Thursday, November 29, 2012

Misery does NOT love company

If there is one thing I am sure of... that is I am almost always strong when I am around other people.  I rarely cry when talking about Ty or any every day thing.  I think about Ty every second of every day, but when I am among other people I manage to hold it together very well.  I can honestly say that I enjoy company because of that fact. 

I cry every single time I am alone in the car.  I cry every time I take a shower.  I cry when I walk into a supermarket alone.  I cry when I see something Ty would have loved, like the rainbow candy stick at the quick mart the other day.  I bought one for him.  It was silly, I know, but I don't know if I would have been more sad ignoring it and validating the fact that Ty is gone, or acting in denial and buying it for my five-year-old son who I will never get to give it to.  I decided to go the denial route and just buy it.  It's sitting on my kitchen counter and now I don't know what to do with it.  I promise you that if Ty was with me, that is 100% the candy he would have picked.   Actually, I should probably bring it to the office and just put it in Ty's candy cart so someone can enjoy it while we are hard at work on the foundation!

 
I talk to Ty all the time.  Sometimes I feel he is with me, and other times I feel so alone.  I just repeat myself over and over.  "I miss you, I love you, I want you back, I'm so sorry you suffered so much, I hope you are okay."  It's all I can think of.  Those five short phrases perfectly represent all of what I am feeling every second of every day.

Ty just weeks before diagnosis
Thank God for Ty's foundation.  I haven't been able to update this blog because I have truly been inundated with work trying to keep up with everything.  We have SO MANY big ideas, and so far we are off to an incredible start.  We will be launching the new website soon.  We will be introducing The Muddy Puddles Project.  We will be hosting events and opening up a merchant site to buy SuperTy products.  All of it is very exciting. 

Yesterday I attended a roundtable with New York's top radio stations to try and impress them with our foundation so we can book an interview or two in the future.  I worked really hard to pull together an informative press kit so I really hope something comes to fruition.  Even if it's just a PSA, that would be incredible.  It is so important that we can continue to get the word out about Ty's story and use that as a platform to share the facts about pediatric cancer/spread awareness. I truly feel this is only the beginning of all the amazing things Ty will do. 
 
Some of you may remember me writing about a bracelet that I wore every single day for over a year.  It had a heart charm engraved with the words "keep fighting" and it used to always reassure me that we were doing the right thing by Ty.  When we left the hospital for at-home hospice on September 17 was the first time I noticed it was gone.  It was simply missing.  I didn't hear it fall anywhere and I couldn't remember, for the life of me, where I saw it last.  I was sure it was lost in the hospital, and how fitting!  To lose my "keep fighting" bracelet on the day we decided to throw in the towel. 
 
Well, the other day I found it.  I was moving Gavin's mattress to make his bed, and there it was!  Right there in the middle of the floor, underneath all the bedding!  I have changed his sheets frequently since I lost the bracelet so I can't figure out why I haven't found it until now.  I like to think that Ty put it there because he felt now is the time for me to find it.  Time for me to start fighting again.  Not for his life, but for all of the other little kids just like him.  And I promise you that is what I have been so busy doing therefore I've been out of touch a bit.  Yes, I'm crying.  Yes, I'm sad all the time.  Yes, I am vulnerable.  But don't worry about me because I am also very busy.  It is so good for me to be able to pick my dusty gloves off the floor and get back in the fight.  I feel I am slowly coming back to life when I am busy at work on his foundation.  It's not the life I want, but I still have to do what I can maintain a life with passion.  Ty gave that to me.  A reason to be passionate again and to work so hard toward the cause. 

I still have a tremendous yearning for the hospital.  I tell Ty all the time that I would do anything to be with him again, even if it means living with him in the hospital forever.  I know it sounds like the worst life imaginable, but if he was in it my life would be better no matter what.  In the depths of my soul I realize that I don't really want that for Ty's sake.  That it would be incredibly unfair to Ty to continue living a life in pain and confined to a hospital bed.  But my irrational side just can't get over how much I need him here with me, and I can't reason with my irrational side so sometimes those ideas do end up consuming me for a while.  I miss him so much, I want him back at any cost whatsoever.  I'm trying to make a deal here and nobody will listen. 

I finally mailed hundreds of thank you cards today.  For sympathy cards or mass cards... we are so appreciative.  I struggle so much when signing the card, you can't even imagine.  I sign "Love, Lou, Cindy, Ty and Gavin" to everything for years and years.  Today I wrote in Ty on accident.  Then on the next one I started crying and omitted both Ty and Gavin just to feel better.  Finally, on the third card, I wrote "Love Lou, Cindy and Gavin."  Do you know how empty that sounds?  How awkward it felt as I put the pen to paper writing those words?  Ty belongs there.  It's so unfair. 

Lou and I are missing him in our bed the most.  Where he's been sleeping pretty much ever since this :)



THis is going to sound ridiculous, but it's true so I might as well share it with you... A lovely organization mailed a "Ty" doll to Gavin, but upon opening it we got so excited that Lou and I took it and put it in our room instead.  So we can sleep with "Ty".  The NY Giving Doll program sends a rag doll that resembles your child.  It was such a sweet thing.  He has green eyes and curly blonde hair.  We snuggle this ridiculous doll all night long.  I truly find comfort in it, as silly as that sounds.  I guess we are just having a really hard time letting go.  I want to sleep with "Ty doll" forever and I just might!

Saturday, November 24, 2012

The Worst Kind of PAIN

Today has been one of my worst days.  I went to bed feeling very heavy last night, I slept terribly, and I woke up knowing that today would be a struggle.  I threw myself into picking up around the house and talking with Lou about what we should do today, but I couldn't shake the pain.  I felt it creeping up on me and I just knew that the darkness was catching up with me.  I exploded in the car until Lou turned it around to take me home.  I fought with him over things that have nothing to do with Ty.... but my emotions and my anger had everything to do with Ty.  I was doing everything I preach against.  I totally stressed out over how much I had to do today... how Lou didn't even feed Gavin breakfast this morning... the dishes that were left in the sink.... why do I have to do everything?...  All of it was just my pain catching up with me.

Lou dropped me off at home at my request so I could be alone.  I've been wrapped up in Ty's monster blankie and crying ever since, with occasional trips into his Captain America room to look at all of his favorite things.  I even pulled down his basket of medicine and yelled at it "this was supposed to save you!  Why didn't this work!?!?"  Eventually I slipped it back up on the shelf, untouched.  Some day I will have to empty all of that, but when I saw that one of his belly tubes still had some fluid in it that was once inside Ty's belly I realized I may never be ready to throw that stuff away.  I had the fleeting and most disgusting urge to drink it so I could have him part of me again, but luckily I didn't follow through because I am sane enough to realize how totally INsane that is.  Someone else will probably have to get rid of all that stuff for me. 

This grief is the worst kind of pain.  I wonder if people cut themselves to redirect all of the mental anguish into something physical.  As if the physical pain might serve as an outlet for all of the pent up emotions.  The way I feel right now, I don't think cutting myself with a razor would suffice.  I need a dull, rusty nail and still it would pale in comparison to my real pain.

