Tuesday, February 26, 2013

amazing is an understatement

"Maaa-Meeee?" Gavin said waking me up this morning.
"Yes?"
"I wuv you."
"Oh, thank you.  I love you, too."
"Maaa-Meee?"
"Yes?"
"I wuv you more!"  Big smiles all around.  What a way to start the day, right?

A new donor gave some very kind feedback on the foundation website today.  "He must have been one amazing little boy."  When I read that, all I could do was smile and think, "amazing is an understatement."  It makes me so proud to hear that kind of feedback.  To know that it is obvious how special my angel baby was and is. 

I know I don't need to remind you about his magnetic smile, but I can't resist.  Here he is, waiting for Max and Ruby to take the stage (yes, there was a live show that toured in 2011, we even have the soundtrack and I can sing every word because Ty loved it so much).  This was one of Ty's greatest days.  He was pure beauty and happiness through and through.  "Special" doesn't do him justice, either.  He is greater than that.  I am so inspired by his strength, his perseverance, his courage, his love for life and his unending smile despite it all.  He suffered beyond belief.  He hurt more than he didn't for over two years.  His little body was literally destroyed, but you wouldn't know it when you saw him smile.  It could make warm rosy cheeks emerge on the coldest, grumpiest of grumps. 



Gavin fell asleep in the late afternoon the other day.  He passed out right on top of our ottoman with his shoes still on.  Inside the ottoman we store our throw blankets, so I had to move him to open it.  When I did, he awoke very cranky and I told him not to worry, that I was just getting him his nana blankie.  I didn't see it in there and immediately remembered it was Ty's nana blankie that I was looking for, not Gavin's.  Of course Nana has knitted blankets for Gavin, too, but he really doesn't have one that he connects with.  With that, I almost panicked when I couldn't recall whether or not we cremated Ty with his favorite blue blankie.  I've been getting so worked up lately and my mind is playing tricks on me.  I can't even believe it was a question in my mind!  Of course I remembered soon after.  We did not cremate him with nana blankie because we wanted to always be able to hold it and smell it and think of Ty.  Instead, we covered him with the pure white nana blankie that she knitted for his baptism before he was even born.  I haven't had the courage to snuggle with Ty's nana blankie since I packed it away safely.  I miss seeing that soft, blue blanket all over the house and in the backseat of my car. 

I had a similar panic recently when I saw a photo of Ty wearing his slippers. They are gray sock/slippers that he wore constantly since he couldn't walk. He got compliments on them wherever we went, too. I left Gavin and ran upstairs to Ty's Captain America room immediately. I opened his closet (which is always painful for me, because it is filled with the pillows on which he last rested his head. The sheets. The batman blanket that we used in his stroller. The towels we used after we last bathed his beautiful body. I don't ever take these items out to touch them, but I might rest my hand on the pillows or towels for a moment. It's just too painful.

I stood there with the doors open and thought about the day we lost Ty, letting the weight of my loss and the magnitude of my grief consume me for a while. I looked up, and there they were. Next to his "The Who" tee, his red fedora, his Reefs and his cut-off shorts. I turned them inside out and buried my nose in the slipper to catch any shred of a scent - even his stinky feet smell is the greatest smell I could ever imagine. It was there, ever so slightly, and I am so grateful for that.  I also discovered that there is an outline on the suede bottoms where they had gotten dirty during the days where he could walk with assistance. I can see the shape of his footprint, his little toes. I am so glad I found them and had a chance to cry over him in peace (and not in my car for a change).

I've been doing this more often lately.  Gasping and panicking over the thought that I may have misplaced something very special that once belonged to Ty.  I think it is because his physical presence is slowly disappearing from this house.  The bulletin board is getting covered with more and more pieces of new artwork that Gavin brings home from school.  Gavin is growing out of the clothes that Ty used to wear, too, and I'm buying all new clothes just for him.  The pantry is filled with less and less candy and snacks for Ty.  Stuff like that. 

I have been doing okay.  I found a small sparkley star sticker on the floor in the toy room today.  It was one that Ty picked out for Gavin after he completed one of his daily oxygen treatments.  He always picked out a blue one for himself, another one for me (any random color) and for Gavin a red or green one.  It was a ritual that he never tired of.  I love finding his reminders at very unexpected times like that.  It is painful to imagine that they will get fewer and further in-between as time goes on but I know that is inevitable. 

Yesterday the Taylor Swift song, "Ronan" was going through my head all morning.  I sang it outloud with a quiver in my voice and tears in my eyes whenever I was alone.  Then, that afternoon, I played the Pink song "Beam me up" about a dozen times on my phone and cried my heart out.  It is just so incredibly powerful.  It makes me feel at peace about Ty, but it certainly doesn't help me miss him any less.  Nothing can do that, and that's okay.  I don't ever ever ever want to stop missing him.  I don't ever want to feel all that I feel for him any less.  I keep busy, I am living my life, and I am okay doing it this way.  If I have to pull over to get through a song on the radio once in a while, that's okay with me because stopping what I'm doing and thinking of Ty is so important.  He will continue to do great things in this world, and I hope to be a vehicle for some of those great things.  I want to make him proud by honoring him in any way I can. 

I have mentioned a bunch of times that Lou and I read one entry from our Project Treasure box each night.  We were both happily surprised by tonight's letter.  I am pasting a quick excerpt below because it is such an incredible example of how far and deep his story has traveled:
"...I am the CEO of Project Treasure.  It just so happens that I have also followed Ty's story for the past year.  I have prayed for Ty, cried for Ty, and smiled many times at the goodness you shared through his blog.... so when I saw your name come through on a Project Treasure order, it brought me so much joy.  I hope it's something that encourages and comforts you."

It is.  Thank you :)

Monday, February 25, 2013

New old photos. My favorite!

I received some new photos of Ty tonight from my friend, Linda.  He's just a baby, maybe five months old.  It was his first mini-vacation -- we took a plane into Cincinnati for my friend's baby shower.  He was such a perfect little baby.  We were so happy.  Never, ever, ever would we have imagined the life we are living now.  He was the picture of health.  Now I look at these photos and I can't help but wonder, "did he have cancer yet?"  Impossible.  Just look at him!  How could cancer have ever happened to this little piece of heaven?  I look at that famous smile of his and despite my pain, I also feel so proud. 



We had a busy, happy weekend.  Ty kept me smiling by sending me bluebirds here and there.  Even tonight, when I saw The Avengers take the stage during the Oscars, I smiled for him because I know he would have gotten such a kick out of that.  We LOVE Chris Evans!!  I was happy to see him on that stage (and all of those super cute, super funny, superheroes).  The awards show otherwise had some snoozer moments for me -- too many slow songs -- with the exception of Seth MacFarlane because that man is hilarious.  But, I digress.  I am a far cry from an entertainment blogger so please forgive me for even sharing my opinion :) 

My mother's birthday is this week, so I asked my entire family to come up and visit for the weekend. Mom, Dad, my brother and his daughters, my sister, brother-in-law and their boys. We had a full house, lots of delicious food, champagne, cake, it was really so nice to be together to celebrate my mom.  She's the best mom anyone could ever ask for, and I am just so happy to have been able to throw her a little party for her "59th" birthday (wink wink).  She is going to kill me for this picture, but I can't help it because it cracks me up.  Me and my mom, I just love her so much. 


