Monday, October 29, 2012

Ty is everywhere

I'm so grateful for this blog for so many reasons.  Most importantly, because Ty's story is making an impact in spreading awareness for pediatric cancer.  Second, because your comments and messages have literally saved me and Lou during our darkest days.  And finally, because it helps us to look back and remember all of the wonderful things we did from day-to-day with Ty.  Ty was a gift to all of us. He was my greatest gift, and I am so happy I shared him with you (and can continue to do so). Every single thing that came his way, he handled with such courage and I am just so proud. 

As most of you know, we are waiting for a huge storm here in the Northeast.  The threatening news began blasting out everywhere as early as Friday, but I think it is being over dramatized in the news.  It seems when we are most prepared (Hurricane Irene) the results aren't so bad, but when we least expect it (Snow-tober 2011) we are buried in snow and without power for a week.  Last Halloween we greeted trick-or-treaters by candlelight.  I threw two gallons of milk and a slab of my favorite cheese in the snow outside our sliding doors and it kept us going all week (if I didn't save the cheese, how could I enjoy the obligatory bottle of wine that goes hand-in-hand with candlelight, a blanket and a fire).  It was crazy.  Look how much snow was on our barbecue out back on Oct. 30!

No snow is predicted, but the rain and winds are supposed to be substantial.  To be honest, I'm not dreading it.  A power outage doesn't seem that bad right now.  I think I will embrace it for a day or two until I start really missing a shower.  I will enjoy remembering what it was like living without TV and such for five days last year before we finally retreated to my mother's house on LI.  We had so much quality time with Ty and Gavin.  I can picture them right now, wrapped in blankets, all of us snuggling and reading books.

It was just before the snowstorm last year that we took Ty and Gavin on their first and only hike.  It was my favorite kind of day - crisp fall air with tons of sunshine (just like the day Ty died) - and we were walking through a beautiful trail up to what is called "the dragon's cave".  Ty was reciting from our favorite book "We're Going on a Bear Hunt" and he carried the class pet with him (Spot - a stuffed dog).  It was a special day.

In front of the Dragon's Cave
We were so hopeful that Ty would be back on his feet come Spring.  Instead, Ty wasn't able to enjoy the outdoors much this past Spring and Summer (although every detail from those days in the pool are forever etched in my heart).  Lou and I love the outdoors so yesterday we dropped everything and took Gavin out for a hike before the storm.  Along the way, I kept thinking about what a nice time we were having and how much Gavin was enjoying it.  I was sad that Ty wasn't able to experience it the same way, and I was also sad that it had been so long before we were able to take Gavin on such an adventure.  I'm so glad we did it yesterday.  All I had planned for my depressing day was a trip to the dollar store, but Lou insisted we get outside instead and it was so therapeutic for all of us. 

We were the only people for miles and I enjoyed our alone time so much.  When we first started marching through the leaves, I was focused on watching Gavin ahead of me.  A couple of times my eyes were diverted to falling leaves.  They were so beautiful.  It reminded me of the day after Ty died, when I sat in our yard wrapped in monster blankie and talked to Ty as tons of leaves fell all around me (cried, really, whatever I was saying out loud was incomprehensible).  At that moment I said out loud, "I see you in every falling leaf, angel baby.  I miss you so much."  I felt okay - at peace and almost happy.  I felt like Ty was with us on that beautiful day.  I was enjoying the hike and my private time with Lou and Gavin.  On our way back, we tossed some rocks into a stream and out of nowhere I started getting choked up when Gavin threw one stone for every member of the family - of course, including Ty.  I hated that I was getting sad but I couldn't control it.  I was imagining how if I was holding Ty I would be helping him lift his arm and "throw" his own rock into the stream.  Then, as we were getting closer to the end of the trail I realized that I hadn't seen a leaf fall for a while.  I started to panic.  When we got to the car, still no leaves, I told Lou "wait, I just need a minute."  I turned to look back on the trail with thousands of trees that were filled with leaves ready to drop.  I waited a long time.  Not one leaf fell.  I was sad.

I decided that there is meaning in the entire hiking experience.  I think Ty was there with us for a long time.  When I felt at peace and when the leaves were falling.  I think I became sad because Ty's visit ended after we tossed his rock into the stream.  The leaves stopped because Ty stopped sending them.  Looking back, I like to imagine that he was having a nice time with us, but ran off to enjoy his new friends on another exciting adventure before we finished our hike. I hope you don't think my ideas are desperate.  I don't ever want to feel like I am stretching for a connection with my son.  Maybe I am, but regardless it helps me cope.  I know that Ty is all around us - everywhere.  I can't explain why I'm so sure, but I am absolutely, positively certain of it. 

Look at this picture that my niece took last night.  She was sitting around a campfire and she snapped off a couple of pictures.  She didn't see anything special in the fire at all, she was just goofing around.  Two photos in a row showed the same exact image.  When does an image of a fire stay still for two different photos?  This is what she captured. That angel is magic from heaven above. 

On a totally unrelated note, please don't worry about Gavin.  I know any of your concerned comments about him are kind and sincere and I want to reassure you that he is a very happy little boy and we enjoy him immensely.  Believe me, I love him as much as I love Ty, I always have, but this has always been a blog focused on Ty's cancer journey where I share my most honest feelings about fear and grief and the horrors of childhood cancer.  Gavin was often sheltered from those intense experiences.

On an even more unrelated note, I want to mention an incident from this afternoon just because it's weighing on my mind and I use this forum as an outlet for just about anything...

