Friday, June 28, 2013

Everybody has a story

I learned this the hard way, because I didn't have much of a story before Ty got sick.  But since my life changed so dramatically overnight and I decided to share it publicly, I have been introduced to thousands of stories.  Strangers share intimate details about their own struggles, and I consider myself very lucky to be so aware.  My eyes are open... my heart is open... most people are good and kind and life is really, really hard sometimes.  As a whole, we need to remember that pain can be so toxic it changes people and hardens them.  I have to remind myself of this every time I want to let my anger take over.  Or when I am easy to pass judgment without much knowledge, sympathy or understanding. 

Ty would want us to feel sorry for everyone.  To feel sorry for the person who seems harsh or mean, because maybe there was a life-altering event that made him or her that way.  And to feel sorry for the person  who has had it pretty easy, but who thinks otherwise and chooses to whine over a broken nail... because that person hasn't felt a love so deep or a loss so brutal - and if you think about it, that is actually sad.  Because God knows I would rather have had the opportunity to be Ty's mom and to love him beyond infinity, than to never know what that love feels like.   

This week was the very first time I was ever tasked with writing my child's name in his underwear and it felt so wrong to do it for just one.  I had a good cry this morning.  I dropped Gavin off at camp thinking about how Ty never got to go.  I pulled his counselor aside today and told her, "You may already be aware, but Gavin's brother died 8 months ago.  Sometimes he talks about him, and I want all of his counselors to know the situation and let me know if that ever happens." Whenever I have to tell someone that I have a son who died, I always present the information very casually and with a smile, because I don't want to make anyone uncomfortable.  "Sure, no problem," she answered. 

As I was being shuffled out the door because camp was starting and the kids were busily on their way, the last thing I said was "his name was Ty."  It felt so wrong because it sounded like it was long ago, as if his name was an unimportant afterthought.  I got to my car and sobbed and said to myself... "His name was Ty.  Ty Campbell.  And he was beautiful.  And he was important.  And he was Gavin's big brother and he was here and alive and the love of my life and I miss him like you can't even imagine.  And I know you can't imagine it, because even when I was aware of the fact that my child was going to die, I still couldn't imagine what this feels like."

When I got to the office I was already in a terrible mood, I was very emotional, and I had a million things I wanted to accomplish in the few hours I had ahead of me.  I was not very nice to someone at that moment and it's been bothering me since the drive home.  I just wish I stopped myself with the mental reminder... "everyone has a story, Cindy, maybe his is a doozy." 

He doesn't know that my five year old son died in my arms eight months ago - three days after this picture was taken.  That I bathed his lifeless body in the same bathroom that I use daily.  That I laid beside him in the same bed I sleep in every night, and felt his body slowly go cold over the next 12 hours.  That every night, when I lay in that bed now, I remember his last breaths and cry myself to sleep because I couldn't save him.  Everybody has a story.

When I was just six years old, I had surgery.  It was a fairly common and simple procedure, but it still required a 3-day hospital stay.  I don't remember much from when I was that young, but I remember SO MANY details from that hospital stay.  In fact, the only other vivid memory I can even recall from that time in my life was my very first day of first grade (the surgery was soon after).  I remember all of the scary x-rays and other tests at the hospital.  The rules about no eating.  I remember being bored in the bed, doing arts and crafts with my mom and longing for home.  I remember the actual surgery, when I was only partially sedated.  At one point when the nurse was wheeling me into the OR she left me in the hallway and was having a conversation with someone nearby.  I couldn't talk, I was out of it, but I clearly remember being confused and scared and feeling alone. I also remember being in the OR - I swear I do - and the surgeon was talking to me, putting me at ease, before the gas mask was placed and I blacked out for good.  I also remember the post-surgery bloodwork and the sheer terror I had of the multiple needles and the IV. 

