from Ty, and I never will again.  For his birthday I found a card in my closet that Ty had me buy during one of our Supermarket jaunts.  He just thought it was funny because when you opened it it "croaked" the happy birthday song.  I didn't buy it for anyone in particular, I bought it because Ty liked it.  When I came across it in November, it was the most special thing I could give to Lou on his birthday (of course, explaining why I had the card). 

For Christmas, I ended up getting him a gift certificate for a tattoo because I know he wants to honor Ty with one.  He was surprised and he loved it.

Then, I opened one of my gifts.

This laminated picture arrived in the mail the day after I cried to Lou about not having any new artwork from Ty.  One of his most thoughtful, kind, soft-spoken teachers at Blythedale came across something Ty had colored (with my help) and she was amazing enough to mail it to us.  Lou never opens mail like that, but on that day he did and it couldn't have been more perfect.  This was my best Christmas gift imaginable. 

You all know that I used to stay up for hours and hours every night reading up on other cancer kids, trying to compare protocols and uncover life-saving treatments for Ty.  There are countless children who struggle through years of chemo and other harsh treatments.  They finally win and enjoy a year, two years, five years cancer free, only to have the cancer come back and ultimately kill them.  Pictures of little kids holding up signs like, "Battling sarcoma for the fifth time".  Kids have cancer for years and years and years.  For life.  I used to say that if Ty was going to suffer fighting this evil disease for years upon years, only to die in the end, then I don't want him to fight anymore.  Well, I take it back.  Even if it meant more treatments, more hospital stays, more infections and more surgeries... I would take it.  Any time with Ty, I want it more than you can imagine.  I realize how selfish this statement is.  It is a totally bad mom thing to say and if I really had the choice I don't know what I would do... but I'm just telling you this as a true expression of how much I miss every day with him.  Even the very worst of days.  I miss them because I was able to hold him, kiss him, feel his hair in between my fingertips, hear his voice, put vaseline on his lips.  He was real and he was here and I can't believe I am left here to live the rest of my life without him. 

I mentioned before what a gift it is to come across new old photos of Ty.  The collection from Mely was my second best Christmas gift this year because I have pictures like this that I have never seen before.  This face just makes me happy.  It really does.  Pictures don't make me sad, unless they are photos of Ty when he was hurting.  Pictures like this make me so happy.  I can look at them all day and just smile. 

Before I go... a quick call to action.  Since "causes" became a part of Facebook, we have all been completely bombarded with petitions.  All of them sounding great, but after a while you start to wonder if they even mean anything or accomplish anything.  That, I still don't know the answer to (meaning, what the heck happens with all these petitions??), but I do know that Maya Thompson is legit and she started a petition to turn the white house gold in September.  Simultaneously, I hope Ty's foundation can do the same with the Empire State Building :)  Please take the time to sign her white house petition because I know she is the real deal, and who wouldn't want to see the kids getting this kind of attention from the most influential place of all?  This is not a petition but one that is hosted on another website called "we the people".  It requires registration, but the cause is worth the extra step.  Thank you.


PS - Some of you may have noticed a negative comment following my last blog post (and thank you to those who stuck up for me).   I debated it and ultimately decided to delete the post in an effort to keep this a kind, loving vehicle to honor Ty. My posts are filled with my honest emotions so I don't want to filter your honest reactions, however, I do believe that anyone who questions my love and devotion to Lou and Gavin probably hasn't been reading about our family for very long. 

Remembering the ride home

You know that the car is the place where I breakdown the most often.  When Ty was first diagnosed, it was a place I could go alone and scream my face off while driving around.  "LEAVE HIM ALONE!" I would yell, "WHY?" I would scream, "NO! NO! NO! NOT TY?!?!?"

Over time, I got used to the fact that Ty had cancer.  As awful, painful, scary and unpredictable it all was, there was still a routine to it.  A very messed up, should never have to be this way routine that involved weekly and daily trips to the hospital, extended stays, emergency trips to urgent care, needle after needle after needle.  Procedure after procedure after procedure.  Setback after setback after setback.  But it was our life.  Our new normal.  Throughout all of this, the car transitioned from a place of solace for me to vent, to a place where Ty and I would spend some of our most treasured time together.  Just me and him and the open road.  I would often reach behind me and hold his warm little foot because he always had socks or slippers on - no shoes due to his inability to walk anyway.  He always joked that a bear was chasing us.  We played "I spy" all the time and sang songs together.  We were so in love and so connected we might as well have been sharing the same body.