I have no intentions of causing myself physical harm, but today I hurt so much that it almost sounds like a realistic option.  Luckily I am very grounded and would never follow through with something like that, don't worry.   There is no solution in hurting myself physically on top of the pain I already have.  It can't get any worse than this, so the rusty nail thing is just gross and might send me to the hospital, which is not exactly a healing alternative - I know. 

The crying is starting to subside.  It's been a couple of hours.  I had a terrible stomach ache, too, which seems to be waning.  I may be able to pick myself off of this couch after I finish writing this.  There is a couple of recent conversations we had with Gavin, that I want to share first.  I believe he is handling all of this so well, I am so proud of him.

Gavin is such a little man.  He takes a very long time on the potty, and since he's only three he insists that I keep him company the entire time.  We have some adorable conversations to pass the time. 

Last night I asked him,"What do you remember most about TY?"
"Umm.  I wee-memba pwaying wif him."
"Oh, that's so nice.  What else to you remember?"
"Umm.  Scooting wif him."
"Huh."
"Scooting wif him on the floor (Gavin used to imitate Ty when he scooted around the house on his butt around this time last year)"
"I remember that too, that was great.  You two had a lot of fun together."
"Yeah! And I remember Ty wearin' his SuperTy costume and flying all over the sky!"
"Well, I do think that's probably what he's doing right now, don't you?"
"Yeah!  In the hos-piddle."
"Nooo.  Ty is not at the hospital right now.  Where is he?"
"Umm... Wif GAWD (aka "God" in Gavin speak)." (Gavin said this with a big smile)
"That's right, with God in heaven."
"Is his house like my house?"
"No, I think it is much bigger and much nicer and maybe it even sits on top of the clouds!"
"I want to be wif GAWD and Ty, too."

Of course he does.  It sounds like so much fun.  That was last night.  This morning Lou told me that Gavin asked Lou to tell him about Ty out of the blue, so Lou sat him on his lap and scrolled through hundreds of photos - old and new - on his phone.  I think it's amazing that Gavin is still so interested in Ty.  It makes me happy.



The other day I took Gavin to get his picture with Santa.  Oh how I wish Ty was there on the other side with Santa.  Gavin was a pretty good sport about it, though.  Very cute.  We are supposed to pick out our Christmas Tree today, but I don't think I have it in me.  Every year we took Ty to the tree farm and he would pick out the biggest, nicest trees for our family and for Aunt Debi.  How can we do that without him this year.  Gavin will have to be in charge, but I am going to be a basket case being there without Ty.

The other night, there was a huge noise that startled all of us in the house.  We live in a fairly rural neightborhood and it definitely came from our house.  It was late at night and I said "what the heck was that?!"  Lou began looking all over the house and so did I.  We checked every shelf in every closet, every hanging bath toy, etc. and we just couldn't figure out what it was!  The next day, Lou discovered that it was Ty's tiny bicycle that fell of a shelf in our garage.  It hasn't otherwise moved in two years and there was no wind last night what-so-ever.  I like to imagine that Ty just wanted to know that now he is doing all of the things he wasn't able to do in life.  Ty is amazing.

Ty Campbell, August 2010 (at the time of diagnosis)

Thursday, November 22, 2012

Thankful for Ty

Thanksgiving, 2011

It goes without saying that the holidays are the hardest.  Yesterday, my friend's daughter asked me "how many kids do you have?" and it was the first time I hesitated to answer... "two."  I am mad that I hesitated.  Ty is always mine no matter where he is.  I just feared that she might follow up with some additional questions and I am so glad she didn't. 

On this day, we are supposed to focus and reflect on the things we are thankful for.  I think Lou and I are on the exact same page when we say that we are so thankful that we were given Ty regardless of how everything turned out.   But I found it really hard to remain gracious today.  Lou was much better at it.  He had beautiful things to say about Ty all day today, and because of that I awarded him his very first guest blog entry :)  That's right, Lou wrote a blog tonight.  I pasted it below, and I think it is amazing.  He really is the best Daddy in the world, and after a long day where I had to muster up a lot of strength to find a single thing to be thankful for, I was reminded that I am most grateful for him.  My rock.  My love.  My best friend.  I could never be without you. 

BY LOUIS CAMPBELL:
Today is another first that we knew would be so hard.  But I woke up this morning feeling more thankful than sad.  Although the sadness is and will always be there, I have so many things to be thankful for.  Last Thanksgiving I wrote a poem for Ty called "Thankful." that I pasted below.

Thankful - by Louis Campbell
I am thankful he is alive
I am thankful he can hold his head up
I am thankful he can breathe normally
I am thankful he can see straight
I am thankful he doesn’t have head pain
I am thankful he can wiggle his toes
I am thankful he can eat and drink
I am thankful he is home
I am thankful he is smiling
I will be thankful when he can walk
I will be thankful when he can go to school by himself
I will be thankful when he and his brother can wrestle
I will be thankful when he graduates
I will be thankful when he becomes a father
I was thankful yesterday
I am thankful today
I will be thankful tomorrow

On this day last year, I was thankful for all of the things that Ty could do despite what he had been through, and I was thankful for the milestones I wished to see him achieve.  None of which came to fruition, however, tomorrow has come and I am still thankful. 

First and foremost, I am thankful for ever having had Ty.   
I am thankful that Ty smiled until the end. 
I am thankful that Ty took his last breath in my arms.
I am thankful that although I miss him, I don't have to watch him wince in pain.

Some people might think, having experienced all that I have as a father, it would have been so much easier to have not had Ty at all.  I feel differently.  I feel so blessed to have experienced something that was so special.  We experienced so many things together that fulfilled my life. I will never have to wonder if my son needed me or loved me.  I'll never have to wonder if I needed him or loved him.  

As a father, you want to know you will be a good parent.  You try to teach your children right.  How to live and love and enjoy life.  How to be strong and responsible.  You want to know that your child knows he is loved. You want to know that you did everything right for your child. It only took five years for Ty to let me be 100% sure of these things. 

I don't think anyone reading this would ever question if Ty showed strength, courage and happiness. You also know that he showed love, but I wish you could feel the magnitude of the love we shared.  Ty was loving to everyone, but there were only a handful of people with whom he truly felt secure enough to close his eyes and know that his life was safe in their hands.   I am Ty's father.  I was one of those people for him.  For this, again, I am thankful.  Happy Thanksgiving.  Always remember Ty.  Always be thankful. 

Louis Campbell

Tuesday, November 20, 2012

The Office

Today was a good day.  I spent the whole day working on the Foundation.  Thank God I have this opportunity to throw myself into Ty's cause.  This is how Lou and I cope, and how we will survive.

The first half of my day was spent brainstorming our upcoming activities with a kind, generous and passionate new friend who happens to be a terrific PR consultant (with lots of breaks in between just to talk about Ty, to laugh, to cry a little and share funny stories in general).  It was so good for me to get out. 