In hindsight, what I experienced at 6 years old was certainly not a big deal.  But at the time, clearly it was a big deal to six-year-old me because I have such vivid, scary memories that stay with me to this day.  It was the fear and the pain that etched those memories into my mind.  And my 3-day hospital stay for one standard procedure is something I will never forget.  Do you know how upset that makes me when I think of Ty and all he's been through?  How my 3 short days can be compared with what he went through every day for over two years.  My one horrifying experience with bloodwork that scarred me forever was something he was forced to experience every single week to make sure his counts were okay.  My one surgery compared to his 20.  He endured three major, life-threatening brain surgeries, two of which removed parts of his skull and left him on a ventilator, semi-conscious, for days!  His pain at three years old was greater than most adults ever experience in their lifetime.  And all I could do was sit behind him and watch.  Hold his hand.  I always felt so helpless.  I was his mommy.  I was supposed to make everything better.  Instead I would whisper in his ear, "I'm so sorry, you are so brave, you will be okay baby boy."  But he wasn't. 

August 2012 - After Ty's 20th Surgery
There is a powerpoint slide that I created for whenever I present on childhood cancer.  It shows how, out of 5 children diagnosed with cancer - 1 Child dies during treatment (within the first five years) - 1 Child dies within 30 years due to long-term treatment effects (i.e. recurrent disease, secondary cancers, circulatory disease, respiratory disease) - 2 Children survive 30 years but suffer life-threatening, disabling and/or chronic health conditions, and - 1 Child lives over 30 years without any long-term chronic health conditions.  I think it is a very impactful depiction of what happens to children who undergo cancer treatment and why better treatment options need to be uncovered.  Only one out of five children with cancer will survive with few of no severe/chronic and life-threatening side effects as a result of treatment later in life.  And, as far as I'm concerned, one out of five certainly isn't good enough.  It's that simple. 

But children with cancer are also the strongest, bravest little souls this planet has ever seen.  I have a vivid memory of a young boy standing outside his door in the hospital hallway to "get some air" while stuck inpatient.  He was so thin, pale, obviously bald, and a limb was recently amputated.  He was about 8 years old, holding onto his IV pole for support, and his t-shirt read "THIS IS WHAT AWESOME LOOKS LIKE."  And that, my friends, is an understatement.  Sure as shit that kid was beyond awesome.  They all are. 

Saturday, June 22, 2013

Ty was here

I have written those words in the sand each day.  It makes me feel so good to remind everyone of his presence.  So much so that I wish I had the foresight to write those words all over the place when Ty was still with us.  Of course, vandalism is not cool… but it would be so nice to know that somewhere hidden in each hospital room it reads “Ty was here.”  Somewhere in every special place we ever visited, like the hotel room in Mexico, we etched it into the tiles or discretely scratched it under the headboard.  A reminder of a little boy who was gone too soon, but left an impact. 

There was a perfect quote posted to my Facebook yesterday that read: “There are souls in this world who have the gift of finding joy everywhere, and leaving it behind them when they go." - Frederick William Faber

Henley Hazel Romine is a beautiful little girl who is lovingly called “Henny Bee” by her family.  When I saw her for the first time on the ninth floor of Sloan Kettering I stopped in my tracks and stared at her tremendous eyes and her perfectly round shiny head adorned with a headband.  She was breathtaking.  She was just a baby, snuggled in her mother’s arms and sucking on a pacifier.   We were still rather early on in our treatment with Ty and I was so hurt by how very young she was.  That was almost three years ago and she has held a special place in our hearts ever since.  Her family lives in the Midwest, but we have been reading about her progress ever since she transferred care from Sloan Kettering after being told, “There’s nothing more we can do.” 

Her parents were amazing and refused to give up.  They sought alternative treatment options and found the incredible Dr. Schoeller in Michigan, who I have read about before.   She was accepted into a clinical trial for her Neuroblastoma with great results.  I often hoped that if Ty couldn’t get the miracle, maybe Henley will!!  I love that little girl and her family because we are so very much the same. 

