Sunday, December 30, 2012

Missing my baggage

I was the first to fall asleep tonight, yet here I am, writing, trying to soothe me back to sleep by getting some thoughts on virtual paper instead of leaving them all swimming around up in this crazy head.

Lou always used to put Ty to bed.  Even before he got sick, that was his alone time with Ty after work and it was great for me so I could do the dishes, straighten up and care for baby Ga-Ga.  Since Ty passed away, he has been putting Gavin to bed and I love it.  I'm glad they have that time, and I'm glad for the peace and quiet I have during that time, too.  The only bad think is that Lou falls asleep in Gavin's bed almost every night.  When I try to wake him he is so disoriented he often goes straight to bed.  Tonight I had to put Gavin to bed while Lou was out dealing with all this snow, and I did the same thing.  He found me snoozing in the bunk bed at 9:30PM and it was glorious.  I told him I wanted to go straight to bed, but decided to wait for him for 30 minutes or so so he could join me. 

Lou was looking at a photo book of Ty.  He started crying before we even went up to bed.  Then I started telling him about how much cleaning and organizing I accomplished today in order to collect items for the charity drive at Mizzentop Day school (proceeds benefit Ty's foundation, see www.facebook.com/thelittlefighter).  I have nine contractor bags filled with clothes, toys and household items! Anyway, that resulted in both of us crying over how hard it is to go into Ty's "secret game closet" and get rid of some of his games... or his trunk... or his closet... and I did it all today.  The hardest giveaway is the double stroller that we used in Long Beach.  It's bleached by the sun and squeaky from the salt water but still works well.  It represents the best times of our lives, but we don't need it anymore because the best times of our lives are behind us.  How sad is that?  Lou emptied out the compartments (wipes, diapers, extra shoes, old juice boxes, oh... and the ever-present puke bucket).  Sadly, we are going to get rid of it. 

We went up to bed, my eyes were so heavy, but laying there I just couldn't stop my mind from racing.  This is what happens!  I was thinking about all of the littlest cancer victims like Tanner and Ronan and Ty.  I was thinking about how amazing Grace is, and how I wished she and Ty became friends like I imagined when we all first met (Grace is kicking butt, go Grace!).  I was thinking about Mighty Mikey and his family - I hope Christmas in their new home was a happy one despite all that Hurricane Sandy took away from them.  Most of all, I was thinking about Ty and how all I want to do is just talk to him.  I want to hear his voice.  I want him to hear me ask, "how are you?" and I want him to tell me that he is "Amazing!  Having so much fun!  So happy!" 

"Do you see me, Ty?"  I want him to answer me.  "Are you okay without me?  Who is with you, who are your friends?"  I want to know all about everything.  He is my son.  If he were here I would know where he was every second, and it is so hard to come to terms with simply not knowing exactly what's going on or how it all works or where - exactly - is he.  I have unwavering faith, but that can't stop me from wanting to hear his voice and have a conversation with him.  I want to feel his warm body in my arms.  So much so, that I went and carried Gavin back into my bed to see if that would help me sleep, but it didn't work.  I remembered carrying Ty like that - but he was so much lighter!   Gavin is a moose.  I went and got him because he was sitting up and crying in his sleep.  I asked him gently "what's wrong? why are you crying?" and he answered "because I love to dress up like...." and with that he went back down and was fast asleep.  I'm pretty sure I could finish that sentence.... Spiderman.  Wow.  He even dreams about superheroes.

Thursday I dropped off our beloved Mely at the airport.  I was gone all day.  I wanted to be with her every step of the way and I'm so glad I was.  I felt like I was saying goodbye to my younger sister, and that her whole life was about to change.  I don't know where it's going, but she is at a point in her life, 23 years old, where big decisions will be made and her course in life will begin to take shape.  I wish for her a life filled with the greatest love and the greatest fortune.  She was a true blessing to our family, an angel from heaven, and I just know that Ty will make sure she is taken care of.  She sacrificed so much for my family and she loved my children like I love them.  I am happy and excited for her to grab hold of her life and move forward now.  She will do great things. 

But, of course, that leaves me, Lou and Gavin even more alone.  My house is even more empty.  When I was walking back to my car at the airport, tears in my eyes (of course) I couldn't shake this feeling like I forgot something.  I kept checking and thinking that maybe Mely had taken one of my bags on accident or something.  Then I realized that it was just that "empty arms" feeling that I have to get accustomed to.  I miss my baggage.  Carrying Ty around in my arms with Mely always over my shoulder.  Now who will harass me and tease me and make me do silly things all the time?  Gavin has two pairs of very big shoes to fill.  One gift that she left me (among many) is a file full of new photos of Ty and Gavin.  YAY!!!!  Best present ever. 

Here are a couple from the night we went on the "Polar Express" train ride out of Essex CT last year.  Ty LOVED it.  My happy boy, just look at those smiles.  The holidays last year were truly the best. 


Wednesday, December 26, 2012

Christmas is over - now I can exhale

Not that today feels much better than yesterday, but I do admit I am happy that Christmas is over.  I don't think it can possibly get easier as the years go by.  How can I do anything but think of Ty the entire day?  When it is a day filled with presents, candy, cake and Santa Clause.  All of his favorite things in the entire world.  Christmas became magical again the first time we had a baby of our own to celebrate with, and now that baby is gone.  He was our greatest gift.  Never would we have imagined he would leave us so soon.  Or that he would suffer so much in his short life.  I keep thinking about that first Christmas with him.  We were on top of the world.  Nothing could be better.  We were just so in love and so happy.  I miss him more than words can possibly explain.  I love him greater than any other love.

I do believe that Gavin, on the other hand, had a wonderful Christmas and that's really all that matters.  Now, everything is for him.  It was too good, I think, because he is still asking for more presents.   He told me at bedtime that he hears Batman on the roof.  He told me that Batman borrowed Santa's toy sled to deliver presents tonight.  I hope he isn't too disappointed when Batman doesn't leave him with a boatload of gifts under the tree tonight :)


The Big Wheels was a big hit, but we have had too much snow for Gavin to test drive it outside.  We told him that Ty picked out the Big Wheels and I think we should do that every year, so he always knows Ty is thinking of him.  Ty's empty stocking is hanging in front of me as I write.  It still seems so surreal.  I was looking through some of the photos from yesterday and came across one of Gavin sitting on the floor and I thought it was Ty for a moment.  It's just so painful.  Lou did buy Ty a new robot that is sitting on the mantel with a ribbon wrapped around it, though.  I'm glad.  It feels less like he wasn't "left out" this way.  I didn't see or feel much of Ty over the past couple of days, which made Christmas especially hard.  But I do like to think he had something to do with the snow.  It started on Christmas eve, just before Gavin was off to bed, and we woke up to about two inches on the ground.  It was so exciting for him.  Thank you, Ty. 