The drive down to Yorktown was very similar to my morning routine drive to Phelps Memorial Hospital with Ty while he was getting hyperbaric oxygen treatment.  He has 60 treatments there over the summer, so it was a routine that is still very fresh in my mind.  I had a good, long cry on my way in.  The car is where I find myself crying the most, and I talked to Ty through my tears during the entire drive.  Makeup is a problem these days because it is always running after I drive anywhere for too long.   Today I pulled over to put some on before I got to my destination so I wouldn't look so banged up and it worked out well.  I may have to remember that :)

I went straight to the office afterward and I was overwhelmed with the generosity of everyone.  There were unexpected packages everywhere!  Things are really coming together here and soon we will be up and running!  A big thanks, too, to Debi and Rich for coming by today and getting the heat fixed so we can actually work here this winter!  We're getting there - look at all this loot!


I smiled big when I opened the box with a gumball machine and blue gumballs for TY.  This entire office is going to be all about him and that makes me happy.  I even brought his candy cart from his room so we can snack on candy all day in honor of Ty.  He is going to be so excited when he sees this place finished.  So am I!

For everyone who has been so kind to volunteer your time or furniture, please know that I read your messages and I am in the process of getting organized.  I will be in touch, and I am so grateful. 

Candy Anyone???

Breathe in, Breathe out

Sometimes I feel so down, that's all I can do is breathe until I snap out of it.  I received this in the mail today. It was written by Laura Bauer and published in Bereavement Magazine in 2001. I thought it was a good description of how it can feel to lose a child.

You open your eyes, the nightmare is real
Breathe in, breath out - try not to feel
The weight presses down on your chest
Your lost the one you loved the best
You roll from the bed and continue to breathe
How difficult now it is to believe
As you stand, a panic enveloped your heart
It comes from the days of being apart
Breathe in, breathe out, it will subside
As reality hits, and you know that your child died
You shower and dress by pure will
Your life has become one bitter pill
Breathe in, breathe out, and concentrate
Don't think, don't feel, don't contemplate
As you pull the car out and begin to drive,
Slowly you notice that you are alive
Heading east, to your surprise
You see a glorious new sunrise
And you feel something - ever so slight
A lightening of heart - not quite so tight
Day by day you start to see
The things that will allow you to be
A survivor, a fighter, a poet of late,
A leader, a teacher, a healer a mate
You know in your heart the wound will be there,
But you also know that you have your air
And you have life for whatever it's worth
To keep on fighting and showing your mirth (I fight for TY)
You will always remember your child's tenderness
The loving and giving with each little kiss
Your child will be there when you go to sleep
The memories are yours to treasure and keep
So continue to breathe, it is important to do
And eat a good meal, and get some sleep, too (ha!)
For many love you and worry a lot
All we can say is "continue to breathe"

Ty Campbell, April 2009

I am taking teeny tiny baby steps toward coping.  I can't bring myself to clean out his favorite foods from our pantry (the stale fruit snacks, the salty cashews that I bought at the hospital, the blue bottle pop, the half eaten bag of dried cranberries and the box of "Ty lollipops" from the ladies at the bank), but I was so proud when I cleaned his room and put all of his therapy equipment aside for donations. 

There are also the "firsts" that are steps in healing (I guess).  Like the first time I let Gavin play with Ty's toys, or the first time I went to the supermarket without him.  I haven't gone down the candy aisle yet - I avoid it like the plague - but someday I will make that step, too.  Some days I am so strong, and others I am just a mess.  I guess that's the way this works and today was more of a "mess" day.  I was proud last week when Lou and I took Gavin to The Daily Planet (a favorite of Ty's) even though I felt like there was a boulder on my chest the entire time, but I couldn't bring myself to order a strawberry milkshake for Gavin even though I knew he would love it.  That is the very last thing Ty tried to swallowed in his life.  One teeny, tiny sip of a strawberry milkshake. 

I truly miss seeing Ty's doctors and nurses.  Looking back, they were family.  Can you imagine how weird it is to go there every week and visit with the people who were fighting for Ty just as hard as we were, and then we just take him home and walk out those doors for the last time - leaving them all behind after over two years together.  They haven't forgotten about us - not at all.  It's the opposite, really (because who could forget Ty?).  Ty's nurses have all been in touch.  They check in on us, they really care so much.  I am happy they were all a part of Ty's life.  I used to hate being at the hospital.  I hated it so much, because I hated that Ty was sick.  But now, I wish he was sick - that we could go back to the hospital - because I would rather have him sick than have him gone.  I don't always believe that, but when I am missing him and at my lowest like I have been all day today, I feel like I would trade anything to have him back even if we had to live with cancer forever.  I say "we" because all of us lived with the cancer right alongside him.  What an evil disease it is. 

In my heart of hearts, I know that's not what we ever wanted for Ty.  I would say, unless he can get himself off that couch and onto his feet, then this is not the life that I want for him.  That he would be better in heaven.  But, my selfish side wants him back at any cost.  I know it wouldn't be fair, but I want to hold him in my arms like you couldn't imagine.  I want to hear his voice so desperately.

I have a lot on the agenda for the foundation tomorrow, so I am signing off.  Goodnight, and I look forward to updating you on the progress made!  Thank you all so much for loving Ty and for fighting for this cause. 


Sunday, November 18, 2012

Weekend update

"Perhaps they are not stars, but rather openings in heaven where the love of our lost ones pours through and shines down upon us to let us know they are happy." (thanks for this, Kathleen).

Tonight was a beautiful night and the sky was filled to the brim with stars.  I couldn't stop thinking about Ty.  I've been so sad, which I know is normal, but Lou and I keep busy which I think helps us to remain as balanced as possible given the circumstances.

When I gave Gavin his bath tonight, my pain caught up with me.  As I washed his hair, I did something I've never done before.  I concentrated on imagining that I was washing Ty's hair, instead.  Normally I would briskly rub Gavin's head and rush to rinse him so he could get back to playing, but tonight I lathered the soap through his curls with gentle swirls while he was acting out something with his toys.  I let my hands linger and I visualized where Ty's shunt was, where all of his scars were within his scalp, I heard his voice telling me to be careful (he was always apprehensive about getting water in his ears or eyes), and I saw his face instead of Gavin's.  It was so real and so painful.  I became completely lost in my memories of Ty's body.  How his soft feet felt cupped in my hands, how his fingers felt curled around mine, how his head was bumpy behind his ear where the wire mesh "plates" were in place under his skin, how I needed to clean his belly tube with extra care, how his scar on his belly was so crooked from being opened in the same spot several times (shunt surgeries).  I could go on and on about every little detail right down to the exact way in which the adorable nail grew on his pinkie toe.  As much as I cried, and as hard as it was, I'm so glad I remembered everything so vividly.  I was so afraid that I was already forgetting.  I don't want to forget a single thing about this angel baby.