It makes sense that the car has again become my lonely place to cry.  How can I drive these roads without looking for Ty in my rear view mirror?  Hearing the radio instead of his Max and Ruby DVDs.  I still don't understand how this happened.  We were supposed to beat this.  We were in this together, a team, and here I am left to live this life without the love of my life.

Last night I made a trip to the supermarket while Lou was putting Gavin to bed.  I hate it there because it was Ty's favorite place so I was already feeling lonely.  On my car ride home Natalie Merchant came over the radio.  "These are the days, to remember...."  I started crying, of course.  Thinking about how these SHOULD be the days.  How I used to be a young, smiling person who happily sang this song at the top of my lungs.   The best days of my life should be watching my small boys discovering new things, playing together and loving life.  Watching them grow up together.  Instead I am left watching Gavin, at what should be the most FUN AGE, and I can barely see through the cloud over my eyes, my smile is so often forced because my head is swimming with uncontrollable thoughts of what is missing instead of what is happening right in front of me.  I can't get past it.  When I watch Gavin go into hysterical laughter over something totally silly and ridiculous, the first thing I wonder is if Ty would have thought it was funny, too.  When I see Gavin trying to draw a circle and learn the letters in his name, I  recall how Ty struggled to draw after all of his setbacks, but never stopped trying.  They will forever be connected and I know that, but missing Ty like this - carrying the weight of this loss on my chest every second of every day -  makes it hard to feel better about anything.

"These days you might feel a shaft of light make its way across your face.
And when you do you'll know how it was meant to be.
See the signs and know their meaning.
It's true, you'll know how it was meant to be.
Hear the signs and know they're speaking to you, to you."

It was a fitting ending to the song, especially given the fact that I was having a breakdown while listening to it.  I was completely giving in to the depression when these words reminded me that Ty has shown me he is okay, and I have seen the amazing things he can and will continue to do.  A few minutes later I snapped out of it by reminding myself how I truly am blessed and lucky.  That I got to be his mom even for five short years is the greatest blessing I could dream of.

This morning, again I found myself alone in the car during a long familiar drive into Westchester for a meeting. I couldn't stop thinking of our very last day in the hospital during the entire drive.  I was reliving the day we left to bring him home, knowing he was going to die there (but hoping and praying that by some miracle, he wouldn't).

He couldn't sit up in his car seat because he was having so much trouble swallowing his secretions.  He needed to be laying down so he could let them drain out of his mouth if necessary, instead of down his throat.  Lou and I were never going to call for an ambulance ride - enough was enough.  Instead, I sat in the back seat and cradled him the entire way home.  I realize how dangerous this is should we have gotten in an accident - but when you're taking your child home to die, none of that really matters.  It breaks my heart to see how swollen he was from being so sick and receiving so many fluids at the hospital.  To remember our sweet nurse taking off his bandages and "freeing him" from his needles for the last time.  I can still feel him in my arms.  I must have gently kissed the skin on that cheek, those lips, every single second during that car ride home.  If I wasn't kissing him, I was running my fingers through his hair ever so softly.  Brushing it out of his eyes.  Whispering "I love you so much!" the entire way.

I couldn't allow him to hear me sobbing, and I didn't want to shake and choke if I allowed myself to cry either because he was resting so nicely.  But there was no way of stopping the water from silently pouring out of my eyes.  It looked like I spilled a glass of water down both sides of my shirt.  Looking at this picture I took of him, I still can't believe that it came to this.  That all of this really happened.  I really can't.

In going back to read what I wrote before posting, I am realizing how heavy this all sounds.  And it is.  Heavy is an understatement.  So, before I sign off for the night let me leave you with this fun photo of Gavin to lighten it up just a little.  We went to a birthday party on Sunday, and he fell asleep with a lollipop in his mouth on the way home.  Ty would have been proud :)  Also, I posted a recent fortune cookie finding on Ty's Facebook yesterday.  "The greatest lever for change is awareness."  That's why I continue to write.  That's why I will always ask you to share his story.  Thanks for that undeniable and most appropriate message, Ty :)  XOXO.

Saturday, January 5, 2013

We survived the holidays

Lou at the mountain this week :)
Sorry it’s been a while since I posted an update.  We stayed at our friends’ house in Vermont through the end of the week and had very little internet connectivity.  It was nice.  We enjoy our time up there because everything just seems so quiet and simple. and the snow is just beautiful, but I was missing Ty so much (of course, I miss him always no matter what).  Gavin had a great time with his friends, though, and so did we.