Of course, Christmas was and still is beyond emotional for Lou and I.  It is gut wrenching.  After putting the presents out under the tree on Christmas Eve I cried so hard and so loud I was afraid I would wake up Gavin.  It was one of my worst nights ever.  My head/face was so swollen from crying I had to sleep on three pillows because of my headache.  I was so nauseous I had to take some of Ty's anti-nausea medication from when he was on chemo.  I was a complete train wreck. 

Christmas morning was okay.  Presents were almost fun despite the bleeding hole in my heart, and we all sat down in front of the TV to watch our videos from last year which was such a bittersweet pill to swallow.  I absolutely loved seeing Ty on the big screen like that and making sure he was such a big part of Christmas, but it was so hard to watch at the same time.  I think hearing his voice is what pains me the most.  I yearn for that sound like you can't even imagine. 

I didn't cry much until the end of the day, though.  Sitting at the kitchen table where I grew up and talking with my mom.  I couldn't hold back the tears any longer, but I was good... I didn't let my crying get out of hand.  Instead we all took a sleeping pill and called it a day. 

Ty with his favorite present last year, his robot

I enjoyed giving gifts this year.  We gave presents adorned with angels and pictures of Ty.  It felt good to be so confident that our presents would be cherished by all of our family for years to come.  We were all missing Ty, even my youngest of nieces and nephews, and I am glad that we all got together and enjoyed one another over the past couple of days because that's what the holidays are all about. 

I made the mistake of telling Gavin that Ty was enjoying the biggest birthday party for Jesus in heaven this year.  He always wants to go there to see his brother because he misses him and it sounds like such fun!  It's hard to make it sound like a beautiful, safe place for Ty while helping Gavin to understand that we can't visit him there.  It's just not fair that we even have to have these conversations.  My poor baby.  He should have his brother and it's as simple as that.  It's heartbreaking and wrong and I hope some day we can find a cure for these children.  We have ton because this has to stop.  No child should have to go through what Ty went through. 

Missing you, Ty, today and every single second of every single day. 

Sunday, December 23, 2012

Christmas and the Crazy Lady

I am a crazy lady.  I really am. One of the childhood cancer statistics that especially rings true is the one about the parents... 51% of moms and 40% of dads suffer acute stress disorder within the first two weeks of a cancer diagnosis.  Almost two and a half years later, my stress disorder and emotional instability is far from acute.  It is chronic.

So I have been calling myself "the crazy lady" for a long time now, and today I finally realized that I really, truly am nuts.  Sometimes all I want is to be alone, but every single time I am I go off the deep end.  I am almost embarrassed to retell my story of the day, but at this point why hold anything back?

We had an awesome morning.  Gavin slept late (which means we all slept late) and we played in our PJ's until after noon.  The only tears that escaped were over breakfast, when Gavin announced, completely unprompted, "I miss Ty."  I choked a bit when I answered, "me, too."  Overall, we were having fun and making the most of the lazy day.  Later, Lou decided to take Gavin to Jumpin' Jakes so he could have some fun with other kids.  I was happy to have some time alone so I could wrap the rest of the Christmas presents because there's nothing worse for a person with a stress disorder to have something like that hanging over her head.  My mental clock was already ticking louder and I could hear the birdie in my head saying "Cuckoo... Cuckoo... Cuckoooo".  They left, I got to work. 

I was doing really well for a while, but I started getting totally distracted by the quiet.  I needed to turn on some music and as soon as I hit the switch it was "Santa Clause is Coming to Town."  For a split second the sound of Christmas music put a bounce in my step, until I looked over to our empty couch and doubled over in tears.  I cried for an eternity.  I couldn't stop thinking about Ty and how much he loves Christmas.  How special it was last year and how certain I was that he would be with us for many, many more.  How he loved to sing, even though his speech was slurred and his timing was slow - that never stopped him from singing as loud as he could.  I was thinking about how much he would laugh whenever I did a goofy dance for him, which was all the time.  This is where the crazy comes in... during one especially cheery Christmas tune I got up off the floor and started dancing for Ty.  In front of the empty couch.  Trying to hear his laughter or catch a glimpse of his smiling face in the corner of my eye.  It didn't work and I felt like an idiot, but I bet he was watching and laughing at me even if I couldn't hear him or feel him.  How could he not, you should see how ridiculous I looked. 

This picture of Ty was taken for our Christmas card last year.  I didn't use it because Gavin jumped off the bench leaving Ty alone, but the photographer was kind enough to fill in some hair where he was still bald above the ears and it looks great.  His hair is thin, he is so skinny, he has a bruise on his arm from bloodwork that morning and he can't stand on his own, but there is no denying that he was a happy boy despite it all.  His smile is the most beautiful smile I have ever seen.  It moves mountains.



I can't sign off without sharing a sign from Ty, so here is one of many recent signs.  Mely and I went to the office the other day to get some work done for the foundation.  She walked into the room to catch the end of a Mumford and Sons song and she said, "this song always makes me think of Ty."  Of course, I was thinking the exact same thing.  The next song to play immediately after was Hey I just met you; and this is crazy; so here's my number; call me maybe... Mely and I couldn't believe it.  She taught Ty to sing that song over the summer and he used to think it was so, so funny.  I would make pretend it was driving me crazy, that I couldn't stand to hear them sing for another second, so he would only laugh and try to sing it even louder - of course.  They sang it duet style, where Mely sang most of it, and would pass the "mic" over to Ty for certain words.  It was so fitting that we heard it on Pandora at that moment when both of us were swimming in memories of Ty, because I don't think we heard that song once since he passed away.  He is so sweet to send us such a fun little sign. 

So, of course, Christmas is just so hard. But we are doing it, we are enjoying bits and pieces of it while the other parts hurt more than anything else. We are honoring and remembering Ty in every way.  We have received beautiful ornaments that adorn our tree with his presence and his beauty (thank you).  We are missing him every second of every day. To add to our sadness, Mely will be leaving for home on Thursday after living with us for more than two years.  I keep promising her that even though we won't be with her physically, we will talk all the time and she is lucky because Ty can and will go with her everywhere :) 

Friday, December 21, 2012

Begging for a do-over

The moment Ty was born, I experienced the biggest crush I ever had in my life - times infinity.  And that pure and giddy love never faded or became routine.  He always amazed me and continues to do so.  I was in awe just watching his every move (or his motionless, slightly pursed lips when he slept).  When I returned to work, there was nothing I enjoyed more than picking him up from Sissy's at the end of the day.  Nothing.  He always made everything better, no matter what.  He was everything happy and sunny and perfect.

When Gavin was born, I didn't think I had room in my heart to love him as much, but instead of squeezing him in, my heart simply doubled in size.  And it continued to grow with every interaction between them.  I was so in love with them both, and so happy they had each other.  Gavin and Ty completed me, and they completed each other.  Goofballs.  Best friends forever.