Yesterday, her parents received the same news that we did on September 17, 2012.  Their post to CaringBridge was simple and straightforward: “It looks like God’s Plan is for Henley to watch over us.  Scans look bad and there’s nothing we can do but keep her out of pain.”

I can’t stop the tears from clouding my eyes every few minutes.  For months I read all of her updates with undying hope.  Her journey has been so similar to Ty’s, so many unfair ups and downs, and lately she has been doing so well and finally enjoying her childhood.  She went to nursery school and played on the playground with other children for the first time.   Her older brother had a happy little sister to play around the house with.  Her parents often wrote about how they finally felt like they were becoming a normal family again.  God, do I know exactly how that feels!  How, after experiencing the horror of childhood cancer for years, every little giggle tickles your heart and every ounce of normalcy feels like storm clouds are being cleared.  How one normal afternoon with nothing to do is as magical as stepping out into a sun shower with the warmth of the sun kissing your cheeks, the smell of wet grass and a hot street that got some much needed relief from the rain, and an awe-inspiring rainbow overhead. 

I also know exactly how her parents felt when that almost normal world was shattered the very second their baby girl said “my leg hurts.”  I read about the trip to the hospital to address the pain and I knew what they already knew but couldn’t imagine to say out loud.  In just a couple of days her pain became excruciating, and now her family is faced with the reality of progressive disease and no more treatment options.  I wish more than anything that they never had to share these feelings with me.  I had and will continue to have so much hope for Henley.  I will never stop praying for her, just as you all never stopped praying for Ty.

I always used to ask God, "How can I pray harder?  What can I say to You, or do, that will convince You that Ty needs a miracle?"  I find myself asking the same thing when I pray for Henley, and it makes me feel so helpless because I never prayed “harder” for anything in my entire life and I couldn’t change the outcome for Ty.  

The other day was eight months without Ty.  We sat down on the beach and within seconds a ladybug came soaring over and landed on Lou's leg.  "Lou, it's a ladybug!"  He was so happy.  Ty never sends Lou ladybugs, so it was extra special.

Later that day Lou and I took a walk over to the church to talk to him and tell him how much we miss him.  Inside was a woman kneeling down at the altar in prayer.  She had her head covered, rosary beads in each hand, and she was praying with some sort of methodic ritual.  I thought to myself – is that praying harder?  Should I quietly ask her to pray for Henley because she seems so much closer to God and clearly I wasn’t very good at it?  I wondered if I came to the church every day when Ty was sick and prayed with such intensity, then would he have been saved?  I quickly came to the conclusion that I believe God Himself would agree with.  Ty needed me to spend every second caring for him, and God wouldn’t have wanted me to leave Ty’s side to spend hours on end in church.  I was exactly where I was supposed to be, and my prayers were just as strong and just as meaningful from a hospital bedside versus a church pew. 

After reading the update on Henley, I decided yesterday that I was going to get drunk.  Please don’t worry, I don’t have a drinking problem… but I do have a grief problem, an anxiety problem, and a generally pissed off problem.  It served me well.  I laughed with friends, I indulged, and I forgot about the sad reality for a while.  I think I’ll do the same thing tonight. Tomorrow we head back to Pawling, and I will have plenty of time to cleanse and get back into shape. 

Our time in Long Beach has been so wonderful.  Gavin, had a blast. 

Monday, June 17, 2013

Father's Day Hurts Like Hell

Poor Lou.  As anyone can imagine, today was a very hard day for him.  He spent his first Father’s Day without Ty in bed for the majority of the day. 