Light sabers and moustaches
The last time we were in that house, Ty was scooting across the floor on his behind.  He loved to play with the magnets on the fridge and there were a couple of them that played music.  I remember watching him with a smile, but also feeling so sad because he was so different from the other boys.  He couldn’t run around and play.  The magnets he played with were baby toys and he was four.  Stuff like that used to make me worry about whether or not the treatment was going to cause learning and developmental delays.  I feared he wouldn’t catch up to the others and lead a “normal” life some day.  I wish those were my worries now.   Like I said so many times, I had so much hope and faith knowing that he would beat the cancer.  That he would continue to amaze and astonish.  Now I struggle to transfer that hope and faith in knowing that he will continue to do so, but in a very different way.  I am grateful for all of the signs he sends me.  I don't know how I would survive without them to reassure me that he is okay.

Ty in the car leaving Okemo one year ago
Going to the mountain triggered much of the same emotions.  The last time we were there we built a snowman with Ty.  He went snow tubing.  He went on the “snow coaster” roller coaster with me.  He had such a great time.  This year it was Gavin’s turn.  We put him in ski school and there is nothing cuter than a three-year old on a pair of tiny skis.  There really isn’t.  He spent the first lesson slipping, sliding and falling, but by Friday he was able to do the “wedge” and almost come to a complete stop on his own.  I am so proud of him.  It was five degrees below zero on Thursday, and he stuck it out like a champ out there :)

Look at him go!!
Each night this week, Lou would take Gavin in the hot-tub outside.  They would look up at the stars, pick out the brightest one, and talk to Ty.  “I miss you Ty.  I wish you could come and play with me.   But I know you can’t,” is what Gavin would say.  Hearing Lou tell me that made me cry beyond control.  I am so proud of Gavin, he really is such a great kid, but this is all just so unfair.  He loved his time at the mountain with his friends.  He plays so nice with the other kids and has so much fun.  I can only imagine how happy Ty and Gavin would both have been to play together.  They loved each other so much.  Gavin seems so lonely sometimes and it breaks my already broken heart even more.

After Ty died, Lou asked that every time we clink our glasses we toast to Ty.  “To Ty!” we say.  I am so glad he made this rule, because I imagine that over time we will encounter plenty of new people who don’t know our story.  When I’m 70 and toasting with strangers, I will be happy to explain why I insist on toasting “to Ty” in addition to whatever else on that occasion.  I want to talk about him always.  This will be a way that I can always do so, considering I will surely be drinking wine until my last days.

The holidays were very painful, but we survived.  I wasn’t sure we would, but here we are, January 2013.  Every Christmas decoration in our home triggers a memory of Ty.  New Year’s Eve feels like a joke because even though 2012 was the worst year of our lives, Ty was here in 2012.  I don’t want to put that “behind us.”  2013 is our first year without him, and there’s absolutely nothing happy about that.  So no, there is no “happy new year” for the Campbell’s, but we will survive.  We will keep smiling.  We will keep looking up for ladybugs, falling leaves and rainbows.  I hope I continue to see him everywhere.    

Some recent signs from Ty... While I was snowboarding yesterday, I was thinking of Ty the whole way down this beautiful wooded trail (and every trail).  It was just me and him and the beautiful snowy trail and a  huge, beautiful falling leaf cut right across my path.  The only one I saw all week, because all of the trees on the mountain are evergreens or bare by now.  Also, when Lou and I were at the top of the mountain at Whistler, we were greeted by some pretty amazing rainbows in the sky.  It's hard to see in the photo when it's this small, but there are a couple of them here.  I know these things happen on a very normal and frequent basis, but I also know that Ty is with us, and I love feeling his presence in the beautiful things I see every day.  It shouldn't be this way.  It should be his beautiful smile that I'm seeing every day instead, but my desperate, aching heart will take any bit of my Ty that I can get.

A couple of weeks ago, we received the most incredible package.  It was a project treasure box, and it is filled with notes from so many of Ty's supporters.  Lou and I were overwhelmed by all of the love, and so surprised by the gift.  It was wonderful and it truly is a treasure.  We put it on the table and haven't had the strength to read your letters, but tonight we decided to start reading them aloud to one another.  Just a few each night.  So we can go to sleep feeling warm and happy about how far Ty's story has gone, and how many lives he touched in such beautiful ways.  Thank you all so very much. 

Please continue to share Ty’s story.  We hope to have a website up and running for the foundation this month, and I can’t wait to share it with you all.  Please keep sending us your stories about how Ty has inspired you, and pictures of your kids being kids in honor of Ty.  Send to

Tuesday, January 1, 2013

Happy? New Year?