I feel like Gavin is so alone now.  He needs someone to dress up and run around the house with him besides me.  I try, but I don't last that long and I'm not as fun as his brother would be.  I mean, just look at him.  It's adorable, but he needs more distraction or I'm afraid he will obsess over Spiderman forever :)


I went out last night and left Lou with Gavin for a "boy's night."  It was the cutest watching how excited Gavin was before I left!  He couldn't wait to put the train together under the Christmas tree and watch movies with Daddy.  I was happy they were going to have that time together.  It was also good for me to escape for a little while.  I am proud of us for giving Gavin Christmas even though Lou and I would rather just skip it this year.  He is the age when the switch turns on and the magic of Christmas lights up his eyes.  We need to give that to him, no matter how much this holiday is hurting us.  We just put on a happy face and go through the motions and find joy and comfort in our perfect tree that Ty picked for us. 

Whenever Gavin sees a baby on TV or out somewhere, he loves to show me and tell me how much he loves them.  He said something similar to Lou last night that prompted him to ask, "would you like a baby brother or sister?" to which Gavin answered.  "Yes.  But.  I already have a brother."  Lou said, "I know, but Ty is in heaven now and we won't get to see him for a really, really long time."  Gavin thought about it for a second and said, "Okay.  Then I want a little brother named Ty."  Makes me cry.  Lou and I are aching.  We are grieving.  We aren't planning any babies - just want to answer that question before you ask.  We do talk about it, though (we always have) and that's why he mentioned it to Gavin.  Just to see his reaction.

I was looking through the camera tonight, and saw this picture of Gavin looking at a ladybug on the ceiling.  I asked Mely about it, and she said the ladybug appeared one day while we were away so she snapped a photo for us.  Today I was thinking of Ty as I was carrying packages into the Post Office.  I was specifically thinking how if this was 3 months ago, I wouldn't have been able to carry Ty and these packages at the same time.  Reflecting on the physical struggle we both endured made me feel SO GUILTY that I was just zipping around town now, getting things done without him.  Of course, right as I opened the door I saw a very random printed photo of a ladybug posted to the window of the post office.  Never noticed it before and I felt better immediately. Thank you, Ty.  You really are with me everywhere I go. 

I know.  It's almost impossible to see, but I promise it's there :)

My cousin recently sent me a picture of me and Ty in the pool together from back in August.  Just three weeks or so before hospice.  I was so happy because we don't have any other pictures of him in the pool since 2010 and I think he is looking at some angels in this picture, don't you?  He's not looking at me, he sees something in the distance.  I can't flip this photo for some reason, so you'll have to tilt your head.  Sorry :)



I had a complete and total breakdown on my way home last night.  As always, I save my crying for the car.  I instinctively looked for Ty in the back seat and caught a glimpse of his puke bucket that I've left in there just in case I wake up to find this is all just a nightmare.  I lost it completely.  I was crying and talking to Ty, telling him how much I miss him and love him.  Then I started talking to God and just begging, begging, begging and hitting my steering wheel.  Begging turned into screaming.  "Please give me a do-over?  I want it back!  I want my life back!  I want him back!  I know you won't, I know he's not coming back, and I know he is safe and he is okay but I still want him back!"  Over and over again I asked God to just take back the last two years and put me in my perfect, simple life in July 2010.  Then we could move forward from there again, and Ty will never get cancer.  Or we could just live in July 2010 forever - I would be happy for time to stand still.  I just wished over and over again for something I know I can't have.  I was upset (understatement).  I told God how hard I was trying.  How much I let go and trust in Him but that it is really, really hard to maintain nowadays.  I told God that I trust in Him still, that I was sorry and ashamed for begging, but I'm human and I just love Ty so much, and I can't stop myself from wanting him back.  It's simply impossible not to want.  Not to wish things turned out differently.  He understands.  I'm allowed to have these breakdowns.  These outbursts are my therapy.  I don't walk away with any answers, but I do feel calm and more at peace afterward.  I believe my God "gets me" and takes no offence.

I think about Ty every second of every day.  My crying is usually triggered by the memories of all his pain and suffering.  Every time I think back to any time while he was in treatement, there was always some sort of tragedy tacked onto every good memory.  The vacation at the beach interrupted by emergency shunt surgery.  Christmas last year, interrupted by a brain bleed that took out the left side of his body.  Our Make a Wish trip to Disney included morphine every four hours and emergency trips to the pharmacy for additional pain medicine.  Poor Ty just couldn't catch a break, but boy did he beat the odds despite getting knocked down every step of the way.  Like I always say... we call him SuperTy for a reason. 

I threw away Ty's puke bucket from the car tonight.  I was feeling stong, it was a big step, and it turned out fine.  In the bucket, which also served as back seat storage, I found a thermometer, three boxes of tissues, a belly tube, a syringe, an unopened can of Ty's daily shake, a little superhero toy and two extra diapers for Ty (even though he was a big boy and totally trained, he wore them to feel safe just in case).  I actually hesitated to throw out the syringe because I thought "oh, this is a good one and these are hard to come by," until I realized I will never need to use it again.  Big exhale.  No tears.  I did it and that's that. 

SuperTy was featured next to SuperMax in a recent newsletter for St. Baldrick's - a tremendous foundation also dedicated to childhood cancer research.  The largest of its kind and we are big supporters.  To quote the newsletter, they "both love rockin' crazy hair styles and super heroes who take down the bad guys. They were both diagnosed with childhood brain tumors before the age of 5, and couldn’t walk, talk, or sit up without support."  The difference is that Ty lost his life and Max is still fighting for his.  I can never stress how important research funding is and will continue to be until these kids can be 100% saved.  We raced against the clock with Ty for two years, but research wasn't fast enough and the therapies weren't good enough.  There are amazing things on the horizon but there is also so much work to be done.  I just want to thank you all for supporting the cause and being such wonderful believers in the difference that all of us cancer moms are making.  Max's Mom is one of the Baldrick's team "46 Mommas Shave for the Brave" and she sells amazing hats through the MaxLove project.  I just received one in the mail today and I love it (thank you Donna!).  We are banding together, us Moms, and just wait until you see what we can do!  PS - yes, that is a  cheesy lo-fi instagram filter to make me look blurry. It was a long day and I otherwise felt haggard :)




Wednesday, December 19, 2012

Extreme Home (office) Makeover

In one of the stars
I shall be living
In one of them
I shall be laughing
And so it will be
as if all the stars
were laughing
when you look
at the sky at night
- The Little Prince

It goes without saying that the tragedy in Newtown, CT pains me beyond comprehension. I really can't talk much about it because there are no words, but I felt I had to acknowledge it since I was away when it happened and very disconnected to the world and all that was going on.  In my head, I try to imagine Ty among those children in heaven -- dancing, playing and laughing so loud.  Still, it doesn't bring much comfort, nor does it help me understand the tragedy of any senseless loss. 