I ran an errand in town, something I haven't done for days.  Because of the impending storm, the stores, parking lots and roads were totally jam-packed.  It was totally crazy and it was a mistake for me to think I could run a simple errand when the whole town is in panic mode.  Anyway, I was pulling out from a parking lot where there is no traffic light, and I had to make a left across two lanes.  Tons of cars were coming in both directions and after waiting for just 30 seconds the man in the car behind me began beeping and inching forward.  He proceeded to beep at me four times in under 10 seconds.  I can't tell you how nervous and upset that made me because it was so incredibly unnecessary.  He wanted me to just pull out in front of the cars because they were moving slow enough, but I didn't feel comfortable doing that until there is an opening in the traffic coming in the other direction.  I am not a bad driver, I swear!  His behavior was an example of the sheer impatience that people show toward others when there is any sort of threat.  I wanted to yell out the window about how dangerous it is to bully someone on the road like that.  How my son just died and how insensitive his bad attitude was (which is totally irrelevant, but I just have this urge to tell everyone who is rude or angry that my son died last week just to give them some perspective).  So we might get a lot of rain, calm down and don't cause a dangerous situation for others.  Instead, all I could muster out my window was "asshole!"  I hate that.  I was never good at getting the right words out when I get upset. 

I don't want to get in a discussion about road rage or anything.  I was just sharing that story because it's still on my mind, which probably means I'm not ready to reintroduce myself to the realities of society just yet ;)  I should just embrace the storm.  Here's to a couple of quiet nights without power, snuggling on the couch with my family!!  Goodnight all.  XOXO.

Saturday, October 27, 2012

I miss my aching back

I would take my aching back over my aching heart any day.  When I say that Ty and I were so attached to one another, that bond between us was as physical as it was emotional.  He was part of my body when he came into this world, I held him in my arms and never wanted to put him down during his healthiest of days, and once cancer took over he became so disabled that he was literally part of my own body again.  He was just an extension of me - and I loved feeling so close to him.  It was my way of feeling like I was doing everything in my power to help him and protect him. 

I'm so so so so sorry I couldn't save him.  My baby.  I can't believe my love, faith and devotion wasn't enough to protect him.  That all of our thousands of prayers wasn't enough.  That his fighting spirit and unbreakable smile wasn't enough.  Even after the most difficult surgeries, this boy came out smiling.  How can he fight so hard and not get through this?  The only solace I find is knowing that he is finally free from a future of monthly MRIs, weekly needles, surgeries, headaches, countless therapies and potential relapse.  No more! HE IS FREE!

Do you remember this?  This was taken the minute after he woke from his second major craniotomy.  See that smile?  He's outrageous.  Stronger than anyone I know. 

I never, ever went anywhere without Ty.  I would never expect anyone else, other than Lou, to understand how to hold him without hurting him so I did it all.  Mely was great with him, so great, but still it was me who insisted on carrying him everywhere.  It was my back that burned every minute of every day due to the unnatural strain of carrying Ty's extra weight on my hip.  I wouldn't trade it for anything in the world.  Certainly not for the broken heart that pains me now, instead.  Or these pathetic, empty arms.  I feel so lost and so useless.  I know I have Gavin, I do, but I am emerging from a world of cancer where my time was so consumed by Ty and I'm finding that Gavin is a very independent big boy now.  He goes to school every day until 2PM.  What am I going to do with myself when he is off at school?  Or when he plays with his puzzles and super heroes for hours on end all by himself (he has transitioned from Toy Story to Super Heroes after Ty passed away, which makes me happy because I feel he is trying to fill Ty's shoes and remember him by embracing Ty's favorite things). 

Well, I promise you this.  I'm not going to sleep all day.  I tried, and I am simply incapable.  I'm not going to look through pictures and cry all day every day (although I can't say that doesn't happen late night).  I'm not going to clean my house on a rampage and get rid of all the reminders of our previous life.  I promise.  I am going to take it one day at a time, and I am going to fill my time by throwing myself into the cause.  You will see a lot happening with his foundation in the weeks to come, and I am excited to give that gift to Ty.  To make sure that his story lives on so that the little boy with the infectious smile can continue to impact the lives of thousands.  He fought so hard, he deserves to be honored in a big way.  A way that represents everything that Ty was all about.  A way that celebrates the beauty of childhood and leverages that message to rally for better treatment options for our kids.

And we're going to have to buy him an urn!  It's such a difficult decision, but I can't stand looking at the can on my dresser anymore with a label that reads "temporary receptacle."  Doesn't that sound so insensitive considering my precious baby is inside there?  Still, I run my fingers across it and I smile when I pass by the lonely blue lollipop that sits on top.  I'm happy he is here in my bedroom with me. I light a candle by his picture every night, too, and it helps me feel closer to him.  I saved this picture to post a while ago and just came across it.  It was taken on October 11 and he looks very heavenly to me.  In fact, all of his photos since we were sent home on September 17 have a very different beauty about them.  It's hard to explain, but it's like Ty was starting to move in between worlds and he knew more than we can understand right now.  That FACE!  I miss it so much.  I want to slide my hand across his cheek more than you can imagine.  Kiss those lips.  But most of all, I want to talk to him.  I wish I had a more memorable conversation with him before he fell unconscious and then passed away. 

I wrote his obituary yesterday, but I keep getting sidetracked and I haven't had it published.  I expected it would be much harder to do, but it really wasn't.  In a nutshell, I think it is the right way to present the news of his passing.  It feels good to have this task behind me.  Reading it makes me so proud of him.  Here is an abridged version below, I hope you like it too.  Goodnight and have a great weekend.

Ty Louis Campbell

10.4.2007 – 10.17.2012

We call him SuperTy because he was our little fighter.  Ty Louis Campbell, the “best good boy in the whole wide world,” graced this earth for five beautiful years, and before he left he made it a better place to live.  He made an astounding impact on all who heard his story.   He inspired a community of thousands to make the most of their lives and to rally against the evils of childhood cancer by raising awareness. 
Ty was astoundingly beautiful and always quick to smile.  His sheer magnetism developed not because of the cancer that controlled him, but rather his love for life that defined him. 
Ty is the son of Louis and Cindy Campbell, and older brother to Gavin.  He is grandson to James and Carol Campbell of Mahopac, NY and John and Christina Zimba of Wantagh, NY.  He is loved by many cousins and countless friends.  During his two-year battle with brain cancer, his bravery and perseverance in the face of countless setbacks taught the world to celebrate kids being kids in honor of those that can’t.