Baby Ty after a nice, warm bath - 4 months old

We had a nice weekend with some of our best friends.  They are so good to us, they surprised us and treated us to a fun-filled weekend away.  We all spent Saturday - Sunday in the Poconos at The Great Wolfe Lodge and Gavin had the best time.  Of course, spending a weekend at a place like that is all for the kids, but it's not the type of thing we ever would have been able to do while Ty was sick or disabled.  We were happy to bring Gavin there and to spend time with our friends.  We had a lot of fun in the waterpark with Gavin, and just watching him playing all of the games available.  He liked the pool and the slides, but enjoyed the glorified "Chuck E. Cheese" type of arcade the best.  Chuck E Cheese was one of Ty's favorite places in the world and I was so very aware of his absence the entire time.  Even though we rarely took him there (for soooo many reasons, germs being the biggest one), every time he saw a commercial for Chuck E. Cheese he would yell across the room "I GO THERE!  I WUB THAT!"  I hope Gavin felt Ty's presence while he was earning those tickets and riding in the ice cream truck :)  How I wish they could have been enjoying it together like I always imagined they would some day. 

Gavin and Luke had a great time.  I love to see him out with friends, having fun, doing normal things that kids do.  It was his idea, of course, to wear the costumes that night.  Not as normal, but so cute regardless.  Gavin wears his Spiderman costume 12 hours a day (at a minimum) except for when he's at school or sleeping.  Look how cute they look on this ride.  It was a rollercoaster simulation for grown-ups and they were SO SMALL in those seats, but they loved it!!



Always missing Ty.  I hope to see him in my dreams soon.  Thank you all so much for your kind words and endless support. 

Friday, November 16, 2012

Children see angels

I can't tell you how many stories I have received from others who have seen signs from Ty, and even more stories about their children saying things that are odd in the sense that they may be seeing or feeling a spiritual presence.  Maybe even Ty's.  It makes me feel so good knowing how many people out there are still thinking about Ty and seeing his signs.

Children are said to be especially clairvoyant, and I believe it.  Not Gavin.  I think he is just in his own fun world, kind of oblivious to anything like that (here he is in a bag again, I posted the wrong photo earlier).

 

But Ty, he was very aware even before he got sick.  He was so special in every way, especially spiritually.  At such a tiny, young age, when there was so much in his life to be afraid of, he wasn't afraid.  I believe it is because he knew his guardian angels on a more tangible level that most of us can understand.  He saw them.  All the time.  I used to have to snap him out of his stares sometimes. They weren't blank stares - unaware of his surroundings - it was just as if something in the distance captivated him for a moment. I even see that stare in pictures sometimes, like this one.  I clearly remember taking this picture.  I kept calling for Ty, who was 100% aware of what was going on and what I was saying, but got caught up staring off at something else.  He caught his amazing fish just moments after this picture was taken.  The fish that was sent by his angels, just for him, in the middle of a hot afternoon when no fish are supposed to be caught.  Look at his face and you can see that he is witnessing something magical. 


Sometimes I worry that all of my stories sound desperate.  Like I am the sad, lost mom just clinging on to the idea that my son is still with me.  That Ty himself sent me a rainbow or a ladybug might sound unrealistic.  I realize that it may sound that way... rainbows and ladybugs have always existed... but it is so important that I believe this.  And I truly do believe it.  And I know so many of you do, too.  Believe me when I tell you that Ty is everywhere.  He is the air that I breathe and the love in my heart.  He is doing amazing things, even more amazing now than ever. 

It will be one month tomorrow.  One whole month without him.  It doesn't feel that way, though. It still doesn't even feel like he died sometimes because it's still so new, then other times I am literally pulled to the floor by grief when his loss becomes so very real.  Most of the time, I still feel like he is right there in my backseat everywhere I drive.  I still look for him on the couch every single time I walk into the room.  I still turn to the middle of my bed so I can face him when I go to sleep.  His absence is so present, if you know what I mean. 

I miss him so much.  More than I can ever put into words.  I think about him every single second of every single day.  I don't need to look for things to remind me of Ty, because everything already does.  Every song I hear, every store I step foot into, every toy I see on a shelf, every piece of candy, every little kid I encounter, every cloud in the sky, reminds me that he's gone.  But it also reminds me that he lived.  And that he was amazing.  And that I am forever changed, a better person, because I was lucky enough to be his mommy. 

I am writing this from the new Ty Louis Campbell Foundation office space.  Today I was given a printer, some paper, pens and post-its.  I brought in a bunch of Ty's best artwork and a slew of cleaning supplies.  It is coming together and I know we will have this place up and running in no time.  It's going to be amazing. 

The Hudson Valley Knights!
The Foundation is off to an incredible start, and Ty continues to be honored in amazing ways (along with all of the littlest cancer warriors fighting childhood cancer).  Yesterday we were presented with a unexpected and very generous check from the Dutchess County Legislature (thank you Bolner family!) on behalf of the Hudson Valley Knights Junior Pee Wee football team.  These boys are true champions and they have been wearing gold shoelaces all season.  They play football with fierce dedication and they have been playing for TY with all of their hearts.  They refer to Ty as their teammate - forever.  This team has touched our hearts more than any other.  These boys had an incredible year, they are true champions, and last night they handed over their trophy to Lou, me and Gavin!  Ty really will be a part of their team forever, and that incredible, hard-earned trophy has an amazing home at the Ty Louis Campbell Foundation :)  We can't thank you guys enough.

 
 

Wednesday, November 14, 2012

Look up for ladybugs

I developed a morning routine in this new life of mine.  After we get up, I spend two hours playing hard with Gavin before school.  Lots of super heroes.  Lots of running around.  Lots of hugs, kisses and tackles.  We laugh so much, and I'm really laughing!  My mornings are happy.

Then I drop him off at school, and I usually start crying as I'm pulling away in the parking lot.  I think about Ty the entire way home.  When I get home, I look for Ty in his spot on the couch and I cry some more.  I never had time alone like this before and I don't know what to do with myself!  I need this time to grieve for Ty, it's probably good for me, and luckily I am usually able to snap myself out of it once the mess me and Gavin left behind from earlier starts encroaching.  I am a little obsessive about cleaning so that helps me wipe my tears and clear my head by throwing myself into thoughtless busy work around the house.  Then I get to work on the foundation and before I know it my free time is gone and it's time to pick up Gavin. 

Yesterday and today I was crying more than my usual routine.  I couldn't snap myself out of it like I often do.  I was in hysterics yesterday morning.  I tried to do the dishes, but I couldn't stop crying to the point where I couldn't even see what I was doing.  I turned off the water, pulled off my gloves, and cried hunched over the sink.  For whatever reason, I was compelled to look up searching for Ty and of course, wouldn't you know there was a ladybug right there on the ceiling above.  I immediately felt better.  100%.  Didn't cry the rest of the day.  This morning I had the same problem.  I was sitting in Ty's spot on the couch crying and angry that I was able to sit in his spot now.  After too long, I picked myself up and started cleaning up Gavin's breakfast through my tears.  I couldn't shake the sadness until something on the ceiling caught my eye.  Another ladybug, crawling toward me, in a completely different part of the house.  Thank you, Ty.  You are always with me.  I actually feel a little guilty that Ty is taking care of me now, when I should be taking care of him.  My love.  I know ladybugs are common, but the fact that they are always there when I need them to be is very comforting to me. 

