Wednesday, May 29, 2013

These stories just make my day!

My name is Abby and I have been following Ty's story for a while now. I just wanted to let you know how truly inspiring you and your family are. I was blind to the world of childhood cancer until the song "Ronan" came out and I began following Maya's blog, and then came across yours and was astonished to find a story so close to my home town on Long Island.

I have become so interested and inspired in this cause. I am a junior occupational therapy student at the University of Scranton, and now aspire to be a pediatric OT, my goal in life is to help kids live the best life possible for them. I have kept Ty and your family in my prayers constantly, and I know that you have received signs from Ty, so I just wanted to let you know I'm pretty sure I got one too!

Unfortunately, I never had the pleasure of meeting your superhero.  But I want you to know that I was babysitting yesterday (it was an overcast day), and the little girl I was watching wanted to have a pool party.  I complied. Once we were all done we dumped the water out and there was a huge mud puddle smack dab in the middle of the backyard. She went to jump in and I hesitated letting her, but then Ty and all the beautiful children that don't get the chance to be messy popped into my head and so I jumped right in there with her!

We jumped and giggled and ran around for a long time! Seeing the smile on her face as opposed to the frown if I prevented her from jumping in, was priceless.  We spent the rest of the day playing and making the most of the day. We started drawing with chalk and although she's not very verbal yet, she asked me to draw a ladybug for her out of nowhere. I was speechless and smiled towards the sky and thanked Ty for showing me to really enjoy the simple pleasures of life, even mud puddles.

I think what you are doing is incredible and you have my full support! I am behind you a million percent! WE need to find a cure for these kids so they can all jump in mud puddles as long as they want! Thank you for sharing your undying love, strength, and courage. I am honored to have been changed by your story! Thank you! Stay messy!!!!!

This is what keeps me going on a bad day.  And it keeps me smiling on a good day.  Thank you, beautiful Ty (and Ronan, and all of the beautiful angels), for inspiring so many people to remember how important such little things can be!

Monday, May 27, 2013

Thankful for our freedom

Instinctively, most people retreat from threats.  Fortunately, the best among us confront them. 

For all those who put their life on the line in defense of freedom.  And for all those who have paid the ultimate price. 

We honor your courage and are indebted to your sacrifice.  May we always remember the heavy cost of freedom by never forgetting those who paid for it. 

INTO THE BREACH
A Memorial Day Tribute

This video linked above features my friend, Brad, Christina's husband.  He is a soldier who fought for years in Afghanistan.  He fought for you and me, for Christina's brother Andrew, and for all the others who perished with him on 9/11.  In the video you can see that Brad is wearing his SuperTy bracelet on his wrist and it brought me to tears when I noticed it.  He hasn't taken it off since the day we first met in August 2010. He is a special person and I am so thankful for him and all of the amazing men who fight/have fought for our freedom. 

 
This memorial day weekend was a very simple one for Lou, Gavin and I.  We originally had busy plans to travel to Long Island and bounce around visiting with friends and family (Christina and Brad included), but when our plans changed earlier in the week Lou and I welcomed the opportunity to lay low and just "be" for a change. 

The weather was totally crazy here in NY.  It was freezing cold with terrible thunderstorms and fierce winds over the first couple of days.  Finally, the sun broke through the clouds today and allowed Gavin to get some time out in the backyard while I mourned the morning glories that I planted for Ty earlier in the week.  I don't think they will end up surviving such a pounding and that broke my heart.  I will just have to start over and plant more seedlings for him.  I know that they will make him happy.  Although we were stuck indoors most of the weekend, I am grateful for all of the amazing photos and videos I received of kids jumping in muddy puddles over the weekend. 

In fact, today Gavin ran and jumped in a puddle in the Home Depot parking lot and a grown man said, "I wish I could play in puddles, too!"  That is exactly my point, my friend.  Just do it!  For Ty and the seven other children who died of cancer today... go for it!

On Friday, I decided to stay home from the office and get some stuff done around the house while Gavin was in preschool.  I answered some emails, but then I found myself wandering around the house talking to Ty for hours on end.  Crying my eyes out in every room, because every time I tried to accomplish a little Spring Cleaning - like cleaning out the food pantry - I was punched in the nose by one thing after another that used to be his.  Like his favorite fruit snacks that are now expired.  The two boxes of Puffs that have never even been opened.  The baby food and fish oil that I used to put in his shakes.  I couldn't tackle the food, so I moved onto the hall closet only to be hit with the medicine bag that went with us everywhere.  His famous "bag of stuff" that I sat on the couch with for about an hour as I held his Captain America, played with his "poop cow" and his robots and talked to him about how much I miss him and love him and worry about him.  I found a half eaten blue Push Pop in the diaper bag and I almost couldn't breathe.  I debated going back to bed, but knew I would never be able to fall asleep anyway.  I walked around the yard and recounted/reenacted every single second from the last time I ever walked around the yard with him in my arms.  I cried until my face hurt and then I cried even more.

Friday was one of the worst days I've had in months.  I can't even begin to describe what the reality of being in this sad, empty house alone felt.  I guess because I never do it!  I didn't realize how awful it is!  I am so grateful that I have the foundation to focus on every day.  That every day I can go to the office while Gavin is at school, and that when I pick him up I have him with me to keep me smiling and keep me busy.  We talk about Ty, but it's good when Gavin and I talk about Ty because it reassures me that he will not forget his brother.  He does stuff like this that cracks me up every day and he truly makes me so very happy.   