Friday, October 26, 2012

Who will put the love in my coffee??

Every morning, I make coffee.  I am completely in love with my morning cup (or three), and I don't know how I could start the day without it.   But since Ty died, I have had a very hard time making my coffee in the morning.  And, every day it tastes absolutely terrible.  Gross, in fact.  I might have to go out for coffee in the morning from now on...
Since we moved to Pawling, three months after his original cancer diagnosis, Ty and I started a coffee ritual.  Ty's legs were so weak but his upper body was strong (at the time), so I often let him sit on the counter in our new kitchen so I could do what I needed to do without him feeling left out - not even for one second.  One of the most important of which was making coffee.  Ty and me, we were two peas in a pod.  We did EVERYTHING together.  I can't tell you how lonely I am now.  For the first time in so long, I am having a hard time explaining my grief.  I don't even understand it myself.  I can go hours and hours thinking I'm just fine, and then it hits me like a swift kick to the ribs out of nowhere.  The simplest things can trigger it at any time, and God does it hurt.  So much. 
Here he is, my Ty, helping me in the kitchen. 
I always liked to tell Ty that he was putting the love in my coffee (or as Ty would say, "putting the wub in my coffee.")  When he was strong enough, he helped me scoop the coffee into the coffee pot and flip the "on" switch.  When he got too weak to sit on the counter and help make the coffee, I would pour a cup and bring it over to him on the couch so he could help pour the milk and sugar in it (the "wub").  When that became too clumsy for him to help with, I would bring my coffee over with a spoon so he could add the love by stirring.  And when he wasn't able to stir anymore, even with my help, I had him blow on my coffee so I could have some "wub" in my coffee.  He never let me get a cup without it.  It's the same with cuddling up at night.  I don't think there was a night where I didn't hear him whisper, at one point or another, "I want to snuggle you!"  God, I was the luckiest woman alive.
Ty on the counter in Daddy's hat, with Blue Lollipop lips, January 2011

Now I'm left to wonder... what is my future going to be like without Ty in it?  I can't stop looking for him everywhere.  Especially on the couch.  This damn couch that we bought for him when we moved here.  I wish I couldn't sit in his spot like I am right now, because I wish he was here instead.  I wish I didn't have so much room in my bed at night.  I wish I didn't look in my rearview mirror and see Gavin instead of Ty.  I guess I should be embarrassed to say it, but it's TRUE.  I don't love Gavin less, but Gavin used to sit in the car seat behind me, and Ty was always diagonally across so I could see him the easiest.  It's not fair for Gavin, when you consider that he is the youngest and otherwise more worthy of my attention in that regard, but when Ty got sick all of that changed.  Like a screetching record.  Everything normal became abnomal.  Everything happy became a sad reminder of the truth that was our lives. 
What is our future as a family going to look like?  What should I do with all of Ty's amazing "stuff."  What do we do with his bedroom?  Who will hang the first ornament on the Christmas tree this year?  Oh, God, Christmas is going to be pure hell.  Ty has hung the first ornament on our tree since the day he was born.  How will we ever survive that holidays?
Ty helping place the first ornament, December 2010
I don't even have the heart to let Gavin wear half of Ty's clothes.  Do you know how hard it is to put one of Ty's shirts on Gavin now that he fits into them?  It's torture.  I'm trying so hard to be practical and normal about this, but there is nothing normal about a five year old boy dying.  I just can't do the right thing for poor Gavin because it all makes me so sad.  But, how much stuff can a person save.  I have boxes and boxes and boxes.  When is enough enough?  I think probably never.

Before I allow myself that pity party, though, I should tell you that Gavin is doing so well.  Thank God for his school where he is doing so many fun things (like pumpking picking with Grandma and his class)!

My biggest fear is that Gavin expects Ty to come home.  Ty spent so much time in the hospital over the years, that there are times I worry Gavin just thinks he is away for a while.  We tell him all about how Ty is with God in heaven, but still, how much can a three-year-old boy understand.  Today he pooped on the potty and told me he wanted to save it for Ty so he could see it when he got home.  Heart... Spoon.... This happens a lot.  But it's only been a week, of course we need to give Gavin time.  He's just a baby. 
There are two other things that happened with Gavin worth mentioning.  First, on the day Ty died, Gavin TOTALLY knew something very sad was happening.  I came downstairs early in the day because I heard him in absolute hysterics.  Poppa told me that he mildly scolded Gavin (and it was justified, of course), but barely in a way that should cause him to react so dramatically.  Gavin could not get a hold of himself.  I'm telling you he was crying so hard he couldn't catch his breath.  I just scooped him up, and rocked him, and I told him "it's okay, I feel the same way.  Sometimes you can just be sad.  I feel the same way, today." That -- in an nutshell -- comforted him completely. 
The other thing that has happened is that Gavin refuses to say his prayers at night.  Isn't that weird?  He gets upset with me every night and tells me he doesn't want to say prayers!  I try to convine him to do a shorter prayer than the usual and he still says no.  Then I ask him if we can just say goodnight to Ty, and goodnight to God, and he always says okay to that.  Kids are so much more intuitive than we realize.  There is so much going on in that little head of his, I am proud to be his mommy.  I hope he will be okay.  I know he must be so upset over Ty, he just doesn't know how to express it.