Last night we celebrated Father’s Day by going out to dinner with my sister and brother-in-law while my mom and dad babysat all the boys (Gavin and my nephews).  Gavin was so happy all day to be with his cousin, and we all had a great day at the beach.   Dinner was delicious, and we had a lot of fun into the very late hours of the night.  Escaping like that was good for us, but I think it only made the reality of today hit Lou even harder.   Every time I went into the bedroom to check on him he was either sleeping, crying, or looking through the pictures and watching all of his videos of Ty.  I watched some with him, we cried together a bit, and we talked about how it is so hard to look back at all the pain and suffering Ty experienced.  We both agreed that we were blind to how bad Ty was at times, and only now when we look back at the videos and photos do we see what everyone else must have seen.  Only now do we realize how hurt and sick he was, and only now do we see what his doctors and nurses must have seen.  Were we the last to know that he was going to die?  If so, I’m glad.  Because maintaining hope and just loving on Ty and dreaming about his future in spite of it all only allowed us to give Ty the security that he needed on the toughest days.  I looked at the pictures and I told Lou how he was and is the best dad in the whole world.  He gave Ty every little piece of him and he just loves his boys so very much.  I wish I could trade places and give Ty back to Lou.  All day I just felt so helpless.

Lou and Gavin, wishing Ty was holding the other hand

Then Lou came out of the room around 5PM and said, “Can you do me a favor and get some frames and some pictures of Ty so we can put them all over the house for the rest of the time we are here?”  Yes, of course!  I was so happy to have something to do for him!  Something that would make him feel better.   I hopped on my bike, I pedaled to CVS, and I came back with some beautiful photos of Ty.  We put them in every room and they have changed Lou's mood entirely.  It helps both of us feel better.  Now I see his face when I walk in the door, while I’m wiping crumbs off the counters in the kitchen, and his beautiful face is next to our bed where it belongs.  We both feel so much better and we are enjoying a quiet night watching a movie.  Lou had some nice time with Gavin at the end of the day, and we enjoyed sushi delivery in our PJs.  Now we can put this day behind us. 

Ever since living in Long Beach, we always kept a beach bag packed with sunblock, a Frisbee, our giant blanket, stuff like that.  Yesterday we took it down to the beach for the first time since last summer, and Lou found a couple of Ty’s diapers in the pockets.  It’s just so hard!  Yet, I dread the day that these surprise reminders of Ty become less and less.  I don’t ever want to lose these little pieces of him because it’s all we have left. 

Lou and I were feeling okay, it was a beautiful day and the kids were having such a great time, but we did have our sad moments.  At one point we were standing talking with one another for a while, I looked down and I said “LOU!  DO YOU SEE THAT?”  Right in between us, in perfect condition, was one of Ty’s flowers.  When we held his memorial we had everyone place flowers on his name written in the sand.  Two months and countless trips in and out of the waves, this flower found us about 200 feet down the shore from the spot where it was originally placed.  Not only did it find us, but it was right in between us, in perfect shape.  We took it home and we can’t stop talking about how amazing it is.  My friend told me yesterday that I am blessed with signs, and she is so right about that.  If I didn’t have these signs from Ty I would be lost in my grief.  I would be completely swallowed up by the darkness.  How can I allow that when my beautiful boy sends me such beautiful things all the time?  I believe, so very much, that he is with me always. 

Again this morning, when my sister and I took the boys down to the shore in search of sea glass while we let the Daddy’s rest, Gavin was climbing the rocks on a jetty and a ladybug crawled onto his hand, then landed on my sweater and stayed with us for a long time until I placed her back on the rock.  My sister said “I think Ty is worried about you.  He is always checking up on you.”  I said, “that or he knows that I’m really worried about him and he wants me to know that he’s okay.”

My nephew witnessed the whole thing and he said to Gavin, “See, Gavin? Ty is always with you.”  In response to that, Gavin said “Ty is with all of us.  He is in our hearts.”  He is quite possibly the sweetest little boy on the planet. 