On Saturday I took Gavin to the local ski mountain along with his cousins and there was a giant puddle in the mud.  He splashed, then jumped, then in typical Gavin fashion he slipped and fell in it.  The water was deep enough that he was soaked to the bone and I saw him debate crying before he decided to laugh instead.  Thanks for that, Ty.  It would be a disgrace if the family who is launching "the muddy puddles project" didn't do well in muddy puddles :) .  My only regret is that I didn't have the camera ready!  We will have to do it again when all of this snow melts. 

As you can imagine, we had toys everywhere.  When I was cleaning up later today I found a miniature "Goofy" figurine that I haven't seen in ages.  I cried a little bit because I simply can't remember if it was Ty who loved the Mickey Mouse set it came with, or Gavin.  I realize this is a totally normal thing that happens to any mom -- time goes by and we can't remember even the things we thought we'd never forget -- and it's totally sad when that happens regardless!  Sadder when I don't have Ty sitting on the couch to ask about it, though. 


However, I do have this blog and I am so glad for that.  I never kept a journal a day in my life before our lives got turned upside-down, and writing through all of these ups and downs has saved my life and helped me maintain perspective.  My great friend Caryn had the entire blog designed and printed into a beautiful book.  It was the greatest surprise during our visit with her last weekend (in DC).  I have been thumbing through it every day since.  I come across blog entries that break my already broken heart all over again, and then I read about some of the miraculous moments that reminds me why Ty was so incredibly special (not that I'll ever, ever, ever need reminding).  Again, he just makes me feel so proud.  Thank you all so much for loving him like you do.  It means so much to Lou and I. 

I know you all know this, but gold is the awareness color for pediatric cancer.  September is pediatric cancer month.  The Ty Louis Campbell Foundation will launch the muddy puddles project in the Spring, followed by a lot of activities focused on going gold this September.  Someone has already kickstarted that process by making a gold ribbon awareness "spangle" at http://www.sbangle.com/ribbon.html :) Thank you, Vicki!  I can't wait until the day that I see all sorts of gold merchandise on the store shelves to help our KIDS!!!!  I have so much confidence that this will be the year where we start to see a shift :)  Thanks to all of you. 

Friday, February 22, 2013

The love of my life, indeed


I am doing better the past couple of days.  Very, very busy trying to get The Muddy Puddles Project ready for a Spring launch, but all of that is good and exciting and very rewarding because it is all for Ty.  There are so many people, all of you, who have gotten behind this cause because you have been touched by my angel baby, and that makes my life that much better despite it all.  How can I look at his pictures and not smile along with him.  I cry and ache and long for him, but I smile, too, because he was that special. 


I don't have a lot of time for a detailed update tonight because it's so late, but I do want to share with you one short story that is weighing on me. 

At five in the morning, Gavin woke me so I could pull him into my bed.  He does this at some point every single night because it is too high for him to climb up on his own.  It has become such a routine, I usually don't even know what time he comes in and sometimes wake up with no recollection of pulling him up at all.  But there he is, every morning, and I relish in his warmth.  He isn't a snuggler like Ty - instead he squirms and kicks and makes it hard to sleep, but I still love having him there, in the same spot where Ty used to sleep.  It makes me feel a lot more comfort than our scratchy little "Ty Doll" provides.  Besides, sleeping with a doll to make pretend my son is still with me makes me feel a little sad and desperate (don't get me wrong, I still do it every night when falling asleep).  Waking up next to Gavin is a reminder every morning of why I have to get out of bed and make the most out of my life in honor of the best good boy in the whole wide world. 

When Gavin came in this morning, however, it was different because he was awake.  He woke me up talking to me and crying.  He asked me, "can we go to heaven now?" 
me:  "What do you mean?  Why are you asking me that?"
G:  "NO!!  Just say we can go to heaven now!!" Crying.  Only half awake.  Yelling at me. 
me:  "Baby, we can't go to heaven right now, but some day..."
G:  <interrupting me> "Just say yes. You say it.  Say we can go to heaven now!!!"  Yelling even louder.
me:  "Okay, we can go to heaven now."
G: "Can we go to heaven now?"
me:  Yes, we can go to heaven now."

He went right back to sleep after that and we haven't talked about it since.  He must have been dreaming, and sad, and I just wish there was something I could do.  Poor Gavin has so many questions, and he doesn't accept my explanations easily like Ty always did.  He can't just smile and "get it" when I tell him that Ty is in our hearts.  He has a very literal understanding of that.  He also asks me about God's house all the time.  What does it look like?  What does God look like?  He is trying so hard to have a visual understanding of where Ty is.  This has resulted in Gavin becoming more curious, in general, about how everyone lives and what everyone's "house" looks like.  I am confident that this is all just a normal and healthy way of him processing all he has been through, but that rationale can't stop me from being sad for Gavin and all he is dealing with in that poor, confused, "big-boy" head of his.  When he has a sniffle, he also tells me he's sick and asks me if God is going to take him to heaven now.  Poor baby.  He shouldn't have to worry about that.  It breaks my heart. 

Then I come out from the bathroom to find him watching TV like this, and I realize he is going to be just fine, right? :) 



So, I have been having an extra hard time lately because I haven't really had any significant signs from Ty.  All week I would think I saw a hawk overhead, and then exhale in disappointment realizing it was a turkey vulture.  No ladybugs.  Nothing.  Then yesterday I was sitting at the kitchen table working on foundation stuff while Gavin was sitting quietly in the den watching a movie.  I didn't move.  Nothing shook the house in any way.  But out of the clear blue, I heard a loud noise and turned to see that a magnet had fallen off the fridge  It was the very first magnet Ty had ever made.  He brought it home from preschool and it has been on our fridge for years.  Not only did it drop. but it landed really far from the fridge upside down so I could see his name written on back.  It didn't break.  I hung it back up and when I did I looked to see if anything else on the fridge had shifted that would cause this magnet to fall.  Nothing that I could see, anyway. 


I truly take that as a sign from Ty.  He is with me, always (except, I hope, for when he is off having lots of fun with his friends). 