The last time we bathed Ty -- after he died -- I had taken off all of my jewelry because I wanted to be so incredibly gentle with him.  I hadn't done that since he and Gavin were tiny infants, and it was as if I was coming full circle.  Before that, I was wearing so many religious and "good luck" bracelets... it's like they were all part of the healing ritual for Ty.  Now that he's gone, I can't bring myself to put that jewelry back on.  I can't bring myself to even say the "Hail Mary" because I changed the last verse to pray for "Ty's healing" instead of "Our Sinners" and I get so mixed up now.  The funny part is that when we had a family prayer at our home during the first prayer chain for Ty, I heard my mom saying the Hail Mary with the group, and she had habitually changed the ending to address Ty as well.  Like mother, like daughter. 

Our prayers didn't keep Ty here on earth with us... but I do feel the power of prayer helping me get through the toughest days of my entire life.  I've said it before and I'll say it again... "people are good and kind."  God help us. 

good night, Ty

Tuesday, October 23, 2012

Gold Lights, Ladybugs and Signs in the Sky

Yesterday was the first time Lou and I really emerged from our house of sadness, and I am so happy we did.  First we attended a local dedication to Ty at Pawling's "Socktoberfest" soccer tournament, where Ty received a gold jersey from the soccer club and his number - number one - will forever be "retired" just for him.

Later that day we met up with over a hundred people in Poughkeepsie for a candle lighting ceremony.  I don't know how she pulled it off, but in less than a week's time Lou's cousin Renee arranged for the Mid-Hudson Bridge to be lit in gold lights to spread awareness for pediatric cancer in honor of Ty.  It couldn't have been a more beautiful night, and I felt Ty everywhere.  Thank you so much for all of you who came out to light a candle for Ty, and thank you so much to Julia who sang so beautifully - it was wonderful and my whole family was so touched by the tribute.  Ty's amazing nurse from MSKCC, Sue, travelled so far to see us and she was my greatest surprise (thank you).  A newsclip from the event is posted on YouTube here

I had to give Gavin a bath tonight, and the tub in his bathroom is clogged since a spiderman head escaped down the drain.  I gave him a bath in my tub, and it was so hard at first.  I removed Ty's bath chair that has been there for months, knowing we won't ever need it again.  The same chair we bathed him in on Wednesday.  When Gavin saw that he was going to be allowed in my tub, he immediately opened my cabinet and pulled out the bath toy that Ty loved... it is a Hot Wheels set with ramps and cars that change colors.  Gavin was there the last time Ty ever had that toy in the tub with him just weeks ago (we never let Ty feel like he couldn't play with his toys - I would hold his hand and the cars and make pretend he was doing it himself).  I was happy that he remembered and wanted to play with it, but it was very hard to resist pulling it away and screaming "No, that's TY'S TOY" just because my heart is so broken.  It hurts Lou and I to watch Gavin playing with all of Ty's toys happily and without any hesitation. 

During the bath, I was lost in silence while Gavin played.  For days the only memories of Ty that consumed my mind were his last breaths, his cold body in my bed and the vision of the door closing after his casket was rolled into the crematorium.  I try to keep so busy with conversation and cleaning around the house just to avoid these thoughts.  Nighttime is the worst.  I mention this because I finally experienced a beautiful moment while Gavin was in the bath tonight.  I snapped out of my haze when I imagined Ty's laughter.  Then I saw him in the tub next to Gavin.  I imagined him watching his brother and telling me that Gaga is a "woon-a-tick" (lunatic).  He was sitting up independently, lifting his arms and enjoying a bath like a healthy, able-bodied five-year-old.  When I pulled the plug to drain the tub, I heard Ty's voice cry "Ga-GAAAAA!" when Gavin tried to sneak and put it back in (he was always telling on his little brother).  I hadn't been able to hear his voice for days and I was so afraid it wouldn't come back to me.  Thank you so much, Ty, for coming back to me tonight.  I loved seeing you at bathtime. 

Punk Rock Ty, October 13th, post-bath

The first thing I did after we returned home without Ty on Thursday was open the sliding doors to my backyard because it was so beautiful outside.  I was greeted by hundreds of ladybugs on the doors, the windows, even inside my house.  This has happened before, and every time it has been when something significant with Ty happened (i.e. when we returned home from the hospital after his craniotomy and after he suffered paralysis overnight as a result of post-radiation effect).  Ladybugs are said to symbolize good luck, and much more.  I carried a "lucky lady bug" in my pocket that was gifted to Ty over a year ago and another one always sat on the shelf above his bed.  I googled it to find that there are so many people who have posted about instances where ladybugs appear after a loved one dies.

When I was about seven, my cousin died suddenly.  She was only eight or nine years old herself.  My mother always comforted me with a story about when her mommy and daddy came home after her funeral, my little cousin's backyard was filled with ladybugs.  They were all over the window screens in her kitchen and all over her play set.  I realize that ladybugs have a short life cycle and that it is not uncommon to experience sudden infestations, but I believe that the timing of these occurrences are of a very spiritual nature.  Some of the things I've read that made me smile include:
  • Because the life of the adult ladybug is short, it teaches us how to release worries and enjoy our lives to the fullest.  When a ladybug appears in our life it is telling us to "let go and let God."
  • The name lady bug finds its origins in the middle ages when this beetle was dedicated to the Virgin Mary and called the "beetle of our lady" and the insect is said to hold a link to mothers. 
  • Ladybugs are very visible, unlike most insects that are camouflaged from predators.  In spite of the ladybug's size, it appears to be fearless. 
  • Seen often as a messenger of promise, the ladybug reconnects us with the joy of living.
  • Ladybugs teach us how to restore our trust and faith in the eternal life of one's spirit.

The sky has been filled with messages from Ty as well.  On the night he died, I was sent the following two photos from neighbors who were on their way to a prayer vigil in his honor.  I have also had a number of photos and people writing to tell me they are seeing angel wings in the sky. 