We are here for two weeks.  Still working on the Foundation remotely, but trying to get as much time in with our family and friends as possible.  Gavin has been having a great time, but every once in a while he misses his toys.  I didn’t bring any dress-up stuff, only some legos, because I didn’t want it to get out of hand.  My genius child was so mad at me, until he found a way to fix the problem on his own by wearing his superhero pajamas and using his undies as a mask.  He really knows how to keep the laughter in our lives, even when it's the last thing we feel like doing. 

For Lou, on Father’s Day, I am reposting a video of him and Ty that I made two years ago while sitting in a hospital room with our angel baby. 


I would be remiss if I didn’t include photos of our Dad’s, too.  Ty’s Papa and Pop-Pop.  The two greatest most loving Dads we could ever ask for.  Lou and I are always so grateful for having the most loving, kind and giving parents in the world.  We look up to our Dads every day and we always will.  We are all so lucky to have you, and Ty loved you both so very much.  Big, huge, giant much. 


Friday, June 14, 2013

The Muddy Puddles MESS FEST

Tickets for the Muddy Puddles Mess Fest, August 10 at Camp Kiwi, are now on sale!  You can purchase them at a discount online using the link below, or pay at the door on the day of the event.

I can't even tell you how excited I am that this event is finally coming to fruition.  It is going to be wild, outrageous and SO MUCH FUN!  Of course, it will be a giant mess fest indeed.  Whipped cream pie tosses, Mud puddle obstacle courses, food fights, splatter paint, giant bubble stations, dirt digs, and a giant fire truck to hose off the kids.  There are also pools, climbing walls, ziplines, batting cages, hay rides, bounce houses and so much more.  Fingers crossed for beautiful weather, but if it rains, who cares - that only means more mud puddles, right?

Thanks to our segment on The Doctors, The Muddy Puddles Project is really taking off!  I decided to post five recent photo submissions in honor of High Five for Friday (a social media campaign where bloggers post five photos that reflect on different things that happened over the course of the week, and describe why they are positive memories).  Even though all of these memories aren't mine, they are certainly positive and uplifting.  Enjoy! 

Twitter friends.  Please be sure to tweet your comments and/or messy photos with the hashtag #muddypuddlesproject :)  We just want more and more people to let their kids have more fun in honor of those that can't!!

Have a wonderful weekend.  Thinking of Ty every minute of every day, but knowing more children are having more fun because of him makes it just a little easier for us to cope.  Love you so much angel baby.  Hoping you are enjoying muddy puddles wherever you are. 

Tuesday, June 11, 2013

Where's Ty?

Kids are so curious.  They all love Ty so much, and so many children have become really passionate about the cause.  But I am also learning more and more that many kids are confused about what happened to him.  They don't understand how or why he got sick (neither do any of us).  They question where he is now.  They really have such an innocent and true love for Ty that I have come to realize is a testament to the wonderful adults they will become.  Check out these soccer uniforms.  Go Pawling Hurricanes :)

I have such guilt because I've been too busy to post in over a week.  It feels like I'm betraying Ty a little when I can't find time to write about him.  I hope he knows that I am thinking of him just the same.  Of course he does, but writing remains an important part of the grieving process and I need to find more time lately. 

I've been so quiet this week because the foundation has had a large number of fundraisers to juggle, and because we returned to Long Beach on Friday to spend a couple of weeks in our favorite place.  I can't even begin to describe how it feels to be here without Ty.  Not just here in Long Beach, because we were here a couple of months ago for his celebration... but here.  In the same house that we rented last year... that we decided to rent again last June when Ty was still with us because we expected Ty would be with us again this year.  Here where we sprinkled his ashes across the sand on the beach and in these same waves that I'm watching roll in and out each day.  Here, where I can see our church out the front window, where the beachfront is the same one that bore his name written in the sand and flowers piled high in his honor. 