I've seen a lot of similar posts on Facebook today, and wanted to share this one in particular. 

 

Let’s tip the scale of good and evil in our world.
Like many people, I am having so much trouble getting beyond this horrific tragedy.
 What has occurred cannot be changed, but I can promise myself that these beautiful children will not be forgotten. They have made a lasting impact on my life. In the last few days I have hugged more, shown much gratitude and felt so much pain and love. Patience with my children has been abundant and my to-do list has been trivial. I know I am not alone in this.

Thank you beautiful angels for inspiring us to do better.

Many people believe change is needed by amending gun laws or improving health accessibility. I feel the need to do something immediate and within my own control.

 I have set 26 intentional good deeds in dedication of: Charlotte, Daniel, Olivia, Josephine, Ana, Dylan, Madeleine, Catherine, Chase, Jesse, James, Grace, Emilie, Jack, Noah, Caroline, Jessica, Avielle, Benjamin, Allison, Rachel, Dawn, Anne, Lauren, Mary and Victoria. They are simple acts of kindness done in their honor. I made a list of things that are within my range of resources. Each one is written on a star and they will hang on my wall as they are fulfilled. I am including my children in as many of these acts as possible. Among these, we will be making something to bring to our local nursing home, picking up trash at the beach or park and I will be doing several free hoop classes for children’s non-profit orgs. The kids came up with a lot of sweet things to do.

I invite you to join me if you wish. Love more, give more and be grateful every day. ~Gina

This is the good that comes out of tragedy. Just as I have seen when Ty got sick, and again when Ty died.  People are inherently good and kind. 

Speaking of which, you would not believe the amazing gift I came back to on Monday.  MY OFFICE!  The Ty Louis Campbell Foundation is almost ready to roll!  An incredible crew of volunteers arrived on Saturday and worked their butts off to spackle, prime, paint, clean, rip up carpet and decorate!!  The space looks absolutely incredible.  I had NO IDEA that they had such plans and I was simply blown away.  To this day I still can't figure out how they did it all in one day!  One of the greatest gifts was the photo album they left me that documented the entire process.  I swear, it was like my own Extreme Home (office) Makeover.  They thought of everything.  All I need now is some carpet -- the guy came today to measure -- and a few more furniture items -- but nothing that will hold us back from getting to work.  After the New Year, that office will be buzzing :)  Thanks to all of you who have contacted me to help.  I promise, I will be in touch! 

Every item in that office, along with the labor that went into it, has all been donated.  The carpets will also be donated by a local provider, as well.  I am overwhelmed with gratitude for the generosity and love that we have been flooded with. 

The office has three rooms.  A blue room for Ty, a green for Gavin, and a large yellow room with a kitchenette where we will often work in teams.   There were tons of people there to help, including a bunch of kids, and I am simply blown away.  They didn't miss a single detail.  Ty was everywhere.  So were ladybugs and messages of hope.  The space is beautiful. 







 
 
This is the definition of a labor of love.  Thank you so much to all of the incredible volunteers who helped pull the space together and make it feel like home.  There's no place I would rather be :)
 



Sunday, December 16, 2012

It's a Little Closer to Heaven Here

Lou and I have spent the last four days in one of the most beautiful places in the world.  You need to breathe the air and see the mountains out your window to understand the magnitude of the beauty here.  I'm happy we did this.  Lou and I really needed to get away, and this was the perfect place.  That's not me or Lou in this pictures and I didn't take it, either.  I am way too busy worrying about falling when I am snowboarding:) I just thought this picture from Whistler really shows how amazing it is out there on this mountain. 




Of course, we are thinking of Ty every second. When we arrived here I was thinking about how hard it would have been for Ty this year because he was so disabled compared to our trip to the mountain in Vermont last year. I was flooded with memories of our family trip to Okemo less than a year ago. Some of you might remember that he was sitting upright and we even brought him snowtubing. The photo of him, his famous one on top of this website, was taken during that trip.  He was sitting in the snow and throwing a snowball all by himself.

When we first arrived in Whistler we took a walk through the village and I thought, "I wish Ty could see this. He would have loved it. But, the poor baby, we would never have been able to take him here anyway because it would be impossible to get around in the snow with a wheelchair or stroller or anything." Then I watched a woman put her toddler on a round plastic sled and pull him around with a rope. I realized that we totally would have taken Ty here. We could have done the same with a long tobaggan and propped it up with pillows and blankies. He would have loved it. One thing I’m really proud of is that we tried to take Ty everywhere. We never wanted to deprive him of experiencing life and beauty despite his handicap.  In his five years he did so much.  He smiled so easily and enjoyed life despite all he endured.

I know he is here with us in our hearts, riding on the mountains with us and taking it all in, but I would be lying if I didn't admit that I feel his absence way more than his presence this entire time. Every step I take I am thinking of him, wishing he was here and feeling the void in my heart. It is so brutally painful.

I opened my toiletry bag when we got here and found my toothbrush, Gavin's and Ty's. I took mine out and put it on the sink area so I wouldn't have to open the bag and see Ty's toothbrush again for the rest of the trip. Today, as we were packing up, I was reminded it was there. I felt strong, so I took it out and looked at the bristles. I saw some scrapes in the plastic and relished in knowing that his teeth made those marks. That it was in his mouth. How sad is it that all I have left of him is a used toothbrush, and that I found painful joy in staring at it for who knows how long. 

I ask Ty to come to me in my dreams all the time but I haven’t had a good dream about him, yet.  Instead I am tortured with dreams about losing him, about his cremation, about him in a hospital bed.  The other night, while on this trip, it was even worse.  You might want to skip this paragraph if you don’t want to know because it is morbid. I woke up and told Lou about it and we just cried and cried.  In my dream Nana, Gavin and I were in the playroom at Nana’s house (Ty loved that room) and we were all sitting on the floor playing with Ty -- but it was his dead body.  I was laughing and making jokes and waving his arms and pretending to open his eyes.  We seemed to be completely oblivious to the fact that he was dead.  I never woke up feeling so sick.  I can’t wait until I see him healthy and happy enjoying his new life instead of all these crazy, hurtful dreams I’ve been having.  My mind is playing some pretty mean tricks on me.

Here in the mountains, I can’t look out my window and ever deny that there is a wonderful, loving God that created all of this magic.  It is so beautiful it takes your breath away.  I included that picture above of the snowboarder in the clouds because that really is what it was like up there (except for the fact that I am not nearly as talented or graceful on a snowboard).  I kept imagining that I was playing in the same clouds the Ty plays in. 
 