This cloud was over our house just after Ty passed away and reminds us of a hawk, flying free

Over the church, a rainbow appeared through a hole in the clouds that same evening

The greatest message in the sky will be taking place tomorrow.  Ty's "Aunt Mary" from the Guardian Brain Foundation has arranged for an airsign in the sky over Pawling at 2PM.  This will be such an incredible gift.  The plane will be flying right over our house tomorrow and all over town in his honor.  Mary, you have never stopped giving our family beautiful memories.  Thank you.  I can't wait to share pictures!

Monday, October 22, 2012

SuperTy will do amazing things

I said in the last post that Ty's story is far from over.  I will continue to write about him indefinitely, and I hope you will all continue to share his story and invite others to follow his journey, even now.  Ty's courageous battle and unbreakable smile has made a powerful impact on so many people around the world, and I truly believe that this is only the beginning.  I will never get tired of hearing people tell me how much my little boy means to them.  How much his story has given them perspective. 

There have been so many beautiful, wonderful comments over the past week.  They bring me to tears in a very good way.  I have so much catching up to do, but I promise I do read them and I thank you all for sharing.  

I used to spend the nights lying in bed next to Ty, listening to his breathing with a mind so consumed with worry that I would eventually have to get out of bed and start typing.  Maintaining this blog has always been therapeutic for me.  I thought after he died that I would just fall into a deep depression and sleep for days on end.  I am finding that instead I lay in bed missing his warmth so much, that I barely sleep at all.  I can't tell you what it is like to go to bed at night.  The quiet has always been the worst for me.  It's when my mind is the most frantic. 

Tonight I can't stop reliving everything about the day Ty died.  How his body changed over the 18 hours that he stayed with us afterward. What it was like to spend the night with him in our bed one last time.  How cold he was when I kissed his cheeks and his lips the next morning.  The visions are so vivid and I hope I remember them always. Ty was in the bedroom with us the entire time.  I watched him die so peacefully in my arms, but I promise you I never felt him leave.  He was watching us as we bathed and dressed him.  I do believe he heard me when I read him some of his favorite books in the middle of the night.  When the coroner came with his casket the next morning, Daddy made Ty "all comfy in his bed" which is what he would have wanted because he always said daddy does it best.  We didn't put shoes on him, instead we sprinkled salt water over his toes and covered his feet in sand from Long Beach so he could always feel the sand between his toes.  That was his favorite place to be before he got so sick.  We placed pictures of his favorite people all around him and we made sure he brought some of his most favorite things with him, including candy, captain america, Max & Ruby DVDs, his seashell and a toy catalog.  Lou and I also wrote him a letter each and placed them with Ty so he could carry our words with him. 

I recently read a book, Snow Flower and the Secret Fan, where the women in 19th century China would traditionally burn one's lifetime collection of letters that were exchanged among their closest of friends, essentially letters that tell the story of their life, during a funeral.  The belief is so that the deceased can share his or her story in the afterworld.  Ty, of course, didn't write anything in his five short years, so Lou and I decided to each write him a letter instead and we included those letters to be cremated with Ty.  I hope he carries my words with him in his heart.


To say that I love you is inadequate.  I am enamored with you.  I had no idea how incomplete my life was without you in it, until I saw you for the first time.  Even during your sickest days, every minute with you filled me with love and purpose. 
You made me see sheer beauty in all that is silly and ridiculous.  That will never go away.
I think I love you more than I love God Himself.  I loved God all my life, but never felt love like the way I love you until I held you in my arms.  I love my parents, I love your daddy, I love my sister and brother.  But the way I love you and Gavin, a mother’s love, is something that can’t be put into words. 
I can’t believe it’s been two years since we have started on this journey.  Two years that felt like a lifetime.  Two years that felt like the blink of an eye, too.  I can’t think straight, I suffer headaches, my back hurts and I cry all the time.  But that is nothing compared to what you have endured every single day.  And you are only five years old.  It’s so unfair, and so cruel.  I hope someday it won’t be like this for other children.  I pray for a cure and I believe your story will help us come closer to making that a reality.  You are amazing in every way. 
Cancer took away your ability to run and jump, then to walk, then to sit, then to eat.  But it never, ever took away your ability to be a kid.  To laugh and be happy and have fun.  You had a love for life that no one can understand unless they knew you.  It hurts me to think that someone so pure, sweet and innocent as you can have all the joys of life taken from him, when there are so many others who don’t appreciate their own lives, their families, the healthy bodies they live in.  But then I realize that maybe you found so much joy in your five years with us, despite your suffering, because you always knew your life would be short. 
We have been praying for a miracle all of this time.  Now, as I write you this letter watching over your still body, I realize that you alone were already a miracle. 
I can’t kiss you enough.  I can’t hear your laugh enough.  I am going to miss you beyond comprehension.  Thank you so much for letting me be your Mommy.  I am the luckiest person in the world because you were mine.  I love you super, duper, big, HUGE much. 
My broken heart will never stop bleeding for you,
Lou and I were able to help bring the casket out to the car, ride with Ty all the way to the cemetery, roll his casket into the machine and Lou was given permission to turn the switch.  It took so much restraint not to try and climb in there with him.  Lou and I both would have been more than happy to go with Ty.  Instead we waited and watched as the various lights had to warm up and turn on. I imagined Ty's casket starting to burn, then flames invading his body that was laying in there in his perfect white suit. As horrific as those thoughts were, I also felt deep inside of me that this was the last step in Ty becoming truly free from his body.  I found comfort imagining his cancerous tumors dying in the flames. 