Looking at pictures is another thing I do to help me cope (although it probably hurts more than it helps, I think I need this hurt in order to heal).   It's hard to reflect and remember, but it also makes me beam with pride and gratitude because Ty was just so incredible.  I am so lucky to be his Mommy.  Look at this video.  SuperTy.  What a courageous fighter he was.  Nothing could stop him!

WATCH HERE ON YOUTUBE or click on the picture below to play.

video

When looking through pictures, Lou also came across this one after I already posted about the marathon.  It is a front shot of him crossing the finish line with Ty in his arms.  I zoomed in as best as I could so you can see just how happy our boy was.  He was so excited!  I love that he is smiling so big and his hat is all crooked.  Just adorable.  Last November and early December were his best months.  He was doing so well, feeling so good, and getting so strong.  Right around Christmas last year is when Ty suffered a post radiation brain bleed that began the downward spiral, but he never let that get him down. 


Ty Louis Campbell is nothing short of awe inspiring.  I'm leaving you with one last picture that was taken just days before he died.  His spirit never faltered.  He never stopped loving life even when his was so very limited.  His story must be told so that he can continue making a difference in the every day lives of others.  Thank you for helping us to do that.  And let's all try to keep smiling in honor of the little boy who did just that. 




Tuesday, November 13, 2012

Gavin wants to die, but not really so it's okay

Iron Man was the costume choice of the day
Yesterday, Gavin started telling me that he wants to die.  I mentioned that we have been reading a lot of children's books on coping and such, and many of them use that term (which is okay with me).  But when he uses that word in a sentence like that, I can't tell you what it does to my heart. 

Gavin only wants to die in the context of missing Ty and wanting to be in heaven with Ty.  He says it with a smile.  Obviously he doesn't understand what it means.  He is three.  He thinks heaven sounds like a really great place, he loves God, too, so he thinks it would be fun to die.  When I told him that he will, but not until he is very old and has lived a fun filled life, he whines "No!  I want to die now!"  Oh boy.  How am I going to "un-do" this one?

The hardest part of these conversations is holding back my desire to say "me too."  Because the truth is, now that Ty is gone, I do not fear death in the slightest.  I look forward to going to heaven and seeing my baby again with every ounce of my soul.  I can't wait!  In the meantime, I will fill this painful time without him trying to enjoy the beauty around me, loving every second with Gavin and hoping time goes by a little faster than it used to. 

The foundation has a new home!
I am pleased to announce that the Ty Louis Campbell Foundation has a new office space!!  Our great friend, Dr. Charlie Marino, has given us rent-free office space in his building in Carmel.  It is the perfect space and I am so excited about this amazing gift.  Thank you, Charlie, for always thinking of us and helping the cause.  We love you so much. 

We need furniture, office supplies, pretty much everything... but I brought in some framed photos of Ty and some of his artwork and it's a start.  If you have any ideas on where I might find some quality office furniture that is being donated or otherwise thrown away, please email me at tylouiscampbell@gmail.com.  In the meantime, here is our new address. We are legit, y'all!  Next on my to-do list is to get our new website up and running :)

The Ty Louis Campbell Foundation
91 Glenieda Avenue
Carmel, NY 10512

Conference room.  We'll get there :)
Fordham Football
I wanted to make sure I posted a photo of our favorite team wearing their gold shoelaces and gold towels.  They had to pull some strings to get approval for all of this, and we are so grateful.  I pray this is only the beginning as more and more teams embrace the cause and wear gold to spread awareness.  On a local, hometown level, all the way up to the NFL!! 


I Carry Your Heart With Me
These words go through my head over and over and over.  All day.  I find this poem to be most true in every way. This describes perfectly the love we shared, and it brings me comfort. 

i carry your heart with me (i carry it in
my heart) i am never without it (anywhere
i go you go, my dear; and whatever is done
by only me is your doing, my darling)
i fear
no fate (for you are my fate, my sweet) i want
no world (for beautiful you are my world, my true)
and it’s you are whatever a moon has always meant
and whatever a sun will always sing is you

here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life; which grows
higher than soul can hope or mind can hide)
and this is the wonder that's keeping the stars apart

i carry your heart (i carry it in my heart)
- E.E. Cummings

My beautiful boy - I carry your heart with me (I carry it in my heart)

Sunday, November 11, 2012

Missing you, Ty. So much.

"These are the tiny humans. These are children. They believe in magic. They play pretend. There is fairy dust in their IV bags. They hope, and they cross their fingers, and they make wishes, and that makes them more resilient than adults. They recover faster, survive worse. They believe."

I can't stop saying "I'm sorry" under my every breath.  Every minute of every day, that's all that is going through my head.  I can't believe Ty didn't survive.  I can't believe he is gone.  I miss him so much I can't possibly put it into words.  I am lost and so, so hurt, but the worst part of all is remembering how much he endured.  Thinking about all that he went through in his treatment, and how sorry I am that his cancer killed him after such a brave fight.  In the last two years, the only thing that kept me strong was "knowing" that he would be okay in the end.  That he suffered so much, but in the end he would be rewarded with a charmed and beautiful life.  I am just so sorry that it didn't work out that way.  I was supposed to be able to take care of him... to kiss his booboos and make it better.  I told him over and over again that everything would be alright.

The quote above from Grey's Anatomy is posted to Mighty Mikey's caring bridge site.  I always loved it because it embodies everything we know as moms with chronically ill children. 

Lou and I used to watch Grey's Anatomy. I'm sure it was my doing, but he used to get sucked in along with me. Ironically enough, we both remember the episode we watched when we decided to stop recording the show. It was when Ty was a baby, but way before he got sick. Grey's always gets you with the patient stories, right? It was an episode with a Dad and his young, adorable daughter. She had been fighting for her life for a very long time, and she was finally going to die. As he frantically searched for options and talked about moving his daughter to South America for a new kind of treatment, one of the main characters (Meredith, maybe?) tried to explain to the Dad that she likely wouldn't survive the plane ride and that it was time to let her go. Enough was enough. Cue the heartbreaking goodbye and our non-stop tears while we watched from our couch - just imagining having to say goodbye to our own baby was inconceivable. "Let's never watch this show again," he said.  "Agreed. Never again." And, that was it. We never watched it again. Unbelievable that we would find ourselves in that exact same situation just a few years later, when our baby who slept peacefully in the other room while we watched TV, would give in to his cancer and die in our arms, too. Only this time it was real life.