Before I sign off, I want to share this with you.  It is very serious and very scary.  There is a chance that the government budget cuts - to be decided on in March - will greatly affect funding to the National Cancer Institute (NCI).  The NCI is what drives the Children's Oncology Group which is the largest team of childhood cancer researchers in the country.  If this happens, studies that are showing progress today will be put on hold.  Future research projects that are already grossly underfunded will not get funded at all.  More children who are holding onto hope for new treatments will die before those treatments ever become available.  Please take the time to click on this link, read more about it, then enter your zip code to send a note to your local congressperson.  It is so easy.  Our friends at St. Baldrick's have done all of the work - you don't even have to write a word.  Please do this. 
https://stbaldricks.capwiz.com/stbaldricks/issues/alert/?alertid=61990546

Goodnight and thank you.  Always begging Ty to visit me in my dreams.  I can't wait for the day he does. 

Tuesday, February 19, 2013

Go back to work, Papa! Ty needs toys :)

Nothing new to report.  We are all doing okay.  I just came across this video the other day and had to share.  Ty loved looking through toy catalogs.  Especially because all of his ups and downs had him confined to a bed or the couch most of the time, so this was a fun way to pass the time and keep him smiling.  He picked out so many toys, he told his grandpa "Papa" that he was going to have to "go back to work!" just to pay for them all :) 

WATCH HERE ON YOU TUBE

Monday, February 18, 2013

This isn't where it ends. There will never be an end to our love story

Ty is in every star in the sky.  Every setting sun. The embrace of every warm breeze.  But with all of the hope that I hold in my heart, it doesn't help me escape the fact that I miss everything about him, every second of the day.  Ty, baby, I miss your soft hair.  Your breath.  Your high-pitched baby voice.  Your smell and how your skin smelled different from your hair and your neck smelled different from your feet.  But most of all, your smile.  You went through hell.  More than I have even shared on this blog because yes, your pain over the past two years was that bad.  But you smiled all the time.  Regardless.  You loved it.  You yearned for it.  You truly wanted to be happy.  And you allowed yourself to be happy despite it all.

Remember that the next time you think "if only I could be happy!"  Look at how funny Ty thinks this is.  We took all of Gavin's toys and put them on the couch to watch Toy Story with the guys. Ty thought it was the funniest idea in the whole world.  So simple.  That's what makes him the most amazing boy that ever lived :)  Happiness should be this simple. 


 

Life is moving on without Ty, though, whether I like it or not.  I don't get to stop time. I had to move on or die myself because people depend on me and my family is everything.  I have wanted to quit many things in life, but I would never quit living.  Especially because I know this isn't the end of Ty and me.  I will see him again.  And I do still (in the clouds, the falling leaves, the rainbows and yes, the ladybugs).  I look for him constantly. 

Today was one of my worst days with Gavin in a long time.  Through no fault of his own, I found myself having so little patience for him.  I hate it, especially because it is the exact opposite of what I preach.  I was very aware of it, so I think I was able to hide it well from him, but it was so hard. There was no school today and he is usually so independent, but today he was yelling for "Maaa-Meee!" every three seconds.  I wanted to curse and scream each time!  I wanted so much to enjoy my Gavin, but today I just couldn't shake the funk.  We did have a very long story time (almost 45 minutes - he just LOVES books) and we did have a nice dinner tonight.  Other than that, I can only be honest to admit that I was happy for it to be dark out and ready for bed.  Through no fault of his own, I just couldn't do it today.  Sadly, I can't even say I did do it today, because I sought reprieve at my mother-in-law's where I dropped him off so I could go to the office and escape for a couple of hours. 

This is because, at least for me, grief comes in spurts.  Obviously, I've had a few particularly bad days in a row.  I know this is cyclical and I am already better today than yesterday, but it just exists, it comes and goes, and that's all there is to it. 

I just want my life back with Ty.  Even at his worst, at least he was with me. 

I think I have learned about how my grief seems to hit me.  It comes in like a tsunami.  Totally unexpected, while I am otherwise reading a magazine and almost even relaxing in the breezy sunshine on a lounge chair.  It is merciless.  It removes me from everyone around me and I am left to hold onto whatever might be in my reach just to keep my head above water.  Alone without any help.  Some offer to help.  They say "i am here for you" and I am so grateful for that, but they are simply out of reach.  When the water subsides and I am surrounded by death, destruction and devastation, I am left to feel nauseous over the petty troubles in the world of everyone else around me (i.e. if your son's teacher gave him a B minus when he deserved a B). 

I feel guilty when I laugh (because it is disrespectful to Ty) and I feel guilty if I cry (because it is going to ruin Gavin's chance at a normal future).  I look in the mirror and think in two years I've aged over a decade.  I remember exactly what Ty looked like after he died and replay the moment he died several times a day. 

The good news is that despite all of this, I am laughing more often.  I am trying to wear makeup almost every day.  I am also remembering what Ty looked like during his healthiest days and it makes me happy - for real happy.  I find so much joy in remembering his smile, and I love to watch his videos and thumb through his photos at night.  Where would I be without him?  Like I always say, despite it all, I am blessed and lucky.  Ty and me are the best it gets.  I miss him, I love him, and I think God for him. 

Thank you all for your love and support.  I hope to feel better tomorrow.  In closing, here are two delicious, never before seen photos of my boys.  Ty, no hair, chemo, still loving the carousel yet again (how does a kid with a brain tumor like this - it makes me want to throw up every time), And Gavin giving a big ole' smooch into the camera. 




Friday, February 15, 2013

Ty is alive in so many hearts

Today I received a Valentine's Day card in the mail that said "Ty is alive in so many hearts this Valentine's Day, and I am so lucky to have a part of Ty in my heart..."  (thanks, Deb).  That means more to me than anything else.  That Ty is in your hearts today and every day. 

I never imagined that something silly like Valentine's Day would be hard for a grieving mom. I never realized how much candy is out there on Valentine's Day!  Giving Gavin his little present this morning (some spiderman chocolates and a new mini Green Goblin), it just felt so wrong that I didn't have a present for Ty.  I didn't have anything but tears for poor Lou when he came home after dropping Gavin off at school, and then he showered me with surprises like the wonderful husband that he is.  I was shocked that he had put so much thought into this silly holiday, and mad at myself because I hadn't even gotten him a card.  I just didn't care about this day one teeny, tiny bit.  Then he went and made it special anyway, and it made me feel a better.  I think my slump is beginning to turn around and hopefully I'll be on the up and up over the next few days. 

I made a lame attempt at making up for it by going to CVS with Gavin to get Lou a card.  Gavin picked out Spiderman (of course), I bought one, and I decided I would make one from Ty that had a bunch of ladybug stickers.  At the register I spotted the berry sour patch kids that Ty used to eat like crazy (I used to buy six large bags at a time because Ty would only eat the blue ones).  I had to buy it.  And a blue push pop.  That's what Ty would have picked out if he was with me, so that is what Lou got for his Valentine's Day present.  It's perfect, right?  That and I cooked for a change.  Well, I half cooked.  I broiled up the steaks and whipped up a Bearnaise, but bought some pre-made sides.  Hey, at least I made an effort and to be honest, it was off the hook delicious. 