So, Friday was bad.  Saturday, Sunday and Monday were great because Lou and I were there for one another.  In fact, the rainy weather inspired us to clean up the storage room and that was a huge job.  Ever since we moved here, we never really had a chance to fully "move-in".  In fact, walking in that room you would realize we never even fully unpacked!  So, it is such a treat now to see the progress we made over the weekend.  We worked hard and it feels so good!  The only difficult part of the clean up was the ripple effect it caused... we came across a lot of things that belonged to Ty or reminded us of Ty so I was tasked with storing them up in his room.  To do that, I had to organize his closet better.  To do that, I had to go through some of his clothes and box up some of the countless cards he received over the years (we filled five large storage bins with cards and drawings. THAT ALONE makes me so proud of the impact my baby had).  I had to turn my back to Gavin and sit on the edge of Ty's bed to cry a few times that day, but it was okay.  Those feelings are normal.  I feel a pang every time I walk past the door to his room so of course spending a couple of hours in there while Gavin played would be hard... but having him there and knowing Lou was right downstairs made me totally capable of doing it.  Ty's room is getting there.  It's an awesome, beautiful room that has the very essence of his being covering every inch.  It's the happiest sad place in the world. 

Keeping with the trend of "getting things done" this weekend, I have been meaning to share this picture with you for so long - and to thank my friend who is responsible for it.  Before we left for San Diego I received a package from an old college friend.  She hosted a birthday party for her own daughter and gave out the following as favors.  She was so detailed in the message that she sent home with all of the children.  The gold bag... filled with goldfish... tied with a gold ribbon... with Ty's story on the other side of the tag.... It was just such an amazing way to share Ty's story and to help raise awareness for childhood cancer.  Thank you, Shannon.  I hope you know how much I appreciate this on so many levels.  You are amazing. 


Goodnight everyone.  Back to work tomorrow!  I am probably the only one who is excited for that :)  Get me out of this house!  XOXO. 

Friday, May 24, 2013

We lose. Not them.


“I wanna be remembered as a kid that went down fighting.  That didn’t really lose.” – Zach Sobiech.

If there is one thing I am certain of, any child who dies of cancer is remembered as a fighter.  They don’t lose.  Cancer loses.  And we lose - the ones that are left behind.  The cancer dies with their bodies but these beautiful, innocent, most holy of all souls live on in our hearts for an eternity.  Their stories of strength, triumph and tragedy inspire others to live theirs to the fullest.  To hug their children tighter and to cherish more the gifts they are given. 


I just pray more people can see the love and beauty that surrounds these kids during their fight instead of turning a blind eye to the immeasurable sadness because it’s too hard to imagine.  Life is sad.  Life is so sad and so hard for so many people.  Bad sh*t happens, sometimes really bad sh*t, and none of us are immune. 

It is just so important that we raise awareness and more people start acting on behalf of the cause.  On so many levels!  Everything from the way research and medical institutions are funded (most important!), to the ability for cancer victims to easily gain access to clinical trials and treatment alternatives.  We don’t know what causes most childhood cancer, it’s totally different than adult cancers, but we need to consider environmental toxins and be more cognizant of the chemicals we use, the air we breathe and the food we eat!  I am not saying this because I think I could have changed Ty’s fate if I used orange peels to clean my countertops instead of bleach, but as a whole I get so upset when I think about how we have manipulated nature on so many levels.  Nature has fought back and it’s called cancer!  Disgusting, vile, putrid cancer.

I am on this soapbox only because I wasn’t a doer until my life came to a screeching halt.  As someone who was happily floating along in life with my two beautiful children and my daily stress consisted of deadlines at work instead of chemotherapy and radiation, I look back and wish I had done more before I landed here.  I remember thinking how rewarding it must be to work for a nonprofit, too bad they don’t pay enough and I have no time to volunteer. 

Since Ty got sick I have been flooded by kind, benevolent, giving, selfless people that impress me still every single day.  There are so many good people in this world and I am happy to call so many of you my friends.  This is one of the many good things that came out of Ty’s illness.  It goes without saying, obviously I would give back all the goodness I have discovered to have deadlines at work and two healthy children.  I guess my point is that you are all those people.  You care enough to continue reading this blog.  You shop at Sevenly, you wear TOMS and a wrist full of silicone bracelets, you never pass up an opportunity to make a donation at the register and if you can’t afford to make monetary donations, you take the time to raise awareness.  You take the time to care and to share Ty’s story among so many others.  You are compassionate, loving, empathetic and I PROMISE YOU, you are making a difference.  Thank you.      

Gavin has been such a good boy.  He continues to talk about Ty a lot.  Yesterday morning he had this adorable conversation with Lou:

“Daddy?  When Ty wasn’t in heaven, was he in the Purple Room?”
Gavin goes to the same pre-school that I used to take Ty to.  He is in the “purple” room.
“No, I think Ty was in the blue room, but I’m not sure?  We’ll have to ask.”

Yes, Ty was in the blue room, aptly so.  I just thought it was so cute how he described it as, when Ty wasn’t in heaven.  He is really figuring it out, coming to terms with what happened to his brother, and coping well.  Better than me and Lou, that’s for sure.  On Friday I received a very kind text message from his physical therapist who used to treat Ty.  She wanted to let me know that he was talking quite about about Ty, asking her if she remembered coming to the house, and what Ty’s favorite toys were.  Stuff like that.  I couldn’t even get it together enough to text her back.  Sometimes it’s just so incredibly hard to bear. 