Lou and I went out for dinner each night and I think we are starting to get more used to talking about Ty with strangers.  It feels really good to tell people about him and how amazing he is.  When we are asked whether or not we have any children, we don’t hesitate as much. When people are awkward because they don’t know what to say, we have learned to help them feel comfortable and not to worry about saying the wrong thing. People are so afraid of hurting us by saying the wrong thing, and I just say that we hurt so much already, nothing they say with good intentions could hurt us anymore than that.  Don’t be afraid to talk about him, we prefer to talk about him. 
 
I want to carry around business cards for the Foundation and bracelets so I can start leaving them everywhere we go.  So when we meet strangers and tell them about Ty they can go home and fall in love with him through his website.  All of these kids like Ty who fought so hard, they are finally giving a face to Childhood Cancer and making an impact.  I believe we are near a tipping point and big things are going to continue happening to raise awareness.  I don’t want to be part of the movement -- I would prefer to live in the bubble where I existed before Ty had cancer -- but I can’t ever go back there.  We are leaving for the airport soon and I am consumed with anxiety because (1) I can’t WAIT to see Gavin, and (2) I am dying to get back to the office and get back to work on the foundation.  I will be there first thing tomorrow morning, burning up my keyboard and organizing our databases.  Starting January, I will be calling on all volunteers to start hashing through the immense “to-do” list.  I am excited about all we can do in honor of Ty.  Thank you all so much. 
true love forever - december 2011

 

Tuesday, December 11, 2012

Wow. He really is with me

I never post twice in one day like this, but I'll never sleep if I don't share what just happened. 

I told you that my emotions are the worst when all is quiet.  Well, tonight everyone was off to bed but me... frantically wiping kitchen counters and straightening up the house so I can exhale feeling prepared before we leave first thing tomorrow morning.  Of course, thoughts of TY consumed my mind.  I just can't stop thinking about him, especially when I'm alone.  As I was spreading the mayo on Gavin's sandwich for school tomorrow I just impulsively said "Hi Ty," outloud.  That was followed by an awkward glance up for no reason at all.  Wouldn't you know who greeted me right at that very second?  A ladybug.  On my ceiling.  AGAIN.  In the middle of winter on a freezing cold night.  I climbed a chair to get a picture and she just crawled closer to me until she was practically looking right into my eyes.  I love that ladybug.  The signs I get from Ty are so incredible.  Thank God for them.  How else would I be able to cope? Isn't it beautiful?

This is undeniable proof as far as I'm concerned
I had to run out to my car for one last thing before going to bed, and when I looked up at the sky I was slapped in the face by the brightest of all stars - right there - winking at me.  Thank you Ty.  I do believe I will sleep well tonight.  Thinking of you every second.  Loving and missing you so much, but happy that tonight you were able to tell me you are safe and you are with us.  XOXOXO.  Giant hugs and kisses to you, Ty.  Love you super huge big much. 

PS - A special tree draped in nothing but candy. This was made especially for Ty by his Nana, with a shiny blue star on top.  Thank you so much, Nana.  I look at it constantly and think about how much Ty must love it. 

There will never be enough

Every day it's more and more real.  Ty is gone. 

Before this happened, Lou and I tried so hard to make sure we captured our memories.  We took so many pictures and so many videos.  I saved everything he ever drew, and when he couldn't draw I saved the stickers we did, or the other arts and crafts Ty helped me with as I pulled his arm over to the paper, or the beads, or whatever it was he wanted to make.  I saved his clothes, his toys, his favorite things and I look at them every day.  I keep the door open to Ty's bedroom and I am drawn to it every single time I walk down the hall.  I need to step inside and look around and just remember him and whisper to him and let him know I am thinking of him every single second.  But it's never enough.  We don't have enough pictures, enough videos, or enough anything because we simply don't have him anymore.  We are so sad all the time.  Just looking at this perfect hair - I want to bury my nose in it, run my finger down his soft cheek and kiss those lips over and over again. 

So sick and completely paralyzed, but Pop the Pirate is funny

We are still living though, Ty, and I think you would be proud of us.  Did you see Daddy and I in the city this weekend?  At the party with Gavin?  Christmas shopping?  We are trying so hard.  I hope you didn't see my crying every ten minutes on Sunday, that was my worst day in a long time. 

This weekend started out great.  One of the best in a long time, with the exception of my sad Sunday.  Friday night Lou and I prepared for our upcoming "vacation."  It sounds stupid to call it a vacation, but we are planning to get away for five days this week, and it is something we have been talking about since Ty was sent home on hospice.  A healing getaway, although I don't think there's anything that can heal us from this.  We are going to Vancouver/Whistler to go snowboarding.  I know, I know, it doesn't sound very relaxing.  But, we were both afraid that if we chose more of a serene, relaxing retreat that we would drown in cocktails by the water and fix our hangovers with a Bloody Mary.  Not that there's anything wrong with that when you're having fun and happy, but for us, that could be dangerous.  Instead we will be active the whole time and I think that will be very good for us.  That is how we have been surviving these almost two months anyway, by keeping very busy.  We will be getting home on Ty's two-month anniversary.  I can't even believe it. 

You asked to see him, here he is :)
Here is the doll we snuggle up to every night and morning.  Now that I'm looking at this picture on the screen, it is making me smile really big.  It's funny that we love this doll so much, but we really do.  We talk to him and kiss him and tuck him in nicely under the covers.  Oh boy.  We are crazy, but who cares.  Aren't we all?  A little bit at least?

Saturday was an incredible fundraiser for Ty hosted by Anthony's 151 Grill in Mahopac.  They had more than 100 prizes donated for the raffle and raised a ton of money.  There was a lot of adorable activities for the kids like face painting, gold hair extensions for pediatric cancer awareness, cartoon drawing from a true comic book artist and more.  There were so many kind and generous people there, some who traveled really long distances just to be there for us.  I met so many caring people and we were so humbled and so honored.  Thank you so much to all of the incredible volunteers, and to the Anthony family, for donating so much time and energy and pulling off such a wonderful event.  It is an awesome restaurant, too.  Everything was delicious!

After that, Lou and I were off to the city to have dinner with our friends Rocky and Kathleen from Dallas who were in NYC for a few days.  Kathleen and I have been talking for two years, she loves Ty so much, and I love her and her boys like family.  This was our first chance to get together in person and we were so excited we were practically talking over each other all night.  We laughed, we shared stories, we talked about Ty and our families and indulged in good wine and delicious food.  My favorite kind of night.  I barely even shed a tear and that alone is a gift from them :)  Thank you guys, we love you.  I really enjoyed myself.  We stayed overnight in the city because Lou and I had more meetings in the city on Sunday to discuss the foundation and some projects we hope for on the horizon.  We have so many big ideas, I get excited just thinking about it. 