I wish I had new pictures of Ty making a Valentine, or Ty hugging Gavin, or (most of all) me holding my Ty.  Instead I had to look back into my photos from last February.  I found another one of him in his famous winter hat, one of the Valentine's Day cards that Ty made for his classmates at school with my help, and one of Gavin wearing the "Woody" cowboy hat that me and Ty made for him one day at the hospital. 


 
See the "T" on the top right?  And his scribbles?


When Ty was sick, I didn't get close to other cancer families.  I didn't know many of the children personally and tried not to follow too many blog posts or caring bridge entries just because my heart could only take so much... but of course there are children that are in my heart forever no matter how hard I tried not to love them as a means to protect myself. Tanner, Grace, Mikey, Ronan, Henley, Brooke, James, Cole and so many more.  All of them fighters.  Many are gone now, like Ty, but many are still fighting and winning!  The real reason why I was afraid to love these kids was because I had a tremendous guilt every time I sat down to pray for Ty.  Pressure to pray for all of the kids with cancer, of course.  But, in all truth, if there was only one miracle to be had... I begged for God to choose Ty.  How could I not?  I love all of these amazing, beautiful and courageous kids, but I love Ty more than any other love on the planet. 

Now that Ty is gone, I find myself able to talk to so many cancer moms and others whose lives have been affected by cancer and it has helped me so much!  Redirecting all of the time I spent caring for Ty, I am now joining the amazing fight on his behalf and it helps me cope.  My greatest purpose in life was to take care of Ty and Gavin.  Now that half of that is gone, I try to fill that time by throwing myself into the cause and it's so very good.  Of course, it fills the time but nothing fills that void.  That's just going to hurt always.  It will always be there, even on my best days.  It has been almost four months, and not a second goes by where I am not aware of what is missing.  But that doesn't mean I can't smile, and for that I am grateful. 

I pasted this quote to the blog last year, so I am going to post it again on this Valentine's Day because it is so beautiful.  Tonight, I am off to bed feeling loved. 



XOXO.

Tuesday, February 12, 2013

I'm just sad

I have had three very tough days in a row.  That's going to happen sometimes.  I am writing this knowing it will be a short post because I am swollen from tears and fighting a terrible headache from the crying I've done tonight. 

But I am okay because I am trying so hard to occupy my time doing things to help Ty, the next Ty.  It has been such a blessing and a curse.  I never want his story to end, but with that comes a tremendous amount of stress and longing.  I don't want to be working on my laptop 12 hours or more a day just talking cancer research and fundraising.  I am stressed out in a way that I have grown to preach against ever since my baby got cancer!  I can't help but feel such an enormous responsibility to make this right, and I just hope I can do something in this meager life of mine, to make a difference in childhood cancer treatments.  But I need to balance that time while practicing what I preach and enjoying my Gavin, and I need to figure that out. 

I was driving somewhere today that took me past the Putnam County Hospital where I got Ty's weekly bloodwork done most frequently.  Memories of the drive came rushing in (as always, because this isn't far from where I live).  How I would have to make pretend like I didn't know where we were going.  How I would try to distract him or redirect his questions about whether or not he was going to get "bwud-work" because he knows that means a painful needle in his arm.  Every week, at least once, he had to get bloodwork.  One time he fought me so hard, he tore off his sweatshirt, scooted out the lab and down the hall screaming, "no, no, no...." while we were waiting.  Someone walked past, having no idea that he was too handicapped to walk, and said something about how he would have a better chances of escape if he started running.  Oh, how he would have ran had he had the chance.  Believe me.  I just let him scoot and scoot away. Run baby boy.  I wanted him to feel like he had some control for as long as possible, until they were ready for us anyway.  On that day, I was grateful for a young man, new to the lab, who brought some dinosaur fruit snacks with him in his own lunch.  Whew!  That brought my Ty back to the room.

I hope that my love story with Ty lives on forever.  What he has been through alone shows how his legacy needs to live on.  His story needs to be told.  The truth is... he is my son.  Not my Uncle, my Dad, my Husband or my Brother.... all of whom I couldn't imagine losing.  But I would trade any one of them to have Ty.  I always offered myself first, obviously, and as for the rest of them... they are older and enjoyed life.  I offered them up, too.  Ty never had that chance at life.  He was 100% innocent.  It's just cruel and unfair in so many ways.  I love Ty more than anything imaginable.  Our love story should live on forever. The good news is that Ty continues to fill me with his love everyday and on my good days I can go on living life and smiling at the secret truth that I know.  Bigger things await. 

Oh how I miss his skin.  Milk and Honey.  Kissing his beautiful, full lips.  And his laugh, it is will never be forgotten. All I want is my child back. My healthy child back before all of this cancer bullsh*t that destroyed his childhood.

My Gavin is my lifeline.  I kiss him a million, trillion times a day.  Thank you, God, for him. 

Sunday, February 10, 2013

Please send me a sign


Just look at this beautiful child.  People always stopped to watch him, wherever we went.  Do you think he knows? Do you think it was weird that Daddy was carrying around his fluids in a backpack?  That he was glad to finally be home from the hospital, but wondered why he still had the needles in his chest?  I can't look at this picture and not want to get inside that head and know what he's thinking.  Thoughts that no three year old should have to ponder, but that I know he did.  He was smart and so in-tune with how Lou and I were feeling.  He could read our anxiety under the greatest disguises. 

Thank you all, so much, for being so supportive.  We have our good days and bad.  I've been feeling exceptionally sad these past few days, but it's all so normal.  I haven't seen any signs from Ty, and that just breaks my heart and makes me feel desperate.  I'm overdue, I think.  It's just what I need to pick me up out of my slump. 

I did have a few good hours out in the snow with Gavin today.  We built an igloo (well, only half of one because he gave up very quickly). 



After we shoveled the walkway and made a lame fort, Gavin wanted to play on his playset out back.  I was happy to do so because I thought for sure I would see Ty there, waiting for me in the soft quiet of the snow.  He and I used to sit the picnic table underneath the slide for lunch and snacks every chance we could get back in the day.  I loved to eat outside on a beautiful day in Long Beach, and he loved to eat at his mini table.  Lots of time was spent there, we even used to bring Gavin's high chair out back to enjoy the weather and the salty air at mealtime. 

Today I sat in our spot and tried to find a trace of him or a sign from him.  I climbed to the landing at the top of the slide with Gavin and looked for him everywhere.  We swang on the swing.  I slid down the slide.  Nothing.  Where was he today?  I hope he is off having fun, but I really need him and miss him, too. 

I hate that I need him.  It's not his job to worry or take care of me.  I don't want him to because I should be taking care of him!  He obviously had a tough time in his five short years, so I like to imagine he is free to go buck-wild now.  Swinging from chandeliers and giggling uncontrollably.  Surrounded by children doing the same. 