Gavin is such a happy, fun little boy, but it rips my heart into tiny little pieces to see him playing by himself all the time.  Of course we play with Gavin every chance we get, but he went from having Ty and Mely in addition to Lou and I, and now he has to pull at our clothes when we are trying to get things done around the house and ask us to please play with him.  This morning he was up early and for the first time EVER he let us sleep and went off to play on his own.  I heard him tinkering around in Ty’s room and I was so happy to see the mess he made!  Finally, someone was playing with all of Ty’s awesome toys!  Ty’s room is filled with so many incredible super heroes, cars, robots, etc.  I used to hesitate whenever Gavin wanted to play with them because he was so young and I feared he would destroy them.  This morning I realized that now I embrace it.  I want him to enjoy a piece of his brother like that, and he has grown enough to understand.  He appreciates the toys and he is careful because he doesn’t want anything to happen to them, either.    

Yesterday he was riding in the backseat and reminded me that “I used to sit there, Ty used to sit here, and Mely used to sit there!”  He said this with a smile as my face contorted in the rearview mirror.  What a sweet, smart, loving little boy he is growing up to be.  Lou and I say “I love him so much,” about a million times a day.  He is our lifeline and we are so blessed. 

Wednesday, May 22, 2013

B-A PUDDLE JUMPER!!

Many thanks to our friends at Be Your Own You for developing a unique line of clothing in honor of Ty and all children battling cancer.  They are sold for a limited time only and today is the last day, so please be sure to get yours while you can!  For every item sold, $7 is donated to the Ty Louis Campbell Foundation for childhood cancer research.  Thank you!!

Jumping in muddy puddles is the one thing Ty asked to do when he was "all bedda."  For Ty and all the children who don't get to enjoy the childhood they so deserve - be sure to jump in puddles, throw glitter in the air, give piggy back rides to bed and choose finger paints instead of crayons.

http://beyourownyou.org

Monday, May 20, 2013

These are days that test faith

Lou and I returned home from Dallas after an incredible fundraiser late last night.  We had a wonderful weekend, we met some extraordinary people with bigger hearts than you can imagine, and we came home feeling inspired.  Then today happened, and it feels like the high from the pleasant balloon ride we enjoyed over the weekend didn't just pop - it burst into flames.  Everything is okay with the Campbell's but there has been a lot of bad news in general that leaves me in a funk tonight. 

Months ago, soon after Ty passed away, I posted this now famous video of Zach Sobiech singing his original song, Clouds.  I fell head over heels in love with him and his family, instantly.  In his video you could watch his mom beam with pride as she whispers along and I felt like we were the same person.  Living in parallel.  Such love, pride, fear and sadness over the loss/pending loss of our sons.  God, there is a spot on the video at 2:56 where his mom mouths the words "it won't be long now" and you can see, just for a millisecond, the most raw and gut-wrenching fear and acceptance in her eyes.  I wish we could embrace in hysterics and just cry together for our boys.  She has no idea who I am, but I am her and she is me. 

It's almost impossible to bear and watching his video always brings tears to my eyes, yet his song also gives me a little bounce in my step and has me singing "up.. up... up... " all day long while thinking and smiling over memories of Ty.  What he did was astounding, so very mature, and I am so glad that it is getting so much attention.  A number of celebrities including Anna Farris, Jason Mraz, Phillip Phillips and more even posted a tribute video to him in March.  You can read about it here on people.com and download the video.  Finally, some beautiful, much needed attention for childhood cancer victims. 

Zach died today.  He was only 18 years old and fought osteosarcoma since 2009.  They are calling it a "rare" cancer, but the majority of childhood cancers, when singled out, are rare.  Cancer among children, however, is not rare.  And there is no known reason or cause.  And it can happen to any child at any time and there needs to be better treatment options.  I want to scream!!  When I first met Zach (virtually) I knew his disease was terminal, but I always held onto hope and I always will for all of these kids.  So today is a day of defeat. 

Today I also received news of my friend's mom who died of breast cancer in the morning.  My dear friend's father died of brain cancer on Thursday.  My phone just buzzed with a news flash that the death toll in Oklahoma is at 37 and expected to rise.  Today is just not a happy day.  I poured a big old glass of wine and I'm sitting here and drawing a complete blank. I am at a loss for words when usually this is my outlet. 

So, instead, I will steal the words from another beautiful cancer mom - Mighty Mikey's mom.  She just said, "Living through Sandy, seeing what it has done to our homes and neighborhood and how Rockaway has fought back and showed our hearts and strength.... that's what I'm wishing for Oklahoma... There is always something to be grateful for!"  Praying so hard!

Only someone who has been to hell and back can see such sunshine through the clouds.  To Chrissie and all cancer moms who truly know what the depths of hell feels like, you are all so brave, so beautiful, so strong and so inspirational.  I am proud to be among you all. 