It wasn't until the car ride home that I started to unravel.  I guess after such a good couple of days I was bound to fall apart sooner or later.  We had to go toy shopping for Gavin while he was still at Nana's house.  Christmas shopping was pure torture.  It can be painful on a Sunday in December for any normal person, but for someone who is doing it with a hangover for the first time since losing his or her child - forget about it.  Every toy was heartbreaking.  Every single thing I looked at was something that Ty would have loved.  There was candy packaged in such exciting ways I wanted to buy it for his stocking.  I heard his voice around every corner.  I watched the other children in shopping carts with such envy it was almost scary.  My head was throbbing.  I cried so much in the car every two minutes and all I wanted to do was go home.  But we didn't.  We put one foot in front of the other for Gavin and for Ty.  We bought the most beautiful wrapping paper and bows and gift bags so everything will look extra special under the tree this year.  That is what Ty would want.  I know that with all of my heart.  Even just two months ago, I talked about Christmas with Ty and he reminded me that Santa left footprints by the fireplace.  He ALWAYS talks about that.  It was so magical that morning when he saw that.  It wasn't the presents that he remembers most, it was Santa's footprints.  That is why Christmas is so awesome. 

There are days that go by where I don't cry all day long and it's not until I lay down at night, in all the quiet, that my memories come trickling in.  I most often remember his last breaths.  Over and over again I watch the love of my life die in my arms.  My face contorts and my eyes well up just writing that sentence because it is so painfully true.  My love for Ty is so big, I just can't believe he had to leave.  I am surrounded by his pictures and his beauty is just undeniable.  What a gorgeous gift he was.  He was so perfect in every way.  I wish I could see him running and laughing and playing.  Look at him here, after a long day at the beach.  I want him back.  Cancer just swept in and stole him from me while robbing this innocent baby boy of his childhood.  He was just the coolest kid.


Everyone asks me how Gavin is doing.  I think he's doing really, really well, but I also think the loss of his brother is taking more of a toll on him than we realize sometimes.  All day long he is happy.  He has fun.  He wants to play and play and play.  But I watch him by himself and it just feels so wrong.  He should be with his brother.  He needs his best friend to play with him and I am so mad that he doesn't have Ty anymore.  Even when Ty was so disabled, they played with one another. They teased each other.  They were very much a part of each other's lives, of course.  Gavin asked me the other day if Ty was an angel and when will he come back (along with a thousand other questions about Heaven and angels and God).  After I tried to answer him the best I could while trying to mask the quiver in my voice and hide the tears in my eyes he said, "But I want him to come back because I want him to be a person again.  He is my brother!"  All I could muster was "me too."  Then he shot me with an imaginary web and yelled "YOU BE LIZARD, I AM SPIDERMAN!"

CHALLENGE - where is Gavin in this picture?
See his little Spiderman face peeking out from behind the wall :)  I am grateful that he is so young.  For the rest of his life, I hope I can do a good job honoring and including Ty without making Gavin feel like it is too much, or like Ty was more loved.  It seems like it will be a tough balance, but Gavin is so young and so grounded that I think he will adjust well and continue to love his brother while enjoying the beauty of his own life and what's in store for him.  Here he is playing with a friend.  I can't believe he shared the Spiderman costume!  He is so much fun.  I am thankful for him every day.

 
I will be sure to bring my computer with me on our mini-getaway.  There is a lot of work to do for the foundation so I hope to use some of the time on the plane to finish up our new website and I'll be sure to let you all know how we're doing.  The foundation is going to be amazing.  Please keep those muddy puddles coming, too.  For everyone who volunteered, we will be assigning tasks after the holidays.  All hands on deck!  Thank you so much. 

Friday, December 7, 2012

Christmas is far from merry, but we're trying

"Sometimes seeing is believing. But sometimes the most real things in the world are the things we can't see." - Polar Express

Christmas sucks. I'm sorry. It's just so unbelievably hard. I love my tree, though. It's so breathtaking. Every time I look at it I am reminded that Ty wouldn't allow us to forget about Christmas. He picked this tree for us when we reluctantly visited the tree farm and half-heartedly cut down any old tree. It is simply magical how perfect it is. It's the biggest and best tree I have ever had in my entire life and as much as I wish Ty was here to see it, I also know with every ounce of my being that it is him who saw it first and chose it for us.  "Chrimpy" (that's how he said "Christmas") was Ty's favorite thing of all. Here is a really, really short video from last Christmas eve when Papa dressed up like Santa. Please look at Ty's initial reaction when he saw Santa. It is amazing. Priceless. Beautiful. I want it back.  This tiny video clip leaves me wanting so much more.  I want to jump right into it and be holding Ty again.  I could rewind that 1.5 seconds and watch it over and over and over again.

video


The hardest ornament to hang on the tree this year was the one of Goofy that we bought at Disney during Ty's Make A Wish trip in 2010. We were told he had six weeks to live, it was December and I asked him to pick out a special ornament for the tree so I could remember that moment always. Then we hung it together again in 2011! It was a real miracle that he was with us again last Christmas.  When I packed it up last year I put it in the box with the utmost certainty that he would be with us to hang that ornament every year after, too. I never had any doubt. When I pulled that ornament out this year I practically fell to the floor with grief. I cry and I wish with all my heart and soul that his miracle could have been 100%. Why couldn't he continue to teach everything all of the beautiful things he is teaching us and still be alive! Still bring us all a "smile of the day" every day? I'll never understand but I do try to remind myself of the bigger "life" that waits for me beyond this one, and it helps me to cope.

I also know this. Losing Ty is the greatest test of faith imaginable. It would certainly be easy to believe in God and believe in miracles if Ty did jump off that couch and land on two feet. If he survived cancer and debilitating brainstem trauma and went on to play college football. It would have been downright impossible to doubt God's existence after witnessing something that big. So maybe Ty's story is instead intended to help us find faith in the darkest of times and rely on that invisible truth to show us that there is so much more than the skin we live in. Our Christmas card last year read "Believe in Miracles" and I still do. Even more now. Because I believe that Ty is with still with me and that the time I had with him will always be my greatest gift, my miracle.  PS - I won't be sending Christmas cards this year, but I hope you all know that I wish you happiness. 


Gavin's reindeer in the background is funny



RAISING AWARENESS
Slowly but surely, Childhood Cancer Awareness is getting bigger and bigger.  Thanks to all of YOU!  The town of Pawling has allowed for a Gold Christmas tree to be put on display in the heart of town to honor two of our children who battled cancer.  Ty and Ryan McElroy.  Ryan was just days shy of his fifth birthday when he journeyed on from this life in 1998.  There is a statue of Ryan in town that we walked by just the other day and for the first time Gavin stopped to ask me who that boy was.  I told him "that's a little boy named Ryan and he is just like Ty.  He had cancer, too, and now he plays with Ty in heaven.  I bet they have a lot of fun together, don't you?"  "Yes," answered Gavin, "but Ty is my best friend because he is my brother."  Breaks my heart.

Here is a picture of the beautiful tree!  Thank you, Melissa Divitto, for making this happen.  It is such an honor.  We were in town tonight for the lighting of the big tree and our beautiful gold tree for childhood cancer awareness was SHINING BRIGHT!!