I feel ridiculous when I ask Ty to do something for me because I should be stronger than that.  Let him have fun and forget about me until my day comes and we can all be together.  But on that same note, to imagine the rest of my life without any ladybugs, falling leaves or winking stars makes me wonder how I would even continue to put one foot in front of the other.  I truthfully need to see these signs sometimes because they reinforce my belief that he is with me, that he knows behind my smile is a head swirling with thoughts of him, and that he is okay wherever he is.  I hope he is always inside my head and knows that 99.9 percent of the time, I am thinking of him in some way.  Because I am. 

We've been snowed in and I'm learning that the weekends are the worst.  They are too boring.  Too much time sitting around being sad.  We were supposed to visit friends in DC, but with the weather and my cold, we rescheduled for next weekend.  We also have several other big trips planned, and I am excited. What better way to cope with pain than running away from it, right?  Not sure if any therapists would agree, but that's how we're doing it, and I think it's brilliant.  DC, Dallas, California, Montana and Dominican Republic, here we come.  It sounds ridiculous, I know, and a lot of this travel is also due to foundation opportunities, but it will be a great escape regardless.  Goodbye sad, quiet house.  We will try to spend the majority of our upcoming weekends anywhere but here.  Because this quiet house of ours, where I search for Ty and keep his favorite things on display like a museum?  This is just not healthy.

Before I sign off for the night in an attempt to retire early and get healthy (!) I want to let you know that we gave in and got Gavin's hair cut.  He keeps asking me if he still looks like Thor and I feel terrible but I tell him "yes!"  I just think it's better if he believes he still has long hair.  He really doesn't think it's any different.  My baby.  He is such a good boy.





Saturday, February 9, 2013

When I grow up, can I say sh*t?

Oh man.  I guess I curse more than I realized.  I’m always talking to myself like a delusional crazy person and don’t even know what’s coming out of my mouth.  Now I know that Gavin’s ears are always open! 

Gavin, sitting sweetly on my lap and reading a book, turned his head to look at me and softly said, “Mommy?” using his sweet, drawn out voice that is usually followed by an “I love you.”  This time, however, it was followed with, “when I’m a grown up, can I say SH*T?”  It was so unexpected, so innocent and so adorable that all I could do was giggle.  I hesitated for a second before I answered, “You know what?  Yes.  When you are grown up, you can say sh*t.  I really don’t care.  Just don’t overuse it or it will lose its significance.  But for now, when you are a little boy, you can’t say that.”  Surprisingly, he didn’t argue.  He was happy with my answer I guess.

Sometimes I get caught talking to myself or to Ty, and Gavin will say, “HUH?”  Then I have to stop myself and explain.  I say things like “don’t listen to crazy mommy.  I’m just talking to myself.”  Probably not the best explanation because this morning over breakfast I heard him say “don’t listen to your crazy Gavin” with a giggle.  Oh boy. 

I really do spend all day talking to myself and to Ty, who knows what comes flying out of my mouth.  I am not healthy.  I’m really not.  I finally went to the doctor for a physical yesterday after three years and I felt so incredibly heavy while sitting on that table.  It was as if I was just beaten down, totally deflated, and that’s the truth!  I have taken quite a beating, and I want to get better now even though I know that’s impossible. 

The interesting part of this story comes early on at my appointment.  The nurse who was taking my basics like height and weight asked me what brought me into the office.  If I had any concerns other than getting a basic physical.  I told her about the nagging cough I’ve had for over a month, then rattled off a quick “my son passed away three months ago and I am really unhealthy, that’s all.”  “I’m sorry” she said, and continued to work through the basics of my exam.  Then she asked me, “when did you say he died?”  “Three months ago.  He was five and he had cancer for a long time.”  Isn’t it amazing that this adorable woman went on to tell me that she lost a son in 2006, that she attends an amazing group in Poughkeepsie to help her cope, and she thinks it would really help me.  Others have recommended bereavement counseling to me, too, but for some reason I feel that the stars were aligned and I should actually consider looking into it.  These wounds will never heal, but I need to learn to live with the pain.  As much as I hate the idea of bereavement counseling, I don’t know why – probably because I always imagined it would be pointless because it’s not like anything can make this “better” – I think it was a sign that I need to at least give it a try. 

It was an embarrassing discussion once the doctor came in.  I explained how I think I am seriously insane.  I told the doctor how my mind is spinning and fragmented and I have completely insane thoughts running through my mind all day long.  How I talk out loud to my dead son and imagine he is sitting on the couch next to me.  I told her that I see him everywhere, and I really think it’s him.  Am I nuts? I told her about being diagnosed with Post Traumatic Stress Syndrome over a year ago.

Let’s be honest.  I probably am totally nuts and I can prove it.  I share everything here, so please don’t judge me on what I’m about to disclose.  At my lowest, very soon after Ty died, I tried taking Ty’s leftover pain medication to somehow treat my pain.  Morphine.  Oxycodone.  Drugs my four/five year old son never should have been on.  I was in SO MUCH PAIN (still am), and I figured maybe that would help.  Well, both times I tried I puked my brains out and felt like a huge loser.  Lesson learned.  Nothing is going to take away this pain, and I deserved to be punished by being so stupid.  Messing around with that was a terrible idea, and it only left me more upset over all Ty endured.  I still have Gavin and I can't do stupid things like that.

G-LOVE!
Gavin talks about Ty just about every day.  One of today’s conversations:
ME: “Please stop climbing all over the countertops, you can fall and hurt yourself.  Remember when you fell and hurt your butt last time?”
G:  “Yeah.  If I fall again, then I’ll need a bandaid.” As he continues jumping and climbing.
“Bandaids don’t fix a broken bone.  You would need to go to the hospital.”
“OH!  CAN I SEE TY??!”
“Ty doesn’t live at the hospital anymore.  Where does Ty live, do you remember what we talked about?”
“In my heart.  Because Ty went to the hospital, and went in the rocketship, and then the rocketship taked him up to HEAVEN!!”  He’s referring to the hyperbaric oxygen chamber.  Gavin came with us a couple of times.  Don’t know why he decided that the “rocketship” took Ty to heaven, but I kinda like that :)
As always, he asked again if he could go to heaven.  I gave him the same old story.  I talked about how Ty was very sick so God let him into heaven early, but we have to wait until we are nice and old. 
“Did Ty want to go?”
“Not at first." I said.  "He got sick and God asked him if he wanted to go to heaven, and Ty said – ‘No Way!  I want to stay here with my brother because I love him so much.  I want to FIGHT!’  And he really did, remember?  He was so strong.  But Ty ended up being so sick for so long, that he finally had to leave so he could feel better and be happy again.”
“He was a fighter!” yelled Gavin, raising one arm in the air.  Just when I thought my heart couldn’t possibly grow anymore, a little bit of extra love squeezed its way in when he said that.  What a smart, beautiful kid he is.