So on this unhappy day, I did something that made me feel really good.  With Gavin's help (sort-of) we grew morning glory seedlings - blue flowers in honor of Ty.  When I returned from the weekend away I noticed that they had sprouted and were each more than 3 inches tall!  I went outside on this sunny afternoon with Gavin and I lined our fence with Ty's flowers.  I also planted some sunflower seeds where Ty's tulips are dying off.  I need something sunny and bright in that same spot all summer long.  The anticipation for those tulips was grueling because I had such memories of planting them with my Ty... they were beautiful... and now I will anxiously await the arrival of his sunflower substitutes.  Because I know he would have loved them. 

The foundation is going strong.  I have so many ideas for September and so many upcoming announcements.  I can't wait for our giant Muddy Puddles Mess Fest on August 10th!  Our segment on The Doctor's is expected to run in June, and I will encourage everyone to participate in the project at that time (we are currently working through the final glitches on the website before our big roll-out). 

I am still decompressing from all the excitement over our incredible Dallas fundraiser Friday night.  I have photos to share and huge, huge thanks to our friends Kathleen and Rocky for making it all possible.  I flew home with a photo album from the event (what a treat!) but I don't have the photos as digital files yet - I need to scan them - so I hope to post them over the next day or so.  As I mentioned briefly, Lou and I feel so blessed for the opportunity to meet such kind and loving people, and to share Ty with them all.  We absolutely love Texas and promise to be back soon!

In case you haven't seen on Twitter or FB - this photo of Ty is just too cute not to share again.  Thanks to Emilio and his friends for his photoshop skills!!  We love Captain America and pray that our friend Chris Evans will continue to advocate for all kids like Ty :)  Cancer kids are the real super heroes.

Wednesday, May 15, 2013

Meet Batman Ty

Mother's Day was a very difficult day for me.  I spent a lot of time outside, alone with Ty.  It was terribly sad and I never welcomed a Monday more.  I'm glad it's behind me and I managed to get through it without doing anything crazy.  I love the bleeding hearts that Debi bought for me as a gift.  I planted them under Ty's tree and it is so very appropriate (all the red leaves came in and it looks so beautiful - thank you friend).

Meet Batman Ty
Maybe it is time to seek some kind of sibling therapy for Gavin.  He hasn’t had any crying fits lately, he hasn’t been sad or emotional whatsoever, but some of his behavior has Lou and I getting very sad and emotional for him.

It started two nights ago.  About an hour before bedtime, he started carrying around his giant Batman toy.  It is his only toy that is probably most like a real little person.  Now he calls him Batman Ty.  This was a gift to Ty when we first moved to Pawling and he has been a staple in the playroom ever since – you can see why.  It’s a very cool toy. 


“Batman Ty is my b-wuh-ver.  He can’t walk because he has pain in his head.  So I can help him and take care of him because I CAN walk and I DON’T have pain in my head.”
“Oh Gavin, you are such a wonderful brother.  You are taking such good care of Batman.”
“His name is Batman Ty.”

This went on and on into the night.  He took Batman Ty everywhere with him and he talked a lot about the pain in his head.  He helped Batman Ty wash his hands and brush his teeth before bedtime and he tucked him into the top bunk in his room.  I thought/hoped it was a one-time thing until he started doing it again the next day.  Batman Ty had snack at the kids table with Gavin.  Batman Ty sat at the table and watched his brother Gavin build with Legos.  Batman Ty sat on my lap along with Gavin while I read them both stories (one superhero book for Gavin, and one of Ty's old standbys for Batman).  Gavin was so cute the way he would sneak around the table to eat some of Batman’s snacks and then yell “look, Mommy, he’s eating his too!”  He isn’t sad, I promise he is happy, but this whole scenario just breaks our already broken hearts like you can’t imagine.  His teachers say he’s doing well at school.  I don’t want to discourage this behavior in case it helps him process all he has been through, but I don’t want it to become a habit, either. 

Because the idea of my youngest son carrying around a doll and pretending he is his dead brother is simply unbearable. 

Today, thank God, he didn’t play with Batman Ty much at all.  We only had one conversation about him, and it was when I had to move him out of a chair so I could sit and play instead. We talked about the real Ty for a while, and how he used to scoot around.  All of these talks have been prompted by Gavin.  He has been asking a lot of questions lately. We will see.  Hopefully it was just a short-lived game that he isn’t interested in playing anymore because it is just too painful to watch. 
 



FUNDRAISING HIGHLIGHTS:
HUGE THANKS to Jake and the entire staff at Jumpin' Jakes in Fishkill, and to the amazing members of our local 501st Legion for hosting such a successful fundraiser two weeks ago.  The kids had so much fun participating in Jedi Knight workshops and more.  A special thanks to our volunteers as well.  It was a sold-out event, and you can see why!  Very cool.  We look forward to doing this again and again!



Thank you to Michelle, Wendy and all those that participated in the "Ride for Ty" at Putnam Park on May 5th!  We hope to make it an annual event, and next year maybe you'll even get me on a horse :)  I hope to post photos soon. 

The B-You Signature Series benefiting the Ty Louis Campbell Foundation are still on-sale.  Please share on FB, Tweet, Instagram, etc.  CLICK HERE to see our feature in Macaroni Kid, and visit www.beyourownyou.org to check out the merchandise. 