We took his ashes home and he is  back in our bedroom with us, but I don't think there is a connection between his spirit and his remains.  I will have jewelry made so I can always carry some of him with me close to my heart, but I believe that it is more for me... not for him.  He is soaring so high!  He is in and out of this house.  I talk to him all day long and I feel like sometimes he hears me and sometimes he doesn't.  I don't know.  This is all so new to me I'm not quite sure what I'm feeling other than the easily recognizable emotions like sad, lonely and stressed.  I miss him so much.  I pray that he comes to me in my dreams and one of my biggest fears is that he won't!  I need to see him.  I need him to come to me in my dreams.  I guess I have to learn to sleep again, first, before getting all worked up over this!  :)

I have to cut this short because it is so late, but I have so much to share from the events over the past couple of days.  Hopefully I will be able to get a holf of some pictures to post, too.  There are still amazing things taking place in honor of Ty and we feel so blessed! Thank you to all those involved. 

Ty and Gavin July 2010 (one month before diagnosis)

Thursday, October 18, 2012

Our baby is finally free. Rest in peace Ty Louis Campbell.

Ty Louis Campbell is gone, but his story continues.  This is our promise to him.  His impact on the world around him gives his short but inspirational life such meaning.  His soaring spirit will continue to fuel a fire in our hearts, and strangers around the world will continue to fall in love with the little boy who fought so valiantly.  The little boy who hurt so much, but maintained a bigger, brighter smile than the healthiest of children. 

Ty never did break his fever.  He never really woke up.  Not until he decided to leave this earth and fly freely among the clouds.  At that very moment, he was awake.  He had returned to Lou and I to say goodbye.  To say our hearts are broken would be like saying it tickles to have your stomach ripped open with a spoon. 

I went to bed last night with so much worry on my mind, but I was able to fall asleep because I was calmed by the fact that in his semi-conscious state, Ty seemed so incredibly peaceful and comfortable.  I laid down next to him, I put his arms around my neck, and I fell asleep to the sound of his soft, garbled breathing.  In my head I thought, "If he doesn't wake up around 3 in the morning and ask to go downstairs, he isn't going to wake up from this."  In the morning while he continued to sleep, I sat with my mother and I finally heard the words come out of my mouth, "I think Ty is going to die today."  I didn't want to know this, to feel this, but I knew. 

All morning I was in and out of the bedroom because I didn't want Ty to hear me crying.  I didn't want to scare him or to think he was worrying about me.  I would wander around the house, aimlessly trying to catch my breath before returning to the room once I felt better.  We called the church and asked for the pastor to visit.  We made sure my Dad was on his way, and we had all of our parents here to visit with Ty. 

Around noon, I was finally compelled to just stay in the room.  No more walking around the house.  I am so glad my subconscious helped me settle down so I could stay there with Lou and Ty, holding his hand.  The pastor arrived and he was so kind and gentle.  He helped us say a beautiful prayer for Ty and then he left.  I walked him to the door, came back to the room and the second I turned to look at Ty his eyes shot wide open.  It was as if his eyes were flickering open in a way that I can only describe as magic.  Lou and I couldn't believe what was happening.  We tried to ask him what he was seeing, but he didn't answer.  Lou told me it was time and it took every ounce of my being not to scream and wail and fall to the floor.  I couldn't do that to Ty.  I needed to tell him everything was going to be okay. 

I scooped Ty into my arms while Lou wrapped us both in his.  For a moment, Ty's eyes remained open and I stared into them so intently because I needed to be sure that he was witnessing something beautiful.  I promise you he was.  Through our tears we assured Ty that it was okay for him to go because he was taking us with him in his heart.  Over and over we told him I love you.  We told him how proud we are of him.  We thanked him for letting us be his parents.  We encouraged him to play, to eat candy in heaven and to slide down the rainbows into huge puddles of mud.  His last breath was a tremendous gasp - not because he was gasping for air - it was a gasp like when you witness something beautiful and exciting.  Like fireworks.  I have to believe with all my heart that he was excited. 

When our beautiful nurse came to pronounce him, she was so warm.  She shared with me her experiences and they gave me so much comfort knowing that she witnessed others passing who proved to be similarly happy and at peace.  She also told me that when she came to see him yesterday, she felt very strongly that Ty was already gone.  When she told me that I realized that maybe she was right.  I like to think that he was exploring, being greeted by his friends in heaven and deciding what to do.  When he opened his eyes he was showing us that he was seeing pure beauty and he just was coming back to us to say goodbye. 

Ty's beautiful little body stayed warm for a long time.  I didn't expect that.  The top of his head.  His back.  His belly.  So soft and so warm, we rested our hands there for I don't know how long.  We took turns holding Ty.  Walking around with him and kissing him.  It felt so good to hold him on my shoulder and kiss the crook of his neck without hurting him.  Lou was squeezing him and loving him all up, too.  Finally, to hold him without hurting him felt so beautiful.  We stayed together, just the three of us, for the next five hours or so before inviting our family back upstairs.  I will always cherish that private time we had together. 

After a while, Lou and I gave Ty a warm bath.  Lou washed his head, I washed his feet.  We kissed his skin ten thousand times.  There were as many tears in that tub as there was bathwater, but it was beautiful.  He was so beautiful.  Every inch of his body.  We dressed him in his white suit with a blue pocket square (his favorite color).  We put on all of his jewelry and he is holding his rosary beads from his christening.  We cut his hair for us and we cut ours for him.  We filled his pockets with a blue lollipop from his favorite girls at the bank, a chocolate gold coin, a 2 dollar bill from his great grandfather and some extra money for candy.  My dad put something special in his hand and we have a lot of other things that we will include in his casket tomorrow.  Ty is taking lots of his "loot" with him. 

Right now Ty is still in our bed.  He is all dressed up for heaven.  He has a smile on his face.  I know you all think that sounds crazy, but every single person who has come to say goodbye to him has validated it.  As I am watching his presence leave his body more and more, the hint of a smile on his face becomes even more prominent.  My sweet, sweet, good boy.  He was always quick with a smile, right?  He is telling us he is happy.  It may seem strange that he is still here, but our plan is to have him placed in a casket and then cremated.  If a person passes away after 12noon, he or she can't be cremated until the following day.  Ty died at 1PM and there's no way we would leave him with anyone but us right up until the very end.  We will ride with him in the car tomorrow morning.  We will be with him until the very, very end.  Just as he is with us.  I have felt his presence in this room all day long, and I feel him with me right now.  I hope I can always feel him... at least when I need to the most.  I am so scared for Lou and myself in the days that come. 