Is it possible to smother a three year old with too many hugs and kisses? I’m afraid I kiss Gavin too much.  I love him sleeping in between Lou and I every night and waking up to his sweet voice and strong hugs every morning, a habit we all happily adjusted to.  Poor kid has to overcompensate for my loss, so I’m afraid that sometimes I completely smother him.  I can’t help it!  I can’t hold onto him tight enough, hug him long enough or kiss him often enough.
When he is sleeping and I am up late, I check on him throughout the night to make sure he’s still breathing.   It’s like I’m a new mom again, nervous about having a tiny, fragile infant at home.  I’m always worried, and I honestly think that there is a possibility I will find Gavin still in his bed – not breathing – at any given moment.  I guess I am adjusting to a new normal where terrible things can happen at any time because I have already witnessed my greatest nightmare become a reality.

New Year’s Eve means a whole year of unknowns.  On New Year’s 2011, I welcomed 2012 with a heart full of hope.   I was excited to say goodbye to 2011.  Ty was doing well.  He was in nursery school, we were starting to get a normal life back and I was 100% sure that he was going to improve steadily until he could jump in muddy puddles.   I never imagined Ty would suffer from paralysis again in 2012 and pass away in the same year.   He was almost able to walk again last December (look at this picture), he was getting so strong and healthy again.  I was certain he would only improve and beat cancer once and for all but instead, 2012 turned out to be the worst year of my life.

Almost walking all by himself! Dec 2011

Over the past few days, it feels ridiculous every time I utter the words “happy new year” or someone says them to me.  It is the most absurd phrase because I can’t imagine being “happy” without Ty.  There are times that I find myself smiling and laughing and having a fleeting feeling of happiness, and I do hope I can find those moments more frequently in the new year.  I know it will get better over time, but I will never heal from this – that is one thing I know for sure.  I will never stop thinking about Ty, and I will never stop missing him.    He is the love of my life and nothing can change that. 

For New Year’s Eve this year, Lou and I joined our great friends at their house in Vermont for a quiet evening surrounded by falling snow.  They have four young boys and Gavin is having so much fun playing with them.  I can’t watch them without imagining my Ty right there with them.  I see him, as a big boy, healthy and running around.  In my mind, he is so beautiful, strong, athletic and funny.  The boy he was supposed to be before he got sick for no reason.  There is an ornament on their tree that shows a picture of Ty at 3 months old, lying on the bed with their twin boys who are close to his age.  I had forgotten about that picture and loved seeing it hanging there.

It helps to get out of the house.  I love being away from home because our house is so empty and I am overwhelmed every time I walk past Ty’s room, or catch a glimpse of his “bag of stuff” or his medicine in the pantry.  I imagine hearing footsteps and night and expect Mely to join me, until I remember that she’s gone, too.   Ty loved her as much as I do.

Ty, Mely and his lollipop - just about one year ago

I think I will spend much of 2013 traveling with Gavin while he is still young enough to miss some preschool.  I want to be anywhere but home.   I have some trips on the agenda for the foundation, as well, there is just so much to do with regard to that.  At least I know that 2013 will be a great year in honor of Ty, as we continue working for the cause and trying to save the future Ty Campbell from suffering the same fate.  I do think we will make a lot of progress this year and I am grateful for that.

I am so afraid that Ty will visit me less and less as time goes by.  I already feel like I am seeing less signs.  Of course, just when I am really needing him, he pays me a visit – like last night.  I was telling our friends a story about his amazing ladybug visits.  I mentioned the time a few weeks ago when I was doing the dishes and talking to Ty and when I looked up there was one right above me on the ceiling.  Later last night I was doing dishes and lost in thoughts of Ty – I was washing while our friend was drying – and she said, “look, right above you!”  Wouldn’t you know there was a beautiful ladybug crawling around on the light directly above me.  I can’t make this stuff up.  Just when I was thinking that I haven’t “seen” him in a while, and fearing I’ll never see him again, he did something magical for me.  

Ty was such an incredibly loving kid, I know he loves me, Lou and Gavin and all of us so much.  I hope he doesn’t worry about me.  I don’t ever want that.  In fact, whenever I’m crying I try to pull it together for him, because I still don’t want him to see me grieving.  I want him to be happy and carefree as he soars through the sky with the biggest grin imaginable. 

God bless you all.  We can't thank you enough for your continued love and support.  Wishing you a healthy year filled with nothing but rainbows, falling leaves, shooting stars and ladybugs.  Ty is with every one of you.  He is everywhere :)