On our first visit down to the beach this weekend we set out a blanket, rested our heads, and Lou said: "Ty is right underneath us.  This is the exact same spot"  Our eyes filled with tears, of course, but we both agreed that it felt good knowing that he was mixed in with the sand and sea that was right under our feet.  Good and horribly, terribly, gut-wretchingly sad all at the same time.  I am at peace here, regardless, but I see my handsome boy everywhere I look.  And I love seeing Gavin enjoy the beach.  He missed out on so much normalcy when he was little, in fact, this was his first time ever flying a kite :)  Thanks to his Uncle Billy who got it up in the air - something I was never good at.

"Hi!  How are you?  Where's Ty?" said a little boy we know well.  He and his parents bumped into Lou yesterday on his way back home from the beach. 

We first met this little cutie back when Ty was 6 or 8 months old, and he was just a little bit older.  "Aw, how cute, they will go to school together!" we said.  "They will be friends," we thought.  Yesterday he saw Lou outside and naturally asked about Ty.  Why wouldn't he?  And you know what the truth is... I promise you... it makes me happy because I am relieved to know that the kids are still thinking about Ty and asking about him.  Lucky for Lou, he eventually followed up with the question, "is he in heaven?"  Lou answered yes with sigh and a smile, and he survived the awful pang to his heart.  Like I said, we are both glad when kids ask about Ty, no matter how hard it may be. 

Does it make me sad to recognize another little boy riding his two-wheeler on the sidewalk and realize that he was christened on the same day as Ty when we all sat proudly with our babies in our arms, all dressed in white, filled with the greatest hopes and aspirations for them.  That he is the same boy that we watched surfing with his Dad the morning after we set Ty free in those same waters?  The healthy, athletic, beautiful 5-year old boy who is everything that Ty was supposed to be?  Yes.  It hurts.  It cuts me to the very depths of my soul.  But I can't change it and I am so grateful for how vivid my memories remain. And how they come rushing back when I'm here.  The good and the bad.  I want to remember it all like it is still happening right now.  Like he is still here with me.  In a lot of ways he still is. 

Lou went home for work while Gavin and I stayed on Long Island, so we didn't have a car today.  It was kind of nice having absolutely nowhere to go and nothing to do!  It was an absolutely beautiful afternoon but Gavin refused to go down to the beach so we instead agreed to get some exercise and take a nice, long walk into town.  He was a really good boy.  He didn't whine or pull on my legs insisting that I carry him.  I was consumed with remembering Ty, looking at all of the houses and assessing the damage from Sandy while he happily collected rocks and sticks and put them in my bag.  I walked by our old house twice.  I'm a little obsessed with doing that.  Then, wouldn't you know it started to rain on our way home.  The gray cloud came out of nowhere and I pointed it out to Gavin so he would walk a bit faster, but I never imagined the actual rain would start so quickly.  It was a pretty severe downpour!  We still had about six blocks to go, and I just laughed.  Gavin, too.  We ran a little bit, we sang songs about rainy days, and Gavin said he wanted to have a picnic in the rain when we got home (to which I would have happily obliged but the rain stopped when we were just two doors down). 

Our first few days here have been very busy, but now it is slowing down and I look forward to settling in at the beach, taking long walks, riding my bike, watching the waves, and spending time with all of our old friends.  We have been so overwhelmed by the incredible friends we've made in Pawling and how many people are working so hard for the foundation, and every time we come back to Long Island we are also reminded of how many wonderful friends here want to get to work for Ty, too!  Great things are happening, and it's all because of you.  Because of your love and support. 

In fact, one of my friends that I made since Ty was sick is all the way out in California and we have yet to meet in person.  However, she supports the TLC Foundation and has worked really hard to conduct a number of fundraising activities in conjunction with her son's football team.  Her most recent activity was hosting a car wash and she shared with me this beautiful story...