There was an amazing prayer chain planned for Ty at 7PM tonight.  All morning I told myself that the prayer chain was my last hope.  I wasn't giving up until then.  Maybe all of those voices asking for Ty's healing miracle at the same time would wake him from his sleep and heal him.  So when Ty started slipping away earlier, I almost yelled "No!  Not yet!  I changed my mind, don't leave us!"  As much as I wanted to scream those words at the top of my lungs, I remained as calm as possible and instead allowed Ty to give us the greatest gift of peace, serenity and ever-lasting presence.  I imagine he saw what an incredibly beautiful day it was today - by far my most favorite kind of day - and maybe he just didn't want to wait any longer.  He wanted to take off into the crisp fall air and fly over the golden trees into the sunlight.

At 7PM this house became flooded with tears.  Lou and I remained alone in the room with Ty to say our prayers before allowing anyone to come up and see him in his suit.  From here we could hear all of our closest family members breaking down.  The cries and sobs could no longer be disguised.  Outside our house were hundreds of people with candles, united in prayer.  In town there was another circle of friends gathered - lighting candles for Ty.  There was a vigil held for Ty in Long Beach on our boardwalk.  All over the place, people were praying for Ty.  What an incredible way to honor our incredible little fighter.  Thank you so much, everyone, for loving Ty and for praying for his miracle.  Just because he wasn't healed, doesn't mean we didn't all witness a miracle.  Over the past two years, I've seen several.  Ty Louis Campbell's existence alone was a miracle. 

I still believe.  I hope you do, too. 

God Bless you, Ty.  Please visit me in my dreams.  I don't know what I'm going to do. 

Wednesday, October 17, 2012

Ty Louis Campbell
10.04.2007 - 10.17.2012

Tuesday, October 16, 2012

No smile today :(

Today was a day of rest for Ty.  It was not a smiling day.  It was a hot sweaty, uncomfortable, feverish day.  Ty was feeling so terrible, and I overheard Lou whispering to him, "I'm so, so sorry, Ty.  We tried so hard.  All of that medicine you've had, and all of those surgeries.  We really wanted them to work.  You have been so brave.  I'm so sorry."  I've uttered those same words a thousand times, as well. 

Everyone asks how we are doing.  The truth is that we are usually okay because we are so consumed with taking care of Ty.  As always.  We are in overdrive just going through the motions and keeping our mind, body and souls very busy by focusing on our special boy.  But on days like this, we feel like we are failing him. We watch Ty on the couch and we hear ourselves sharing our most brutally honest thoughts.  How we want him to leave us so he can finally feel better.  So this nightmare can be over for him.  We, too, will be given a sense of freedom that we won't even know what to do with after all this time living this life, but the absence of Ty will be so severe and so destructive, I don't know how Lou and I will survive it.  The void will be ever-present and oh so painful. 

We say, in our most rational voices, that we want the fight to be over.  We tell each other we are ready for Ty to be free.  But as soon as something happens where we realize it might actually happen?  That maybe the miracle of Ty jumping off the couch - fully healed - isn't in the cards?!?... we panic.  We freak out like you can't imagine.  Today was definitely one of those freak-out days.  This was a crazy house.

Ty was running a low fever for the duration of the day.  This has happened before.  He hovers around 100.5 - 101 degrees and just sleeps it off.  Today was different, though.  Today he had a cold, clammy sweat throughout his body the entire day.  His face was very pale and pasty. He was wincing in pain while in and out of sleep.  His hands and feet were cold when my usual tell-tale sign for a fever is hot palms coupled with a warm kiss on the forehead.  I've told you before what I've read about cold extremities - how it is a sign that the body is working hard to stay alive - so Lou and I walked around with heavy hearts all day.  We met each others eyes and exchanged a thousand concerns with wild panic in our eyes.

I spoke to his hospice nurse, who advised me to give Tylenol around the clock and we'll wait it out 24 hours before changing anything in his medication.  I spoke to his nurse and doctor from Sloan Kettering later in the day who asked tons of questions to help us determine whether we might be dealing with a bacterial infection, a virus, or something related to disease progression. Dr. Kevin seemed less worried knowing that Ty was up and down throughout the day and hovering at a relatively low temperature.  We covered the various scenarios so it was understood what Lou and I would and would not be willing to do and in the end we agreed to wait it out. 

Lou and I are not willing to take Ty to the hospital anymore.  He doesn't want to be there. We don't want to be there.  And, we are afraid that if we ever step foot in that place again, we would end up leaving without our son.  His doctor did not disagree with that fear.  Rather, he felt that would be a likely scenario as well, and spoke about the various things that would have to take place in the hospital setting in order to treat Ty given his symptoms (blood cultures, urine cultures, chest x-rays, CT, a potential lumbar puncture, etc.).  No thank you. This boy has done enough of that.  We tried so hard for so long.  What a fighter he is!  But, we have agreed that "no more" is the only option for Ty, and what happens next is in God's hands (as it always has been).  Thank you for helping us with your constant prayers, and for those of you who are not the praying kind - your positive thoughts and kind words are working wonders as well.