RUN FOR TY - SEE KATIE COURIC
If you signed up to run the Miles for Hope 5K with me on July 27th in Flushing/Queens, you probably got an exciting email about the Katie Couric show!  The first 1,200 registrants will be granted two VIP audience tickets to attend the Katie show (various dates available).  I am so excited about this fun opportunity!  What a wonderful reward for running our butts off in honor of Ty and all the children battling brain cancer.  The Children’s Brain Tumor Project at Weill Cornell is such a worthy recipient of our fundraising efforts.  To register, please follow these instructions:
- CLICK HERE to access the registration site.
- Click on the "register here" button to the left.
- Select the option to "join a team"
- Find "team superty" in the dropdown menu, and it's pretty easy to navigate from there :)

For those of you who are local to Westchester, Putnam and Dutchess counties, stay tuned. The first annual TY-athlon is scheduled for the third weekend in September.  It will be held in Mahopac and will include a 5K for those who prefer not to bike/swim.  I will post the registration link in upcoming weeks.  We are very excited about this! 

Saturday, May 11, 2013

Another "first" without you. (Cr)appy Mothers Day!


I was just walking by Gavin's room and I overheard him saying something about angels so I stopped at the doorway to listen.  He was in bed in the dark with Lou, and I heard him telling Lou:
"I wish he could have weeeeal wings like an Angel and then he could fwwy (fly) down to our house.  Not Angel from X-Men.  Not the superhero Angel.  I wish he could be a weeeal angel."  Obviously, we know who he was talking about.  He didnt sound sad.  He was just saying this in a very matter-of-fact manner.  He simply wishes his brother could fly down and visit him. 

For no real reason, we have all had some very emotional days lately.  Thursday, especially.  I was so sad while driving to Gavin’s school to pick him up.  I was coming from a meeting in Valhalla and I was traveling on the Bronx River Pwy through the same stretch that I used to drive home with Ty every day last summer when he was attending school at Blythedale.  It was the first time I ever drove that pretty route without him in the backseat and I was flooded with memories of our drives together.  We played I-SPY every day and TY always joked that a bear was chasing us.  Then he would yell (as loud as he could) AND A DINO-ROAR!.
 
My Angel Baby in the Backseat.  Blue lollipop in hand.

I will never know if Ty called dinosaurs “dino-ROARS” because he was being funny/clever, of if he just had too much trouble making the “s” sound.  Knowing him, it was both.  Regardless, it was the cutest thing ever.  Gavin just recently started taking over for Ty, joking about bears and dino-roars chasing us (and he’s expanded it to include superhero zombies, too).  He intentionally says dino-Roar, too, because I reminded him about how Ty used to say that.

So when I picked him up, I put on my happy face and was talking to him about school that day.  Out of the blue, he asked me “Mommy, how did Ty get the boo-boo on his head?”  I can’t remember exactly how the conversation evolved, but he was asking so many questions so I decided to just explain that Ty had cancer and we don’t know why.  My mommy senses told me that our talk was scaring Gavin a little so I told him “that will NOT happen to you, Gavin.  Okay?”  “Okay” he said. 

Then he said, “I want Ty to stay.  Because I like to play with Ty.”  Forget it, I couldn’t hold it in any longer.  I started to cry.  I was as quiet as I could possibly be, I didn’t even think it was enough for Gavin to notice, but he did.  And then he just lost it completely!  Never before have I seen such real, genuine hysterics from him over Ty.  He cried and cried and cried – huge real tears – and said over and over “I miss Ty.  But I want him to STAY!  I’m crying because I miss Ty.”  He was shaking because he was crying so hard and there was nothing I could say to help him feel better because I was feeling the exact same way.   I had to pull over.  I pulled down a dirt road, I walked around the car, pulled him out of his car seat and just stood in the light rain holding him so tight.   I feel like we stood there for an eternity, hugging and crying.  I told him that Ty was crying too and showed him all the raindrops.  I told him that Ty misses him, too.  Then I looked up the road and I knew what we had to do…  No surprise here :) 

For you, Ty.  Sometimes muddy puddles can make it better.
Last night I had another sad, sad cry with Gavin.  In my zombie cleaning mode, I dumped out a Dixie cup that had some dandelions in it.  Gavin picked them for me days ago and put them in water, but they were dead by now.  About 15 minutes later I heard him call for me from the kitchen.  He was so upset and confused and yelled, “where are my flowers?  Why was my cup in the garbage can?”  He actually threw himself down on the floor when I told them the flowers died so I had to get rid of them, and he screamed “are they in heaven!!???!!!”  Oh my God.  I couldn’t fix it!  I didn’t know what to say!  I tried so hard to calm him down, but obviously his emotions were based on much, much more than the flowers.  My poor Gavin.  He is just trying to figure all of this out now, and he can’t.  I wish I could help him.  There are so many wonderful books, and we talk about it all the time, but he is just so young he is obviously having a hard time lately.  I think he is just plain sad over losing his brother, and that's that.   

He's been asking me about going to heaven again.  When will he get to go?  When I explained that he won't go until he is very, very old and God calls for him, he asked me how old Ty was.  I tried explaining that Ty was only five, but in his case things were different, but I couldn't even convince myself.  Whatever I came up with sounded ridiculous.  Sometimes it's just impossible to try to make sense of something so senseless and unfair.  Regardless of my unwavering faith. 