I wanted to share a story from the carwash that really illustrates the goodness that can come from giving so much to a great cause such as our boys fighting for other children so that someday they can play a sport or live a life. While Joe and I were setting up the car wash Sunday morning a young man rode up on his bicycle and asked if we could wash his bike. Joe said of course and the young man asked what it was for. Joe explained that we were raising money to support our boys going to San Diego and 50% would go to fight kid’s cancer. The young man whose name was James was so touched by this he asked if he could help wash cars with us! James ended up staying and washing cars the entire 4 hours in the 115 degree miserable heat, he even rode his bike to the store and bought a case of water for the boys and parents. He said he needed to do something good that meant something.

Our kids fighting for other kids touched someone else’s life yesterday and showed us and the boys what a great thing they are doing. It does not matter the amount of money we raise every penny counts and just spreading the awareness and doing good as often as possible is what we want from our wonderful football players. Thank you all again for working so hard to make this happen.

Thank you all so much for this.  These stories help Lou and I cope, and keep us working so hard on Ty's Foundation because we see that it is making such a difference on so many levels.  It means so much that what happened to our baby boy matters, and that he continues to inspire great things no matter how big or how small. 

The Muddy Puddles Project will be featured tomorrow morning, June 12, on national television.  The Doctors will air at 9AM on CBS here in NY, but the times vary depending where you live so you can check here for local listings.  My segment is toward the very end, and I will be sure to post the link the following day.  Thank you all for your support - I am nervous.  I hope I don't look/sound foolish!!  I have been holding off on heavily promoting the Muddy Puddles Project because we were waiting for this segment to air.  Hopefully it will jumpstart this terrific campaign and drive lots of people to the August event! 

Thanks to our great friends at Buzz Creators, I was also featured as a "Today's Honoree!"  on Friday.  It really was such an honor and I was so flattered to have been nominated, let alone selected :)  As these media placements continue trickling in, I get excited that some day all of this attention will start an awareness avalanche!

Sunday, June 2, 2013

We love Gavin so so so so so so very much

How much do I love you, Ty?
BIG much!
How much do you love me?
BIG much!
Well, I love you big, huge, giant, enormous, Gi-normous, tremendous all the way to infinity MUCH!”
Ty had been saying “big much” since he was two years old.  Before he was diagnosed later that year.  He had trouble making the “ch” sound, so it always sounded more like “Big Muh!”  Adorable regardless.  You can click here to see it/hear it for yourself.  This video was recorded post diagnosis, after his speech started to show the effect of the wretched tumor, but it certainly isn't any less adorable. 

The same routine of telling one another how much we love them is a little different with Gavin, he has his own thing.  It started with Lou at bedtime.

How much do I love you, Gavin?
So so very much.
How much do you love me?
So so very much.
Well, I love you so so so so so so so so so so so so so so so very much.
Then it becomes a funny competition of who can show their love more based on the number of “so’s” we can say.
Well I love YOU so so so so so so so so so so so so so so so so so so so so so so so so  <big breath> so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so very much <insert exaggerated, so out of breath, ready to pass out gesture>.

Yesterday was a great day for the Campbell’s, for Ty, and for the foundation.  The wonderful members of the Back Draft Motorcycle Club selected Ty and our charity to be the beneficiary of their first ever organized fundraiser since the club was created in 2012.  It was an incredible day from start to finish.  I was so tired by the end of the day that I fell asleep in the middle of saying goodnight to Ty in my prayers and woke up telling him “good morning.” 

We started out at the Pawling Triathlon to cheer on Aunt Theresa and Uncle Harry.  This was Aunt Theresa’s first Triathlon, so I brought Gavin and his cousins to cheer her on (and Harry, of course) during the swim, the bike and at the finish line.  Her toes were painted blue with ladybugs in honor of our special boy.  They both did so well!  What an incredible inspiration it is to see such dedicated athletes pushing themselves for the sake of achievement.   The very act of competition and personal accomplishment represents the core of making the most of your gift of life and health.  “I RUN BECAUSE I CAN!”  After seeing children who can't, what more reason do you need?