Tomorrow, the kind and beautiful Anthony Family will be opening the doors to their restaurant in Mahopac (151 Grill) for a TLC Foundation fundraiser.  If you are local, information about the event is posted here on Facebook.  We hope to see you there!  Then, next Saturday there will be a Zumba fundraiser event at the VFW in Carmel.  Information about the Zumba event is also posted to Facebook

Today I had another radio interview - this time with Bloomberg radio.  It will air in a couple of weeks and I will be sure to share a link. 

We had a tremendous response to the Muddy Puddles Project. THANK YOU!  For all those who emailed with interest in volunteering - you WILL be hearing from me soon :)  Thank you for sending me all of your muddy puddle stories!  Please keep them coming and tell your friends to do so, too.  Anything you can share about your children celebrating their childhood in honor of Ty would be wonderful.  And don't forget pictures!  Thank you all so much.  Your love and support is just incredible.  This is going to be BIG!!  All of these amazing things happening, this is what keeps me going.  Thank you all so much. 

Before signing off for the weekend - a fun photo of Gavin.  He goes everywhere like this - as some of you witnessed in town tonight!   Goodnight.  XOXO.

Thursday, December 6, 2012

Update and a bunch of "asks"

I've noticed so many new things that Gavin does around the house that used to be "Ty's things."  For example, he is dancing sometimes.  Gavin NEVER EVER danced.  And, when he does shake his booty a little bit he tends to lift his elbows and dip his head in a way that I have only seen one other person do it... Ty, of course.  It is so strange to see so much of Ty in Gavin all of a sudden.  They are two very different little boys, don't get me wrong, but just like Gavin adopted a love for superheroes as Ty was leaving this world, he has also taken on some of his physical traits and funny movements. I'm grateful for that.

The music in the car kills me.  I tried to tell Gavin that he can't watch a DVD during our 10-minute drive into school because it's ridiculous.  Stubborn boy instead insists that we listen to his kids music.  He wants to hear the CDs that I used to play for Ty religiously.  Sometimes I am happy to play some of Ty's favorites for him "Listen Gavin... this one gets really fast and silly! Ty used to LOVE IT when I sing it like this?" but other times I can barely stay on the road when the memories come flooding in.  On our way to school today I was so sad listening to the CD and then a slow song came on... "twinkle twinkle little star."  I immediately heard Ty's little voice singing from the back seat and at that exact moment, a gold leaf fluttered right before my face on the other side of the windsheild.  I often tell Ty "I see you in every star that winks at me, in every falling leaf before me."  He is taking care of me, isn't he?  I hope he isn't burdened by the need to watch out for me.  I just want him to enjoy and have fun, I don't ever want to imagine a look of worry on that precious face ever again. 

So everything is okay.  We are doing as good as could be expected.  Lou and I take turns crying, but it's always at night and it's never debilitating.  WE are very focused with work and with advocating for Ty's cause.  I hope to have a radio interview with Bloomberg next week and a few other exciting things in the works.  Which brings me to my "asks":

First, if you Twitter, can you please tweet for Ty?  Follow us @SuperTyCampbell and start tweeting to #Gaplove and #Superty.  The Gap is posting photos on their Times Square billboard and I want to get Ty up there.  The photo has to include a picture of an adult, though, so here is the "tweet" i created with our photo attached as a bitly.  Please tweet and retweet all you want :)  Thank you.  I'll post the photo of the billboard if we ever make it up there.  I just think it would be a cool way to honor Ty and potentially promote his story! Even if it only lasts 5 seconds :)

New pic w/mom. Love doesn't get bigger than this! , a 5yo cancer warrior whose legacy lives on.

My next ask is a big one.  It involves the Muddy Puddles Project. 
Let your kids jump in muddy puddles whenever they want.  Let them get wild with finger paints and glitter.  Soon they'll be all grown up and see the dirty clothes and wet shoes as nothing but a nuisance.  It's beautiful that children can find such joy in the simple things that we no longer appreciate as adults.

What is The Muddy Puddles Project?
The Muddy Puddles Project is a celebration of children and childhood.  It is a way of life.  A shift toward letting go of the everyday stress of being a grownup, and finding the fun in all things silly and ridiculous.  It embodies the act of kids being kids in honor of those who can’t. 
The Muddy Puddles Project was inspired by five-year old Ty Campbell.  A magnetic little boy who battled cancer for more than half his young life.  The treatment that he endured severely compromised his quality of life, just as it does for the majority of the brave children fighting cancer every day.  But it never stole his smile or dampened his spirit. 
When Ty lost his ability to walk, he found joy chasing his brother around the house by scooting across the floor on his behind.   When he lost the ability to manipulate his toys, he enjoyed looking through toy catalogs as his friends and family turned the pages for him.  When he could no longer eat some of his favorite foods, he found happiness in the simple sweetness from his favorite blue lollipops.  When he was stuck in the hospital for months on end, he loved to get pushed around in his wheelchair and get outside for a breath of fresh air – or watch the fish in the fish tank.  He never stopped smiling, even as more and more of his childhood was taken away from him. 

 
Ty often talked about jumping in muddy puddles.  It was the thing he wanted to do most when he got better.  That idea alone, the joy that might be found in the simple act of jumping in a muddy puddle, is a perfect demonstration of how incredibly beautiful childhood can be.  What it is supposed to be all about.  
Ty died on October 17, 2012 and he is finally free to jump in muddy puddles, ride his bike in the rain, dance on the rooftop, slide down rainbows and bounce among the clouds.
How can you be part of the project?
Simple.  Share your stories of how Ty has inspired you to have fun.  Send in your photos of your children getting totally messy and acting silly.  Give them piggy back rides to bed and let them have “one more story” before going to sleep.  If they want to use finger paints instead of crayons – let them.  So many of you have already done this around the time of Ty's passing and it was the greatest gift you could have given me. 

Now I am asking you to resend those photos and those stories with your permission to republish them on our Muddy Puddles website and present some of them in a book form as a sort of "Chicken Soup for the Soul" collection of kids celebrating being kids in honor of those who can't. 

As a minimum, we will collect your stories and display them on the Muddy Puddles website which is well underway.  We consider this celebration of childhood as a therapeutic reprieve for parents, and an opportunity for our kids to have more fun while they still appreciate what that means. 
PLEASE EMAIL OR RESEND TO A NEW EMAIL ADDESS SPECIFIC TO THIS REQUEST:
MuddyPuddleProject@gmail.com  If you don't want me using your kids names, just say so,  But please don't be shy in sharing the truth behind the photos and incorporating Ty's influence wherever possible.  We really hope to turn this collection into something tangible some day. 