Poor Lou never gets any signs from Ty.  The other day I was sharing a story with him about a Cardinal.  How I was sad while cleaning our room, and I went to the window to look outside when I heard the birds.  Two beautiful red birds flew and landed in the tree right outside the window.  They were right in front of me chatting away.  One flew away after a few seconds.  The other just stood on the branch looking right at me for as long as I needed.  I swear.  I was sad and I just felt compelled to keep looking at that bird.  We were making complete eye contact and every once in a while he would cock his head to the side and utter a mild “chirp”.  It’s funny because I was kneeling and my knees started to hurt a little but I didn’t want to walk away from the bird in case it was some kind of sign from Ty.  I randomly said “okay, I feel better now,” and at that instant the bird flew away.  I swear.  The second those words left my lips.  (Linda - I know you appreciate this one :)

I told Lou how little things like that really help me cope and he said “I wish I got signs like that.  I never get anything.” 

Then, he did!
Lou always puts Gavin to bed just as he always used to put Ty to bed.  In general, he has always gotten home later than me so it was his time with the boys.  Ever since Ty got sick, he’s been saying prayers with him.  The Our Father, Hail Mary and Glory Be is pretty much the routine.  Ty knew them all and they had a very special ritual together.  Ty struggled with speech on and off throughout his horrific treatments, but there were certain parts of prayers that he always whispered.  During the Hail Mary, for example, Lou always paused in the middle after saying the two words "Holy Mary" and he let Ty say “Mother of God…”  then he continued. 

Gavin never does this.  He listens to the prayers but he never participates.  He has his own rituals with Lou where he says goodnight to Ty and to God every night, but he prefers not to do the other parts.  He never even heard the proper Hail Mary from Lou, because Lou has continued to pause and leave out the phrase “mother of God” because he leaves that part for Ty.  He says he likes to imagine Ty’s voice saying that part, so he never says it out loud himself.  Last night, out of the blue, Gavin said it loud and clear while Lou paused in his usual silence.  Isn’t that just so sweet?  It was like Ty was using Gavin as a vehicle to get to Lou.  It made him feel so much better :)

As Melissa E. said today (Sweet Angel Tanner's Mommy), "Happy Mother's Day to all the moms who have half their hearts in heaven."  Or, as I said to Maya, "Crappy Mother's Day to US!"  It certainly will be a hard day for me.  My first mother's day without Ty.  So incredibly weird to imagine.  All I can think about tonight is how exciting it was when I celebrated my very first Mothers Day because Ty was born, and now - just six years later - its my very first one without him. 

I had this short video on a loop for about 15 minutes straight tonight.  Over and over and over again I listened to that sweet voice.  I brought my laptop up to my face so I could feel like I was looking into his real eyes.  It is so sad that my baby was so hurt by all he endured, yet look at how sweet and loving he is despite it all.  This was taken less then two months after his severe paralysis set-in (as a result of radiation induced necrosis).  I can't believe he is gone. 

Since its hard to understand him, he is saying "happy mothers day, mommy.  I love you."  I love you too, my baby.  I miss you so much and I cant wait to see you tomorrow. 

video


Thursday, May 9, 2013

Puddle Jumper and SuperTy Apparel – B-YOU SIGNATURE SERIES


You all know that jumping in muddy puddles was the thing that Ty Campbell wanted to do most when he was “all bedda.”  He had just turned five when he lost his battle to pediatric brain cancer six short months ago after fighting more than two years.


Ty captured the hearts of thousands, and since he passed away, those followers have posted thousands of photographs chronicling times when they have stepped back to let their kids enjoy messy, carefree fun in Ty’s honor. I can’t tell you how happy it makes me knowing that kids are having more fun in honor of my son, and it gives me better perspective on losing him to this horrific disease.


I’m reflecting on all of this, because The TLC Foundation and The Muddy Puddles Project inspired an incredible crew at the Children’s Entertainment Network (CEN) to team up with us.  Nickelodeon Star Cymphonique has followed Ty’s story and through the CEN, she has helped launch a line of “Signature Series” apparel within their B-YOU(Be Your Own You) website.


 
 
The "Puddle Jumper" and "Super Hero" designs yield seven dollars for every item sold in support of our nonprofit organization, and they are only available for the next two weeks – starting today! www.beyourownyou.org.

I hope you will consider buying these amazing items for men, women and children, and sharing information about the B-YOU/Ty Louis Campbell charitable signature series with your social networks.  We are so thrilled and honored to have been chosen.  Ty’s legacy lives on!
 
The Sohn Conference
More great news for the Foundation and raising awareness in general.  Yesterday I presented to a room of more than 2,500 people.  Not just a room, actually.  I was on stage at Avery Fischer Hall in Lincoln Center.  Home of the NY Philharmonic.  I sat in the greenroom where the most prestigious musicians have been warming up for decades.  I thought about how the last time I was there, I had tickets for nosebleed balcony seats and watched James Brown perform (yes, it was a long time ago).  Yesterday I was on that same stage presenting to a packed house of Wall Street’s finest.

For 15 minutes, the words just spilled from my heart as I spoke about Ty.  It was surprisingly easy.  I think it’s what I’m meant to do for my baby boy.  To forever share his story as a platform to raise awareness.  To be a talking head for the cause.