Tonight I watched Gavin play in the big tub, the one that was always reserved only for Ty because it was large enough for his bath chair.  I couldn't stop the tears, I cried a river, because I was overwhelmed by the perfect curves of Gavin's shoulders, his round, healthy belly, his pudgy little fingers and his strong, straight back.  I compared every part of his body with my memories of Ty's naked body, instead.  Every scar that I've kissed over a thousand times.  I know the exact location, length and width of each. My poor, poor baby.  How skinny he was.  How beaten up he was.  How he never stopped smiling, regardless.  He was so amazing.  No wonder I was so sure he would be okay.  Looking back, I think he made me believe because I needed to even more than he did.  He put on his happy face through thick and thin  all of us.  God bless this beautiful boy.  Here he is just two days before we were back in the hospital for the very last time.  Smiling big, sticking out his tongue and teasing me. 


The ladybugs were everywhere today.  What I love most about the ladybugs is that they always appear at the perfect time to remind me that Ty is with me.  When I was staring out the window thinking about Ty, I was suddenly distracted by a half dozen of them that gathered on the screen.  Outside when I was flooded with memories of a healthy Ty as Gavin and I were playing on their swingset, another ladybug hovered in front of my face for what seemed like forever.  When Gavin was having a fit outside of a very quiet, very public place today, I was able to calm him down when a ladybug landed on my leg right in front of him and I showed him, "Look what Ty sent you!"  I let the ladybug crawl all over my hands so he could get a better look at it and he loved it. 
 
I am just sad, but I know that Ty is everywhere.  I enjoy hearing all of the stories from others who are inspired by Ty and who he visits with in his own special way, too.  I am so proud of all he is doing, even now, and I always will be.

Yesterday was a great day, in fact.  In the midst of our grief, people continue to do amazing things in Ty's honor.  Some of you have been following Ty's journey for a long time now, and you may remember that he was dubbed an honorary member of the Fordham football team last year.  He loved football and being part of the team was very exciting for him.  This year, his team wore gold shoelaces and gold towels, they collected funds for pediatric cancer research, and they wore "Ty" on their faces during the game.  We were there on the sidelines to cheer on our favorite team, they allowed us to participate in the coin toss, and they awarded us the game ball afterward.  It was very, very special and we are so grateful.  Last year they revised their "Fordham Fight" song to include him in the verse, "we'll sing our battle song for you, SuperTy!" and he thought that was the coolest thing. 

I just want to repost some of the words from one of those heartfelt players that we received last year.  I am so proud of them all that they continue to keep Ty in their hearts and to be inspired by him.  Last year I had big visions of Ty playing football for Fordham someday.  Yesterday at the game Gavin, who never showed an interest in football before, told me that he wanted to play with the team.

Ty, even though you are still a little boy, you are stronger and tougher than all of us big football players can ever be. We hope our song helps you keep on fighting like we know you will. You continue to inspire us and make us all so proud to be your friends.

You are such a brave little boy for everything you have done and overcame. Your little brother Gavin looks up to you for everything, and we want you to know that you now have 100 big brothers to look up to on the Fordham football team.
 

Ty, what you go through every day is a complete inspiration to each and every one of us. We look forward to a long friendship ahead because once you’re a Ram, you’re a Ram for life! Best of luck with everything! God Bless.

A Ram for life indeed.  Thanks to all of our "teammates" who showed real heart yesterday.  It was such a great day, and a great victory against LaFayette!  Congratulations on a winning season!

Lou and Ty at the game last year


Gavin on the field yesterday
Gavin is doing well, he is pretty oblivious to my tears (which I hide from him very well), but he has his own sadness at times.  He talks about Ty several times a day, unprompted.  He says things like "I miss Ty.  I wuv Ty."  It makes me happy that he thinks of his brother often, but I worry about him, too.  He is too young for bereavement counseling programs, but I have been reading him a bunch of great books on the subject and he seems very engaged in them.  In the meantime, I think going to school is the best thing for him because he truly enjoys being around other children after being so isolated for so long in this "sick" house of ours.  He is mostly happy, don't get me wrong, but he misses his brother and that is not fair.  I briefly mentioned this one recent development that makes me smile big.  Gavin has totally and completely adopted Ty's love of superheroes over the past few weeks.  He shows no interest in Toy Story anymore ;( it's all superheroes all the time.  Today he wore his spiderman costume for 11 hours.



As always, Lou has been very good about getting the family out of the house.  Yesterday was the game.  Last night we celebrated his birthday with family and friends.  Today we went to the buddhist monastery to enjoy the outdoors and some serenity.  Next weekend, the Great Wolfe Lodge, and he is even planning a long overdue weekend away for the two of us in December.  Slowly, we are trying to heal. 

The Monastery


Wednesday, November 7, 2012

Happy Birthday to Lou

Yesterday was Lou's birthday.  It was not a happy one, but we tried to make the most of the day.  We spent the day together, and went out to dinner with Lou's sister Debi and her husband Rich.  We laughed a lot, all things considered, and talked a lot about Ty (of course). 

Instead of recapping the details of Lou's first birthday without Ty, Lou asked me to reflect on last year's birthday.  As some of you may remember, last year Lou turned 40 and he ran his first marathon in NYC that same day.  It was all for Ty.  Lou and Debi ran together for Fred's Team, a charitable team that raises money for Memorial Sloan Kettering (all of the money Lou and Debi raised was tagged specifically for pediatric cancer research).  This year one of Ty's nurses was inspired to run for Fred's Team as well, and I am sad that the marathon was cancelled (but of course, understand that it was completely necessary). 

I was so proud of Lou.  26.2 miles is a really big deal.  He trained so hard and out of almost 800 runners on Fred's Team, Lou was a Top Ten fundraiser that year.  Amazing. 

The memories from that day are still so vivid.  The night before the race we took Ty to Dylan's Candy Bar in Manhattan for the first time (a place we have visited many times since).  Ty had his first cab ride.  He had his first experience at a sushi restaurant (where he didn't eat anything but the candy from his bag).  At the time he was four months cancer free, he had great upper body strength and was rebuilding the strength in his legs.  The day of the marathon I had to buy him a "New York" sweatshirt because it was colder than we expected.  The crowds made it impossible to use a stroller, so I carried him around Manhattan for the entire day. It was certainly exhausting, but I would do anything to repeat that day.  To hold him in my arms again like that and cheer on his Daddy. 


We went to MSKCC to see Lou and Debi as they passed in front of the hospital with all of the other Fred's Team supporters.  That was around mile 18.  Then we walked to Central Park to see Lou and Debi cross the finish line.  After a whole lot of magic and talking our way through checkpoint after checkpoint, the thoughtful security guard at the last finish line bleachers even allowed me to pass Ty over to Lou so he could cross the finish line with our best good boy in his arms.  Ty was beaming.  It was incredible.  I spent that day with Mary, Meghan, Rudy and Lynda and I couldn't imagine anyone else I would have liked to be with.  They helped me out so much that day and made it possible for us to be there for Lou every step of the way. Here is Lou and Debi crossing the finish line with Ty. Unforgettable. 