The Muddy Puddles Project “MESS DAY”
The muddy puddles project “MESS DAY” is an event where kids can get downright messy.  We will have mud for jumping and wrestling.  We will have food fights and whipped cream pie tosses.   There will be glitter absolutely everywhere and kids will be encouraged to toss water balloons.  Let’s burst open some watermelons with a kid-friendly sledgehammer!! Once they are good and messy, we will hose them off with a fire hose. 
The format is similar to a carnival, with various tented areas, but instead of rides there will be a wide range of messy activities that all children are encouraged to participate in. 
I will need a lot of volunteers to help pull this one off.  Anyone available to come to the office in Carmel one day a week to focus only on the muddy puddles event?  If so, email me at muddypuddleproject@gmail.com  I am also recruiting a team who isn't afraid to get their hands dirty :)  Thank you all so much.  This is going to be such a fun event. 

Can't wait to get our websites finalized so I can show you all what we have been up to all this time!!!
Cindy




Monday, December 3, 2012

Reminiscing

I will probably be doing this all night.  I don't have much to say, but I want to share a few of the photos I am relishing in tonight.  I logged into Snapfish earlier and found some photo albums shared by others.  Can you imagine what a treat that is? 

I hope you can't, actually.  I hope you don't understand how truly delightful and how painfully sad it is to be exposed to new photos of your greatest love lost. Photos you've never seen before, even when you spend every single late night looking through photos upon photos upon photos of your own.  I hope you never know how incredibly bittersweet it is to stumble across new pictures like this. 

Ty's first birthday

The love of my life
In the hospital for all the right reasons. Gavin is born!

HEHEHE! My adorable little man.
 
Like I said, I can't say much more than this.  It's late.  I'm tired.  I'm missing Ty too much to talk. 
 
I had a good day today, though.  I worked hard at the office. Mely and I put some paint on the walls and cleaned like crazy.  I got one of my new printers up and running.  We are going to do so many amazing things on behalf of Ty and all of the little warriors and angels out there.  Just wait and see.  All of this is thanks to you. 

Saturday, December 1, 2012

I want you back

It's all I can think about.  Whenever I have a second to myself, all I say in my head over and over and over again is "I just miss you so much.  I want you back." 

Lou and I watched Ty suffer more than anyone knows and because of that, I am relieved my baby is free.  But that doesn't stop the constant panic and need that I feel in my heart.  I long for my baby boy back and the longing is so intense I can't even find the words to describe it.

The other day I screamed out loud in the car for what might have been a half hour.   "I love you and I miss you so much, baby!  I just want to hold you!" I yelled.  "To kiss the warm crook of your neck.  To feel your lips against mine.  To have your skinny, bony, beautiful butt attached to my hip. To hear your giggle. To apply your favorite chapstick to your poor, dry lips. To reach my arm back in the car and hold your foot. To stretch out your fingers so I could hold your hand in mine.  To snuggle up to an episode of Max & Ruby.  To sing some of your silly songs for you.  To play a game of i-spy. To take a trip to the candy store.... every single day..."  I could add to this list for an eternity and still find things I miss doing with Ty.  Like I said in my last post... the place I miss most is the hospital, which is also the place I hated the most.  What I wouldn't do to be wearing my hospital slippers, walking the halls of the inpatient side on the ninth floor, and making myself a cup of the grossest instant coffee you can imagine.  The reward would be climbing back into bed next to my angel baby.

I want more than anything to ask him what he's doing.  I always wonder what he is up to.  Are you so happy?  Where are you?  What is it like?  Who are you with?  Do you see me when I cry?  I hope it doesn't make you sad?  I try but sometimes I just can't help it.  Lou and I have been his caregivers and his protectors.  I can't even tell you how empty and lost we feel without having him to care for.  Our arms our empty and nothing will ever fill that void. 


SuperTy friends... Meet SantaTy :)

Christmas is eff-ing horrible.  Lou and I are doing it, though.  We don't want to, but we are.  We even went to our tree farm... Ty's tree farm... and cut down a tree.  It is the hugest, most perfect and amazing tree you have ever seen.  We did this all for Ty and Gavin.  Ty has picked out the tree to chop down in 2010 and 2011.  This year, all Gavin wanted to do while we were at the tree farm was lay in the leaves (typical), so when he showed just a remote interest in this one tree we said "okay, this is it."  As we walked back to the car I was holding Gavin's hand and the sunlight broke through the clouds to brighten the chilly afternoon and warm my shoulders for five minutes.  I imagined it was Ty's way of telling me, "it's okay." 

I mentioned how I long to kiss the warm crook of Ty's neck.  For the past two years he was so weak, I constantly held him with his head resting on my shoulder and my own face nuzzled into his neck.  I kissed that warm, smooth spot countless times.  It was my utmost favorite.  After he passed away, I held him and placed my lips on his neck for so long I may have fallen asleep there.  Tonight, Gavin said "I want to hug you for a long time" as he stalled before Lou brought him up to bed.  In the middle of our long hug, he randomly pulled back to look me in the eye, then he brushed my hair off my shoulder and gave me a kiss on the neck out of nowhere.  I promise you that it was a kiss from Ty.  I am still tearing up over the beauty of it.  Thank you, baby.  Both of you.  For being the best boys a mommy could ever want.


She's HUGE this year.  Best one yet in honor of Ty.

The holidays are going to be so ridiculously hard.  How am I supposed to do this?  Every single thing we do is so Gavin doesn't miss out, and for Ty - in case he's watching.  Christmas was his all-time favorite thing.  The last catalog I looked through with him was a Frontgate Christmas catalog.  He just loved looking at the decorations.

Last night we decorated the tree and my face was covered in wet, runny mascara.  It was swollen until late morning.  This is just so hard.  But we simply can't take a year off.  Gavin is three and a half years old and this is the most magical time for him.  I was sitting on the couch silently sobbing when I realized he was sitting on the floor and shaking a silver bulb in his hands whispering "I believe... I believe..."  He needs to have Christmas.  Although, you might not think so from this hysterical picture with Santa (a different Santa from last time).  Tee hee. 



Do you think Ty sees the tree?  Do you think he was watching us when we hung the first ornament?  Lou was so sweet when he explained to Gavin that he is taking over the very important job of hanging the first ornament.  This has been Ty's job since he was only two months old.  God, how hard this was.  And how WRONG it was.  THIS???  REALLY??? This is NOT supposed to be the first ornament hung on our tree.  This is simply not enough.  I want the real thing.  This sucks. 


Tonight Gavin told me something really goofy.  It was actually something totally out-of-character for him, but instead it reminded me of something Ty would have said.  I told him that.  I said, "Ty would have thought that was SOOOO funny!"  And Gavin said, "I want you to tell that to Ty when you get to heaven.  I want us both to tell him when we go there."  My sweet Gavin.  You understand more than I give you credit, don't you?

 
Ty, I love you.  As hard as this may be, we will always keep doing this for you and your brother.  We love you so big much infinity.  XOXO.