By the way, his hair has been out of control.  Whenever we talk about a haircut, he tells me no.  He wants long hair like Thor.  LOVE HIM!  Ty would be getting SUCH A KICK out of the little boy he is becoming.   I hate so much that they can’t grow up together.  They were the best of friends.

At dinner, Gavin was talking about Ty again.  Made Lou cry, made me smile.  I was the last to sit down at the table because I had no appetite so I wasn't eating.  When I finally sat at the dinner table, which is round with four chairs, I said “I love my family.” Gavin said. “I love my family, too.  Mommy and Daddy and Gavin and Ty and he looked over at the empty chair.”  We were all thinking it, but he said it out loud.  That Ty should be sitting right there in that chair.  There’s not a meal that passes that I am not aware of Ty’s empty chair.  We’ve been taking Gavin out to dinner rather frequently, too, and still, every table is set for four.  We were never supposed to be this way.  A family of three. The empty chair and what it means never, ever escapes us.  We eat our dinner, we smile, we pretend we are a happy family, but the truth is right there in front of us every time.

Then Gavin said, “We need another person to sit in that chair for our family, now.  I know, who.  Maybe God?  What does God look like?”

The conversation went on, and I know it all stems from his confusion over what happened with Ty, who and what is this God, and where are they?  I wonder if I should consider some sort of sibling therapy for him, too. 

Last Gavin/Ty story of the night.  Sometime after dinner, Gavin had to go potty.  I still have to sit in the bathroom with him when he has to poop, and he always insists on taking off all his clothes.  He kept jumping off the potty to run around the house naked yelling “I’m Naked Boy!” until I finally screamed for him to come back or he’ll get a belly ache.  He sat down on the potty then and told me he doesn’t want to get a belly ache because then he will get a headache like Ty.  “Will I get to see God if I get a headache?” he asked.

Clearly, he’s confused and thinking about his brother all the time.  I’m not sure what to do about it. He’s so happy and doing well otherwise, but he says things like that and it just breaks my already broken heart.  I wonder if I could be doing a better job trying to explain things in a way that isn’t scary to a three-year-old.  We read books.  We talk about it all the time.  I think he is just at an age where he so wants to understand but he’s still just a little too young to grasp the concept of God and death.   My poor little man.  I hope I do a good job keeping Ty’s memory alive without overwhelming Gavin the rest of his life.  Because I will never stop talking about him.  My walls will always be covered with photos of Ty absolutely everywhere.  And although I take down and toss out some of Gavin’s artwork on the bulletin board, Ty’s will always remain. 

Before I call it a night, I want to share with your our video from sledding today so you don't worry about us too much.  We are still getting out there and having fun, I promise.  Gavin, Lou and I tried to have a family ride down the hill in front of Aunt Debi’s.  Gavin and Lou on the toboggan, me on a round sled holding on behind them.  Here’s what happened.  Be sure to keep your eye on Gavin, he was so mad!  He’s totally fine, of course.  You can find it here http://youtu.be/zLG6vJUV-B4



Friday, February 8, 2013

Everywhere I go you go, my dear

Whenever we crossed the Triboro bridge into Manhattan, Ty always used to say we were in the city where Spiderman lives. Well, yesterday I had a great day in Spiderman’s city.   I participated in some great meetings where I talked a lot about my Ty (something I love to do).  I had Ty’s locket on; the one that Gavin loves and the one that reads “I carry your heart in my heart.”  Needless to say, I felt him with me everywhere I went.  All day long. 

It was such a beautiful day, cold but clear and sunny, so after a meeting at Mt. Sinai hospital I took a walk around the reservoir in Central Park.  When I lived on the Upper East Side I ran that loop often.  I was reminded of how simple and fun my life was back then, but also how I would never want to go back in a million years.  I would rather have had Ty and have to live without him now, then having never had him at all.  I would rather carry his heart “in my heart” instead of holding his hand as long as he existed and I was lucky enough to be his mom.


Living in the city was great.  Life was fun.  But I realize now the tremendous, life-altering thing that was always missing.  LOVE!  The inexplicable love explosion that happened the second Ty was born.   I am so lucky that you were mine, Ty.  I think about that every day.  Our house is covered in your pictures and I just look at them in awe over you.  I love you beyond words. 

I don’t get rid of the strangest things just so that I don’t have to feel like Ty is gone.  I can’t escape it, but I certainly try.  If you came into my house, you would never know he died.  His toothbrush is in the holder, his bed is ready and waiting for him, his room is decorated awesome.  I don’t ever want to change any of that.  I think that toothbrush will sit there for an eternity!  However, every once in a while I do have a moment of missing Ty combined with a moment of strength that puts me into cleaning mode.  The other day, it was tackling the kitchen pantry.  Just one shelf (it’s a wreck – baby steps), but on that shelf was a half-case of his Boost meal substitute shakes.  I donated the unopened cases, but these I held onto just because.  They were expired.  I had to do it at some point, so I just did it.  I emptied them one by one into the sink and I was immediately overwhelmed by the distinct smell that I love to hate.  Those shakes were his only real nutrition for years.  It spilled on our pillowcases and couches.  I washed syringes all day long.  I could smell it through the tube in his belly at any time of day and when my poor baby threw up, that was what I smelled, too.  The memories came flooding.  Good and bad, I welcomed them all.  It is amazing how a simple scent can bring you back like that.

I think I’ve mentioned before that I have some of my grandmother’s very old furniture in my house.  There is an armoire, in particular, that still smells like granny’s house when I open the drawers.  She didn’t live in that house for the last 25 years, but the furniture still carries the smell and when I miss her I can always open a drawer and find myself right back in her bedroom, snuggling up with her on her bed and watching a black-and-white TV (that’s right, I am that old). 



Oh Ty, Ty, Ty.  How much I miss him.  How much he inspires me to just keep on keeping on.  I don’t think there is a person in existence that could love another person more than I love him, but I do know there are a lot of others who love with the same intensity and I am drawn to them. 

During my busy day I met with so many wonderful people who are in this fight with us.  One lost her husband, another his friend, another his brother, and then another Momma who lost her baby and shares the same love as Ty and me – Ronan’s mom!  I finally reconnected with Maya in person and she was kind, warm and oh so beautiful.  I was happy just to give her a hug and talk about how much cancer sucks over a cup of coffee.  To sit with another person who understands how much I love Ty, who knows the pain in my heart, and who has the same passion to fight burning ablaze in hers.   Someday she is totally going to build a world-renowned neuroblastoma treatment facility and I think that is just amazing. 

“Doesn’t it just suck that more people weren’t doing what we’re doing before our sons got sick?”  I’m paraphrasing from Maya, but yes, my thoughts exactly.  We both believe that our beautiful boys might still be with us if there was more advancement in childhood cancer research at the time our boys got sick (both in August 2010), more transparency between the researchers and the medical institutions and more transparency between the doctors and the patients, so that families like ours might have had more options.   What are they doing with brain tumor vaccines over in Belgium?  Germany is making amazing inroads in antibody therapy – how come we didn’t know this?  Is it risky?  Uncertain?  Unproven?  We’ll take it, just let us try.  It’s better than the alternative, which was that they died. 