The Sohn Conference is an annual event that raises funds for the Sohn Foundation – created well over a decade ago in honor of Ira Sohn who died in his twenties when his childhood cancer came back years later.  His friends worked on Wall Street and they wanted to do something.  The concept is brilliant.  Every year they host an investment conference where some of the greatest advisors in the financial world (Bill Ackers, and David Einhorn for example) donate their time to present investment advice in 15 minute sessions throughout the day.  All speakers donate their time on behalf of the cause so that the hefty registration fees paid by each attendee can be redirected to the Sohn Foundation for childhood cancer.  We are all working toward the same goal and I was so happy to be there to support this brilliant group of people.  They have raised so much money and done so many amazing things, I was the one walking out of there inspired.  I still don’t feel normal after such a whirlwind of a day.  It was exciting.  I met so many prestigious researchers in addition to parents just like me at Solving Kids Cancer.  It was an uplifting day. 

Afterward I walked through Central Park for about an hour.  I couldn’t hold back the tears.  I felt so emotional after pouring out my heart and soul on stage while holding it together, I needed to release in order to breathe again.  I’ve walked through the city streets with tears streaming down my face countless times.  Especially in the neighborhood of Sloan Kettering.  People don’t even look at me twice and I kinda like it that way.  It was good for me. 

After meeting my old roomie for a delicious dinner and a little too much wine, I boarded my train home.  When I opened my laptop I noticed for the first time that there is a kiss mark on my computer screen.  I don’t know how or when it got there, but I am certain it must have been me, kissing one of Ty’s beautiful photos.  Tonight I stared at the photo below, the one I closed today’s presentation with, and I ran my thumb over the image of your bottom lip over and over again as water just poured from my eyes.  How I long to feel those lips under my thumb.  For real.  How I wish his soft hair really was in between my fingertips, instead of the cold, hard reality of the computer screen. 


 

I got back so late today and was tied up in very good meetings all day this afternoon, so I need to retire for the night. Updates on Gavin to come! We have a Mother’s Day Tea party at his preschool and should be sooo sweet. 

Monday, May 6, 2013

NEW OLD PHOTOS = SPEECHLESS

There is nothing I can say.  These pictures say it all.  Healthy.  Beautiful.  Oh. So. Perfect.


 
 
At Ty's memorial, our friends Marc and Andrea handed Lou a thumb drive.  They said they had some pictures from when they came and stayed with us in Long Beach a few years ago.  We had it sitting on our "Project Treasure" box ever since, and we didn't get around to uploading the pictures until now.  You can only imagine the joy and heartache this brings.  I am so incredibly in love with this baby boy.  He is pure perfection.  How did this happen?  Where is he now?  My baby.  I love you, I miss you so so very much.  Don't miss me, I'll see you tomorrow.    Always be this happy.
 
 
 


Thursday, May 2, 2013

Recruiting for the cause!

The Ty Louis Campbell Foundation is growing at a rapid pace, and we are so proud.  We have an incredible staff of dedicated volunteers and a spectacular group of interns, but we still need help.  We are looking to hire additional staff who can commit a significant amount of time per week.  However, as a nonprofit organization we are choosing not to offer any salaries.  Lou and I want to maintain a 100% volunteer-based organization as long as possible, so that we can promise every penny of every dollar donated continues to go directly to childhood cancer research. 

We are looking to fill two positions.  This would be a truly rewarding passion project for someone who has the time but doesn’t require the income.  We are accepting resumes for the positions and applicants must be able to commit a minimum of 20 hours per week, 15 of which will be working out of the office in Carmel, NY.  Applicants must be proficient in MS Office (including Excel).   Daily tasks will include marketing and promotions, event planning, social media management and donor relations.  Please send your resumes to Lou at thetlcfoundation@gmail.com.

We realize this is a big request, but we are in a position where we can’t keep up with the exciting events on the horizon, so we wanted to share our needs with our supporters to see if we could recruit additional team members.   For Ty, and all the children, I look forward to our growing family at the TLC Foundation!

Daddy in one hand, the famous blue lollipop in the other :)

Run for Ty and all Kids with Brain Cancer
Last year I said, "Ty can't run, but maybe you can?" and what followed was incredible.  We pulled together an outstanding team for the upcoming Moving Towards A Cure 5K in NYC, and I hope we can do the same this year!   This 5K is hosted by Miles for Hope (an incredible brain tumor organization) and all of the funds raised for this event will be donated to Ty's neurosurgeons at the Weill Cornell Children's Brain Tumor Project.  They are doing amazing things there, and it is all for the children. 

The run is in Flushing Meadows Park this year (Queens) so I am hoping to see all of my Long Island friends there!  To register, please follow these instructions:
- CLICK HERE to access the registration site.
- Click on the "register here" button to the left.
- Select the option to "join a team"
- Find "team superty" in the dropdown menu, and it's pretty easy to navigate from there :)

For those of you who are local to Westchester, Putnam and Dutchess counties, stay tuned.  The first annual TY-athlon is scheduled for September in Mahopac, and will include a 5K for those who prefer not to bike/swim.  When my sister Theresa signed up to do her first ever triathlon in Pawling on June 1st, I hope she didn't think it might also be her last!  :) 




Wednesday, May 1, 2013

May 1 - brain tumor awareness

Another little boy lost his battle with brain cancer today.  His name is James and he was JUST LIKE TY.  I fell in love with him and followed him closely since the very first time I saw his picture.  I told his mom that I always end my prayers to Ty by saying "I love you.  I miss you so much.  Don't miss me, though, because you'll see me tomorrow."  I like to imagine a day in the life of a grieving mom is only a nanosecond in the realm of eternity where our children are, so for them, it really is as if we'll see them tomorrow.  My greatest fear from the day we learned of Ty's diagnosis was a vision of having to let go of his hand.  Won't he be so lost and worried without me?  Now I find comfort thinking that in the bigger picture it's as simple as: I'll see him tomorrow.  He is okay. James is okay.  It's just us poor moms left behind to keep dragging our feet through our days.  We help each other, though.  You help us, too.  Thank you.       