That night, after all of that, Lou and Debi dragged their sore butts out for a delicious dinner with family and friends to celebrate Lou's 40th birthday.  We will never forget that night.  SuperTy himself is the only person that has ever made me more proud than Lou did on that day.  I am so lucky. 

Monday, November 5, 2012

My conversation with Gavin tonight

I could bore you with the depressing details about today, but the story that best describes how I've been feeling all day can be told by simply recapping my bedtime conversation with Gavin tonight.  By the way, I just re-read this sentence and had to correct it because I had written "my conversation with Ty," on accident, instead of Gavin. 

I call Gavin "Ty" at least 10 times a day.  I know that's totally normal and I have done it since the day he was born (just like my mom calls me Theresa - and even, Billy - sometimes), but it's not normal anymore when the other child passed away.  There is a severe pang in my heart every time it happens, and I have to focus on my tone of voice when I correct myself to try and sound as casual as possible - trying not to let Gavin notice the mistake. 

Tonight, after our prayers, I reminded Gavin to say goodnight to Ty and to tell him how much we love and miss him. 

"G'nite, Ty... I miss you... Mommy?  Ty's body is in my heart."
"Yes, Ty's body is in your heart."

"Ty's toes are in my heart, too.  And his leg."
"Yes."

<Pause.  Sad tone> "Because, Ty doesn't have a body anymore..."
Oh God, that was hard to hear coming from my three-year-old.  What do I say?
"That's right, Gavin, because Ty doesn't need his body anymore... He is with God now."

"YES!!  YES HE DOES!" Gavin yelled.  "Ty need his BAH-DEEEE!!!"

"Why, Gavin.  Why are you saying that? Why does Ty need his body?"

Long pause.  Gavin, who is three, answers "because he is alone.... because he is all alone wif God."

That is all I think about every day.  How Ty is alone.  I know he is with so many others so I guess I should rephrase that somehow, but as his mother I can't help but imagine him being alone in the sense that I am not with him, Lou is not with him, Gavin is not with him.  It's just so unnatural and wrong for him to be out "there" - wherever he is - without me and without us being in the same place. He was just five years old. Even Gavin is worried about that, and I am so upset about it.  I don't know how to fix that. 

Sorry I don't have anything uplifting to share today.  That is just the truth about today.  It wasn't a very good one.   

GOOFBALLS!!  Just look at these two clowns :)

A tough day yesterday

Good morning, all.  I wrote this late last night, but Gavin woke up before I could publish...

Lou and I woke up so early to get to the studio for the radio interview on WFAN.  The audio podcast hasn't been posted to the website yet, but as soon as it is I will share the link here and on Ty's Facebook.  Bob Salter was a very easy going interview, he asked nice, open-ended questions and he allowed me to share my thoughts on why it is so important to raise pediatric cancer awareness.  He was also very sensitive to our current situation and he allowed me an open forum to talk about Ty and what an incredible little boy he was.  I was so happy to brag about him like that on-air.  The interview was a half-hour long so we covered a lot of ground.  I think it went well.  Thanks to all of you who listened and shared your positive reviews :) 


I told Bob that I would like to come back to the WFAN studio and he also promised to look into whether or not I can accompany him to a meeting attended by his radio colleagues. Hopefully I can book additional interviews on other channels.  I love radio, it was such a stress-free way to interview.  Lou and I both agreed that when interviewing for TV, half of your energy is spent worrying about how you look (am I blinking too much, am I sitting too stiff in this chair, should I brush the hair out of my eyes, or don't make the goofy face that gives you a double chin... don't do it!).  Radio was a piece of cake, and I loved the format of the interview.  Let's see if we can do more of those :) 

W-DORK!  It's was very, very early in the morning :)

Other than the morning interview, Lou and I had the rest of the day off in the city while Gavin stayed with Nana and Aunt Debi.  We decided to take a nap, indulge in a delicious breakfast, and then do some shopping together which is something we haven't done in ages!  The hotel didn't have hot water yet so I couldn't shower (but luckily the power was back on).  I felt a little sad and ugly walking around in the fancy stores around SoHo.  Then, it started again.  Everywhere I turned I saw something that Ty would have loved for me to buy him.  Lou and I were pointing them out to one another with a smile at first, but we also took turns choking on our words while trying to keep our grief under control.  We tell one another "I miss him so much" about 100 times a day.  We talk about him all the time.  Today we even discussed how we felt guilty doing something so normal, like shopping in the city without being weighed down with worry, because this is something we haven't had the freedom to do since Ty was sick.  Of course, we said over and over again that it is also a freedom we don't want.  We want Ty back more than anything in the world.  That fact made it hard to find the fun in our free time today, but we made a good effort.  I'm proud of us.

Then we stopped to visit with friends and maybe get a late lunch.  I saw little Eva and Theo for the first time since Ty passed away and I swear I was so happy to see them.  It didn't bother me at all.  What happened, though, is that I had to answer the question "where's Ty" from a totally innocent child that doesn't understand.  Poor Eva, she was just wondering where he was.  I hope I didn't frighten her when I burst into tears at the question and made a beeline back to the car.  I felt terrible, she didn't do anything wrong.  I need to think about how I might answer that kind of question from a little kid the next time.  Because if you asked me "where is Ty?" I would tell you "I don't know," and I would start to cry, but I can't do that to children so I need to figure something else out.  I tell Gavin that Ty is everywhere, and that he carries him in his heart - but I don't know what he really makes of all that.  At a minimum, I think it is confusing.  He has asked me, unprompted, "Mommy, is Ty's whole body in my heart?"  "Yes, Gavin."  "Even his two feet and his two legs are in my heart?" "Yes."

Today was difficult in so many ways.  When we got home I had a lot of cleaning to do because we finally got power back and the house was a mess.  I reorganized the candles and the flashlights in the pantry, which led me to stumble upon Ty's medicine box - just like we left it the day he died - syringes still filled with the medication we pre-filled for the week.  The "life-saving" medicine that we so adamantly administered every six hours.  It was hard to look at.  I was shackled to that thing for so long, needing to pull it down and put it back up on the shelf about six times a day.  Then, all of a sudden, I never needed it again.  I just slipped it right back onto the shelf for another time.

Then I found some of the kids' artwork on the floor because the bulletin board fell.  There were things that were buried under things that date back almost a year.  Some that represented Ty's healthiest days at preschool, others were some projects I did with him while he was at his sickest back in March to pass time in the hospital.  Seeing those things opened the floodgates to so many memories that I just couldn't think about for too long or I would fall into a hole of grief.  The silver lining came when we looked at the mail.  The Target Toy Book came in, and that was always the best one.  Ty had been looking at the 2011 book from Target this entire year, in fact I remember thumbing through it with him for the umpteenth time just a few weeks ago.  Well, look at the cover on the 2012 book.  Do you see it?!?  Mely pointed this out to me immediately.  If you look at it the right way, it is easier to read the word "Ty's" right there in huge letters, than the word "Toys."  Oh how I wanted to run over and show him how cool that is.  It would have been a big huge smile of the day.  It made me smile, too.