Why weren’t we informed about flash-frozen tumor tissue being used for research?  That fresh tumor tissue can be taken straight up to a lab in the same hospital for genomic sequencing?  All of this is very new science and procedure that wasn’t available at surgery time for Ty, but if we had the foresight maybe we could have made it happen.  I am happy to say that it is becoming more and more of a standard practice over the past year or so… but there is so much more to be done in that area.  A more streamlined system for tissue sample and data sharing needs to become mandatory across all institutions.  A dialog needs to take place between doctors and parents pre-surgery (including the most difficult dialog about port-mortem tissue donations).  If it’s too difficult to present to parents face-to-face, put it in a pamphlet!  Just inform us!  I don’t know how, but I won’t stop asking for it until it becomes a reality. 

My meetings in the city have shown me that we truly are at the cusp of some amazing things in pediatric cancer research and treatment.  That a new standard of care is on the horizon.  That people are thinking more and more about the kids, how to invest in the most promising research, how to enrich the patient’s lives while they are in treatment, and how to help the families and siblings of the littlest victims.  These groups of childhood cancer advocates are driving a long overdue and fundamental change in the way pediatric cancer treatment and research is approached.  After every powerful person I meet, I become more and more energized and inspired.  My Ty is everywhere, I can feel him behind every word that comes out of my mouth, and I know that what we are doing is good and important.  Yessss!  No job I ever had made me feel like I was doing something good and important, except for the best job in the world which is simply being a mom to Ty and Gavin.  As hard as it is to be so involved when I have so much pain bottling up inside, I couldn’t imagine doing anything else with my life.  Ever. 

And, what about Maya’s petition to light the White House gold in September?  Is it possible that Barack Obama might say no?  Maya seemed unsure about what the outcome will be.  I didn’t know that he turned down a similar request to turn it purple for the March of Dimes, but that does make me nervous.  I’m sorry, Mr. President, but I’ll never understand or forgive you if you say no.  I can’t imagine why you said no to purple, either.  Just change the lightbulbs, what harm is there in that?  You are the President of the United States.  Pretty influential.  You signed the proclamation for childhood cancer awareness – now it’s time to back it up and I know you will! 

This is Ty's sign for "Peace Out"

Ty, you are my superhero.  I truly believe that you might have been president yourself someday.  Who wouldn’t vote for Ty Campbell? 

IMPORTANT NOTE BEFORE I GO:  You may have had difficulty finding the blog.  I had to deactivate the URL "Superty.org" for a short time until we can have a new landing page uploaded.  Hopefully by tomorrow (if the blizzard doesn't delay progress) superty.org will be a landing page with easy access to the blog, the foundation and the muddy puddles project.  The new urls for each with then be www.thetlcfoundation.org, www.supertyblog.org and www.muddypuddleproject.com  Soon!  I promise!  Sorry about the confusion.  Please let others know that they can find the blog at the old link www.tylouis.blogspot.com for the time being.  Thank you!

Monday, February 4, 2013

Happy and Sad

"I am both happy and sad at the same time, and I'm still trying to figure out how that could be." Stephen Chbosky

I think I had a happy day today?  I can't believe I am writing that, but I can honestly say that I enjoyed our sick day today.  Gavin and I had a lot of fun just being together with nothing to do but wipe noses and spend all afternoon in our fuzzy robes.  Even when he put on my necklace with Ty's locket and wanted it open so he could talk to Ty, I didn't get teary-eyed.  I liked watching him try to interact with his brother (until he got a little too rough with the locket and I almost freaked out!).  I did feel bad when he said "but he's not talking back to me," and I told him I wished he could talk back to all of us, but not to worry because he is always with us and listening to us and telling us things in his new and special way.  Gavin doesn't really get that - of course - but he seems okay with those kinds of explanations, which is a blessing.


How can I begin to thank you all for the constant flow of photos today.  All of your efforts in support of Stand Up to Cancer were outstanding.  My phone started firing up around noon today and I swear it hasn't stopped since.  I just heard the new message alert twice while writing the previous sentence alone!  Make that three times because it just went off again!  I have seen probably over 100 SU2C signs that honored Ty, TLC, SuperTy, Ty Louis Campbell and all of the kids!  We are all so blessed to have such incredible support and we can't thank you enough.  That simple gesture of taking a photo with a placard means so very much.  It really does.  So... thank you. 

http://www.thetlcfoundation.org/

I am happy to share with you the link to our new website.  I am still trying to track down some login information for the superty.org URL - which will also have a new look where you can easily access the blog, the foundation or the muddy puddles project - but until them I'm so happy to show you the website specifically designed for the foundation.  The most important element is everywhere, and that is simply Ty.  His smile is on almost every page because we always want to remember who started all of this and why we are doing what we are doing.   Heck, he is in the logo! 

I did not do this alone.  I had several people helping every step of the way.  First, the logo designer.  She is a mom in Georgia who offered to help and she has blown me away with her incredible designs for both the foundation and the Muddy Puddles Project.  Then, there is the website team.  Namely, a friend who I've never met named George.  He took our vision for the website and made it everything we hoped for and more.  Last, my friends, foundation volunteers and colleagues who helped to proofread and test the site along the way.  THANK YOU.

There is still time to nominate me as an unstoppable mom contest on the Kelly and Mike show(humble as I want to be, I also really want to get on this show to spread awareness so I'm just going for it... that's it... pick me for unstoppable mom!).  In addition, there is another contest with Self Magazine for "Women Doing Good."  For those of you who saved your written nominations for unstoppable mom, please consider repurposing them for this contest as well. 

http://womendoinggood.selfconnected.com/entry.php

Address: 91 Gleneida Ave, Carmel, NY 10512
DOB: 10/1/1975
email:tylouiscampbell@gmail.com
Phone#:this number has been specifically set up for this contest please do not call: 845-204-5447


We can't stop trying because every little ounce of mainstream exposure like this, every donation won, can make such a big difference.  Thanks everyone!

Sunday, February 3, 2013

Stand up to cancer: World Cancer Day

Tomorrow is Stand Up 2 Cancer World Cancer Day. I will be posting some pictures of Gavin, Lou and I standing up for Ty and all the kids. Please help us to support this social media campaign by printing out a placard and posting a picture on Facebook, Twitter, Instagram, etc. Go to http://wcd2013.su2c.org/ to get your own placard, then post your photo EVERYWHERE to help spread the word! Just follow Gavin's lead! (Wow, I'm just realizing how badly he needs a haircut).