When I took the kids over to the street to see the run portion of the event, I bumped into a wonderful family of Ty supporters, The Melchner’s, who were there to put “TY-Athlon” flyers on the car windows to promote our first annual tri on behalf of the Foundation.  They braved the heat with their two young girls and it was such a treat to finally meet them all and thank them for all they are doing. 
I will be sure to post more details about the TYathlon soon, but the basics are listed on the flyer below for all those who are interested.  It is scheduled for September 21 in Mahopac, NY, and you can register through by clicking here.  We will have a Team SuperTy fundraising page set-up on for those competitors who want to join us by committing to additional fundraising as you train for the event.  I will post more information on that process soon.  In the meantime, if you have any questions please email Debi at

If the September date doesn’t work for you, or if you live closer to the city, there is still time to register and start fundraising for the Miles for Hope 5K in Flushing, Queens.  CLICK HERE to access the registration site (then click on "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).  Finally, if you can’t run the 5K but wish to support the cause, you can instead click "donate to participant" and search for Cindy Campbell to make a donation:)  Thank you so much!

After the race yesterday, we all headed over to the amazing "Ride for Ty" fundraiser at Patterson Fire Department.  We rolled into the parking lot to see a variety of huge bouncy houses and slides, dunk tanks, cotton candy, sno-cones, face painting, etc., all donated by the wonderful owners of Fun Zone Inflatables.  The kids had SUCH a blast.  The attendees were so generous and it was a very overwhelming/emotional afternoon for me to see so many people donating to the cause.  We were presented with a huge check from Backdraft Motorcycle Club, and there’s more to come after all of the amazing auction items and such that took place throughout the day!  I can’t thank Chris and all the guys enough.  That event was so wonderful, and it took a whole lot of hard work.  They did an amazing job and raised a ton of money. 

I would also like to extend my thanks to the Patterson and Mahopac Fire Departments, Depot Wines and Liquors for sponsoring the event and Once Upon a Child toy store for their generosity toward Gavin (a gift certificate for a new bike!)  And a very special thanks to Lisa Beth Action who volunteered to help out of the goodness in her heart, and who made so much magic happen.
I rarely ride, but Lou was on a bike along with his Dad, Rich and Debi, Chris, Charlie, Anthony, Ed, Rossano, Rudy and our friends at the Iron Riders MC and various other motorcycle clubs that participated in this amazing, albeit HOT (92 degrees!), day of fun.  It was such an honor for me and my family.  Lou is still talking about what in incredible feeling it was to ride with well over a hundred wonderful people who came out to honor Ty.  He said he felt Ty right there with him, riding on the handlebars with the wind blowing through his totally awesome hair.  Debi said that pulling up to the party afterward and seeing this tremendous sign hanging off the ladder of the fire truck brought her to tears as they rolled up. 

Thanks so much to all those that participated.  I am still smiling after such a great weekend.  All for Ty.  Always for Ty :)  Makes me happy.  
Before signing off I want to quickly address the recent post on  A lot of people have sent me messages of concern, and I noticed some “shares” on Facebook.  I just want you all to know that I am very aware of what happened.  I am and have been upset about it for months since I first heard about the suspicion that there was a false blog “borrowing” a lot of information from my own writings at  I am glad that this wonderful group of caring individuals were able to finally track down the person responsible and take action (the Remembering Reilly blog has been taken down), but I am mostly just sad and sorry for that person.  She emailed me a scared and heartfelt apology after being caught.  She is only 17 and I totally and completely forgive her.  Please respect my wishes to forgive her too, and join me in hoping that life brings her mental health and happiness so that she won’t be driven to do something so hurtful and harmful ever again.  Let's choose love and forget that ever even happened. 

Goodnight everyone.  XOXO.  There were so many stars in the sky all weekend long, it makes me want to stay up late and sit outside with Ty tonight and every night.  I think I might have to, just for a few minutes before heading upstairs.