We'll search for more seashells tomorrow, baby
 
Today is May 1st.  The beginning of brain tumor awareness month.  Cancers of the brain and spine are the second most common types of cancer among children (after Leukemia) with some of the worst survival rates of all.  It is also the one that comes with the biggest price for survivors.  Radiation is necessary when battling most brain tumors, yet a child who receives radiation will likely have trouble reading, adding, subtracting and telling time - at a minimum.  Worse, they may have facial palsy, vision and hearing loss, speech impairments, permanent hair loss.  They are at risk for a stroke-like bleed to the brain that can happen at any time for the rest of their lives (it happened to Ty).  They are at risk of long-term radiation necrosis that can cause paralysis or even death (that happened to Ty, too).  Necrosis may not even start until ten, twenty, thirty years post-treatment.  It is one of the most difficult cancer-types to treat because few traditional chemotherapy's can break the brain/blood barrier (meaning, although it may be a systemic treatment it is still not powerful enough to penetrate the Central Nervous System). 

Our researchers are dedicated, but they have a long way to go.  Part of the challenge posed is lack of pediatric brain tumor tissue for testing.  And the research techniques are so limited compared to Leukemia (for example) because you can replace all the blood in the body, but most of the brain is vital and completely irreplaceable.  I am signing up to run the "Moving Towards A Cure 5K" again this year, to benefit Ty's beloved Neurosurgeon and his team of dedicated researchers at Weill Cornell.  I hope you will join Team Ty!  It will be held on July 27th in Flushing Meadows Park (Queens) Stay tuned for information on how to sign up tomorrow.  I hope you will run alongside me for all those that can't! 

With regard to the challenges facing the research world, I want to share McKenna's story with you all, as well.  I am united with her brave family and we are committed to win this fight together.  http://www.nbclosangeles.com/news/local/McKenna-Claire-Foundation-Brain-Tumor-Cancer-205692131.html

For anyone who hasn't seen this photo yet, can we just say in agreement... "WOW!"  I love Team Jack and his family with all my heart, and they love SuperTy.  We are all in this together and so many big things are on the horizon.  I just know it.  Whenever I feel defeated at the foundation, I drive home, crying, telling Ty I don't want to do this anymore... I just want him... and all I can see is him shaking his head and laughing at me as if to say, "of course you want to do this.  You have to do this.  For me."  And he's right. 


It's annoying that some of the posts on Facebook have used this as an opportunity to talk politics and poke fun of President Obama.  It's absurd.  I know you all can appreciate what a wonderful thing this is - thank you.  This is an awesome tribute to an awesome little man who will help raise awareness for all the kids like him.  And it worked!  Did you all see this amazing move in Congress as a result?

What Senator Deb Fischer talks about in the news segment below brings national awareness to pediatric brain cancer. By sharing Jack's story with the Senate, Sen. Fischer won the unanimous support for a resolution designating Sept. 26th, 2013, as National Pediatric Brain Cancer Awareness Day. Her words are beautiful and she is just radiating love for Jack and all our children. 

http://www.1011now.com/home/headlines/Sen-Fischer-Introduces-Resolution-to-Bring-Awareness-to-Pediatric-Brain-Cancer-204707131.html?device=ipad&site=full#.UYEPwOnZURg.facebook

I can't help but look at that picture and wish Ty, too, had such an opportunity.  That's just the mommy in me, wishing he ran the football across the finish line with his adopted football team, too.  That he shook hands with the President, too.  That he was still alive to use his fame as a vehicle to spread awareness instead of me having to share his story on his behalf.  All of my innermost mommy love is sincerely translated into pure pride and joy for Jack and his family.  What superstars they are. 

I know I am bombarding you with information tonight, but it is brain cancer awareness month and I felt it necessary to kick it off with a wealth of updates. 

As for me, I had a good day today.  Gavin was thinking about Ty a lot and that always makes me happy and sad at the same time.  When I dropped him off at school this morning I let him climb into the front seat while waiting online to drive up to the "drop-off" doors.  He loves it.  We call it "cruising."  Today he was sitting with his feet up on the dashboard and a grin from ear to ear.  Then he said, "Mommy.  Ty never got to go cruising."  No he didn't  There are a lot of fun things Ty never got to do.  Ouch.  At bedtime he was completely restless.  I was laying with him and I listened as he started whispering and mumbling.  When he kept doing it I turned to him and said "what are you doing? what are you thinking about?"  he said "I'm thinking about Ty.  I'm talking to Ty."  "Really?  About what?"  "MY BERFDAY!" he said so excitedly.  Then he asked me if Ty is five years old and how old he will be next birthday.  I told him that I like to think of Ty as forever five because it's such a fun age.  He answered by telling me this...

"Well, I want to get to be TEN because Wolverine is probably TEN.  Wolverine is ten and A MILLION DOLLARS probably."

How funny that the number ten is as big as a million bucks :)  Wolverine must be really really big.

G-Love with a BERFDAY present :)