The foundation website launch got sidetracked a bit because Gavin came down with a terrible cold/fever.  We are all a little under the weather and will have to stay home tomorrow, too.  My cousin came over to spend the day with us today and when Gavin became quiet in the toy room, I peeked around the corner and found him fast asleep on top of his toybox.  Poor baby!  His has his tiny Captain America lego guy nice and close.  So sweet.



This is the first time Lou and I had a very sick boy in bed between us since October.  It was so hard to hear Gavin coughing and having trouble breathing for so many obvious reasons.  It took us back to the countless nights of constant worry over Ty.  We were up all night giving Gavin medicine, checking his temperature, snuggling him and saying soft "I love you's" in his ear.  I'm so glad that he began sleeping with us shortly after losing Ty.  Every night at some point, he makes his way from his bed into ours.  Sometimes I wake up in the morning, unable to remember when or how he got up in our bed because it's become so routine.  He has only slept through the night without making this migration once in three months, and when he woke me in the morning he was just as surprised as I was. 

Yesterday, I was in the kitchen when I overheard Lou tell Gavin, "I want to do something today, what should we do?"  Gavin answered, "I want to go to heaven and see Ty!" with excitement.  Wow.  Lucky for Lou and I, he jumped off the couch where Lou was sitting and went into his little toy room so he didn't see our silent tears start flowing.  After a short while, I choked them back and I asked Gavin if her remembered what I told him about Ty... if he remembered that Ty was very sick so God decided to take Ty to heaven early?  That we all will go there when we got old, but Ty got to go there sooner.  Gavin said "am I gonna see Ty in heaven when I am old?"  I do think he is beginning to understand, but I was surprised by all of the questions yesterday. 

Later in the day, Gavin was getting speech therapy by the same lovely person who used to provide those services for Ty.  He was excited and telling her all about Iron Man.  He talked about how Santa Clause brought him a new Iron Man costume, and how Iron Man has repulsors, and how Iron Man has that thing that lights up in between his "ninnies".  How cute.  I told him, "that's his heart, Gavin.  The light in his chest is his heart."  He heard me and he told his teacher, "Yes, iron man has a light in his heart just like I have Ty in my heart."  I guess it's not just Lou and I.  Gavin must be thinking about and missing Ty a lot more than we realize.  It took every ounce of my being to nod and acknowledge that yes, Ty is in his heart, without breaking down and crying a river.  I totally held it together.  I was very proud of myself for that.

Ever since we lost Ty, I have been seeing him out of the corner of my eye.  When he first died, I kept hearing his toddler footsteps and seeing my curly haired baby.  Over the past week or so, those visions have transitioned to one when he is older, but before he became paralyzed.  I see him getting so healthy and scooting all around the house.  I remember the bald spot at the bottom of his head after he completed radiation.  How soft and warm his head always felt.  I would examine and kiss the scars there all night long while he slept beside me.  These were the best days of my life. 


Today I was talking to him while driving, reaching behind me for his foot but hitting only the carseat.  Telling him that I want to trade the pain of losing him for the pain of caring for him and watching him hurt, because I would also get to see his magnetic smile that could spread joy around the world.  I wish my whole body was still hurting from being his arms and legs for so long.  I wish I was filled with worry and anxiety that caused psoriasis and TMJ, because it's so much better than the pain of this void and this longing.  I would embrace that pain and welcome it with open arms.  It doesn't even compare with the pain I now carry in my heart. 

I received an awesome gift in the mail.  It included photos that were taken two summers ago, when Ty had just started improving.   Pictures of Ty that I've never seen are the greatest gift anyone can give me. 


Whoops!  I can't seem to fix this.  Sorry!  You get the idea, though.  He's adorable (not to mention his Papa and Daddy are very handsome, too).  I miss him so much with every passing minute.  But we are doing well and so many wonderful things are happening in his honor - as they should be.  I feel him with me all the time, and I know he is happy. 

Friday, February 1, 2013

We're okay

I just want to post a quick update because I don't want anyone to worry.  I am okay, we are all okay.  I don't think I've ever gone this long without writing, though, and I can actually feel the tension getting worse by the day because of it.  Writing has always been my release and I haven't been able to keep up so I wanted to at least tell you why (it's all good).

So much has happened this week, and so many times I was compelled to write but I've been restricted because of foundation priorities.

It's been an exciting week.  The biggest news will be the launch of the website for the foundation tomorrow.  Once that goes live, you'll see that we have a new landing page for superty.org.  It will still be a clear link to the blog, but there will also be an access link to the TLC Foundation and the Muddy Puddles Project (the website for which is still in the works). 

So, that was just a lot of work and I was bogged down all week. We are also looking to secure a venue for our first big muddy puddles event (when the weather warms up),  and I am so excited for the way things are coming together. 

My alma-mater, Marist College, has also helped me to secure four new interns and I am so happy to have them on board!  Over the next few months, they will help me become more active on Twitter (follow @supertycampbell) and solicit more attention from the media. 

Tonight we had a brainstorm meeting with about 30 people that I once worked with throughout my career in public relations.  Names and faces that I haven't seen, some in 10 years or more!  All of these amazing individuals offered their time and expertise to talk about Ty's Foundation and childhood cancer awareness in general.  So many amazing ideas were shared.  So much love in that room.  I feel we are going to achieve so much in honor of Ty, and I am so humbled by the contributions from this group of friends.  I feel so lucky and so blessed, and I know Ty is proud.  I can't wait to see us all make great things happen in his honor. 


I love those big green eyes. 

Ty was such an amazing little boy.  If he survived this disgusting disease, I just know that he would have led an amazing life that inspired others.  Even in his death, I expect his story to continue inspiring others for a lifetime.  The lifetime he should have been allowed to experience.  Tonight I was reminded just how powerful one little boy can be.  He was my superhero.  It's not fair that he was so young.  When I was getting ready to head into the city today, I thought to myself, "if I can meet one little boy like Ty, who beats cancer because of new treatments unveiled over the next decade or so, I will have answered my calling."  For Ty, we will dedicate our lives to trying to save more children. 

It can happen to any kid.  Ty was not predisposed.  There were no environmental factors that we know of.  It doesn't run in our family.  It just happened.  In the blink of an eye, our lives changed forever.  I pray for the day that we find effective ways to treat cancer and to give kids their lives back without robbing them of their childhood. 

Gavin has been doing great.  He has been so mushy lately, and I just relish in it.  You all know I can't hug him enough, so I am loving the fact that he wants to snuggle and he tells me "I love you" twenty times a day.  He is my entire reason for living, and he makes me genuinely happy even during my saddest of days.  Thank you Gavin.  Today he told me that he is my big boy and I just tell him "No, you are my baby.  And you will always be my baby no matter how big you get!"  I have a picture of Ty in this same hat.  Isn't it amazing how much time has passed?  Ty was younger than Gavin here.  He was three and four months, Gavin is three and nine months now.  :)  Notice Ty's slightly blue lips!  This is where it all began :)  After his second round of chemo, his love for candy emerged.  Missing him big huge much.