This would have been Ty's favorite toy book of 2012

Ty used to have chapped lips all the time because of his medication, and he loved chapstick even as a baby. I keep finding his chapsticks all over the place. I carry them around with me, I keep one next to my bed (where it always was for him), I put them to my lips and I wear his chapstick all day long. Every time I put it on I think, "this was against his lips, too." It helps me feel closer to him, but at the same time I worry that I am rubbing off the last layer that has any part of Ty left over. It's so strange. I just want to hold onto him so badly. Now that I see it in writing it sounds so desperate, but it comforts me and that's all I can say.

Missing that smile so very much

Saturday, November 3, 2012

We're back online! Hurricane Sandy and Halloween

As you probably guessed, we have been out of power and internet for the week.  We just got everything back.  But, please don’t worry about us with regard to the storm. We fared just fine.

Our beloved Long Beach, however, is devastated and that is a fact that has been very hard for us to swallow this week.  Long Beach was Ty’s home.  His favorite place.  I can’t tell you how many times Ty used to tell me, out of the blue, “Mommy, I memba the old how (“house,” in Ty speak).  I wub the old how.”  It was where he lived his life before cancer and it is where we all made the best friends imaginable.  Today, at a minimum, those friends’ basements are filled to the brim with water, their cars covered in heaps of sand, their entire homes are being prepared to be gutted and rebuilt (if the house is even fixable after all the flooding and destruction).  It breaks our hearts.  So many people we love are homeless and it is going to be a very long time before many of them can move back in. 
Lou went out to Long Beach on Halloween and again yesterday to bring heaps of supplies and help with the clean-up, but there is still so much more to do.   We are heartbroken, and I worry that Ty is weeping buckets over all of this.  I wish I was there to hold him and to tell him that his favorite place will be okay again.  I want him to know that his Sissy and Colleen, who took such good care of him and loved him so much, are going to get a great new house.  But, when I try to tell him these things outloud, I feel like I am just talking to the air.  That makes me so sad.  I can’t have a conversation with my son anymore.  I would give anything just to talk to him again.  To hear his voice.  To understand, even a little bit, what he is feeling. 

SuperTy doing what he did best.  Chillin at the beach.

The day of the storm, before it began, there was an eerie silence outside my home with the exception of the sad, panicked cry coming from one lonely bird.  I started crying and telling Lou that the bird was frantically looking for his Mommy.  It was flying between the two trees in front of my house, back and forth, calling out over and over again.  It tortured me.  It finally flew to a branch right outside my window so I could get a glimpse of the bird, and wouldn’t you know it was a beautiful bluejay?  Ty’s favorite color. The crazy in me actually thought I could catch the bird and keep him safe from the storm, but by the time I got outside it was gone.  I just wanted so desperately to comfort the bluejay.  As if I could whisper in his ear, “I know how you feel. We'll be okay? Right?”  Well, the bird was certainly right to panic.  That storm was pure evil.    I pray for everyone affected.

Halloween this year was certainly one that I suffered through.  I didn’t enjoy one second of Halloween.  But, I am very proud of myself because I didn’t let Gavin know, and I put on a great show for Ty.  I gave out all of his candy with a smile.  A few weeks ago he picked out eyeball lollipops, fruity insect chews, gummy earthworms, booger gum and bags of rainbow “slugs” to give away and when I ran out of those things, I gave out pixie sticks paired with chocolate truffles.  I was true to my word.  We will always give out great candy on Halloween, because Ty wouldn’t have it any other way.  I know a lot of friends and neighbors went out of their way to come down my sad, dark block in honor of Ty on Halloween and I want to thank you for coming all this way to “trick or treat.”  Please come back every year:)  

I didn’t get a single picture of Gavin, I feel terrible about that. But he was dressed like Thor and he was allowed to trick or treat with Ty’s Thor Hammer, which was the greatest part of his day.  In May, Mely and I took Ty and Gavin to the mall – the fancy mall with the Disney store – and I let them each buy one thing from there.  Gavin was still completely obsessed with Toy Story at the time, so naturally he chose another Buzz Lightyear.  Ty was totally disabled, but he still chose this huge Thor hammer that makes thundering sounds when you swing it and shoots out a foam bullet.  I got dozens of smiles from Ty reenacting Thor with that hammer and helping him push the buttons to launch the bullets.  It was a treat for Gavin to use the hammer and he was telling everyone about it while going house to house, which made me so proud. 

Forget the fact that this is a holiday that focuses on candy (Ty’s favorite thing).  What made Halloween extra depressing was reflecting on the fact that last year Ty was at his absolute best since his diagnosis.  He was practically standing independently.  He was getting so strong.  He was cancer free for four months and tolerating his daily treatments very well.  Ty decided to be Iron Man because his cousin James always used to tell Ty he was most like Ironman (because Ty has so much hardware inside to keep him alive, just like Tony Stark).  It makes me realize just how much went wrong for him after this.  Actually, it was after Thanksgiving.  Everything began to go downhill from there, but I’ll recap that whole story another time.


These days, Lou and I walk around the house with a very strong face on. We have talked about the fact that our strength may come from our lack of acceptance.  We are both still looking for Ty all the time.  We walk into the den and expect to see him on the couch.  We enter the house and expect to hear his voice and his laughter filling the hallways.   It’s as if we are just missing him and waiting for him to come home from a long trip away.  I can’t wait to see him again.  This life of mine is already beginning to feel long and dragged out.  The only thing I fear is Gavin getting sick.  Pediatric cancer is and forever will be my greatest fear.  My biggest enemy.  

Lou and I were talking about our future the other night.  A sort of, “what do we do now,” conversation, and Lou started crying.  “I know what I want, but I can’t have it!  What I want are my two boys, my sons, who were a perfect 18 months apart and who were going to be the best of friends.  That’s ALL I WANT!”  And all I can do is agree with him.  We used to have it all and we didn’t even know it.   What more do you need that this adorable duo?



I didn’t realize just how much maintaining this journal has helped me survive until I was offline for a week.  Instead of writing, I allowed all of the things that happened over the course of the week weigh on me.  I am in physical pain because my stress has reached a high point.  I was literally freaking out on Lou today because I feel so overwhelmed and all I want to do is get some alone time in front of the computer!!  As always, he gave me just that (along with a glass of champagne and a snack).  I have a radio interview tomorrow morning on WFAN so I have to cut this short to prepare.  If you are awake at 6AM on Sunday (insert sarcastic laugh) please tune in to 660AM.  I will be using this interview as another vehicle to spread awareness for childhood cancer.  Although my pain is still so new and so raw, this is the stuff that keeps me strong.  Getting Ty’s story out there.  Raising money for the cause.  That is all that matters to me now.  It used to be keeping Ty alive, but now my focus needs to be saving the next Ty Louis Campbell.  I need to use my oh so sad free time to fight for the next kid.  Thank you all, so much, for your continued support and encouragement.  You have all been so amazing.