In true Ty fashion, he waited to get really sick until just 1/2 hour after I hung up the phone with his nurses and doctors who called it a day.  I checked his temperature and it started going up, up, up!  Stopped at 103.2 and I had already given him Tylenol an hour prior.  Even the cold compresses weren't helping.  Of course, we began to panic.  What if it keeps going up?  What do we do?  Can he die of a fever?  That's not what we want, is it?  Will his pain get worse and worse as his fever worsens?  What should we do!!!!  Thankfully, Ty has a very compassionate doctor who answers text messages and had me call him on his cell phone. He talked me through it again and I felt comforted.  We had an on-call hospice nurse visit who also reassured us that his cold hands and feet really weren't that kind of cold, and that if his fever goes up, well, it goes up.  We are taking it one step at a time because no one wants Ty to go through any additional tests or unnecessary antibiotics when we know he has underlying, terminal disease progression.  We all know he has been through enough already and she reassured us that he is comfortable right now as he sleeps through this fever. 

Lou and I were able to change him into fresh pajamas without waking him.  I carried him up to bed in my arms and didn't want to let him go.  I could carry him in my arms like that for eternity.  I don't ever, ever, ever want to let him go.

Ty's nurse at Sloan Kettering saw the newspaper article about the hawk release in Ty's honor.  She lives in Westchester and thought it was such a beautiful idea.  We both agreed that from now on, whenever we see a hawk in flight we will wonder if it's TLC :)  I love the idea of that.  Thank you, again, to everyone who was responsible for that.  What a beautiful way to symbolize all that Ty has endured and the freedom he deserves. 

Goodnight.  Tomorrow will be a smiling day.  I can feel it.

Monday, October 15, 2012

Sweet Dreams

Ty's hair is just pure awesomeness.  We don't do anything to style it, he is just a natural hipster :)  Then there's those slightly parted heart shaped lips when he's sleeping... they are more tempting than the reddest, ripest apple.  How can I resist not pressing my own lips against that pucker right there and stealing a smootch? Taking in the sweet smell of his warm breath? It's as delicious as it was the day he was born.  Not a day has gone by that I haven't kissed those sleeping lips since.  What will I do???? 

It's been a long day and I ran out of time to write much, but I did want to share just one quick story behind his smile of the day so you know that all is well with the Campbell's. 

Ty has been having it pretty rough, so we asked Nana to take Gavin overnight last night, and then he spent the majority of the day with Aunt Debi and his cousins today.  As much as I love and miss Gavin, of course, when he is home the dynamic of the household changes drastically.  He is boisterous and full of energy and he just wants us to play, play, play.  When Ty is feeling crappy, that can become a problem.  I stress over trying to keep the environment around Ty as quiet and serene as possible, without offsetting Gavin's natural need to be a kid.  This morning it was perfect.  A lovely morning with Lou and I surrounding Ty with love and silence while Gavin lived it up at Nana's house.  Ty was neither happy nor sad.  He seemed comfortable and rather sleepy all day, but very peaceful and it was nice. 

In runs Gavin at the end of the day.  Full of energy.  I played supergirl while he was superman, I played Robin to his Batman, and he wanted me to be Hulk when he was spiderman.  When I put on the hulk gloves and began "smashing" up the place, that is when I saw Ty break into full-blown smiles for the first time all day.  It made my day, as always, and I couldn't stop myself from punching everything in sight to keep his interest.  The floor, the walls, the chair, Gavin!  Ty was eating it all up and that made today a happy day.  I wasn't able to capture a photo because I was too busy playing when the smiles finally came, but trust me, they were priceless.

Ty's sores seem to be getting a little better.  They still pose a huge challenge, but Lou and I are doing our best to keep it under control and so far, so good.  Please pray for a good night's sleep for everyone, especially Ty.  No more nausea, no more head pain, no more congestion... and a complete miraculous recovery :)  Thank you for all of your hope and prayers.

Saturday, October 13, 2012

My "Big Kid"

Baby Ty, Summer 2008
When I found out I was pregnant for the first time, I signed up at  I wanted to track everything about my baby's growth from the time he or she was the size of a sesame seed until birth and beyond.  Every week I would get an email about how my baby was growing eyelashes and was the size of a kumquat or something.  It was so exciting.  After Ty was born - the best day of my life - I continued to get these emails.  The subject line always read "your baby this week" and would be filled with information on developmental milestones, parenting tips, etc.  As he got older, the subject changed to read "your toddler this week," then "your preschooler this week."  I noticed that since Ty turned five, it now reads "your big kid this week."  How is it that my little baby is all of a sudden a big kid?  My tiny, toddling two-year old who we took to the hospital for some peace of mind one night, ended up becoming such a big boy during all of these subsequent hospital stays.  He grew up in so many ways that I never wanted for him, but still he smiles and shows us all that he is the same "kid" we know and love despite all he has been through.

I can't remember the last time actually I read one of these emails from Babycenter.  Certainly well before Ty was even diagnosed because once Gavin was born I barely had time to comb my hair in the morning :)  Then, of course, once he had cancer I didn't live in that world anymore where teaching Ty how to cope with sharing was something I was concerned about.  When I noticed the most recent email, I debated on whether or not I should just unsubscribe.  I don't know, should I?  I guess there are going to be a million things like this that I am going to have to decide about.  Whether or not it's better for me to let go of them, or hold onto these hurtful but special reminders of my son.  Ty Louis Campbell.  Who was here, who was five years old, and who was so very important to so very many people.

Today's sleepy smile of the day (above) was a really big one, but we could only capture the tail-end of the moment.  Ty slept most of the day away today, probably because he was running a low-grade fever at times.  He was only awake for a total of about four to five hours all day, three of which were between 5 and 8PM.  That was when the magic happened.  It was just Lou, Ty and me.  He was talking to us in a whisper and he joked that he wanted to stay up and "party alllll night."  That used to be one of his favorite things to say, and we haven't heard it in so long.  He gave us the biggest sh*t-eating grin over that joke tonight.  We loved it and it took away a lot of the terrible anxiety that had otherwise been sitting on my shoulders and crushing my chest all day. 

I wish I had a better update for you from a medical perspective, but Ty continues to suffer from nausea and most recently we found that his skin is deteriorating.  He is essentially developing pressure sores on his ears because he is laying on his side all day and night, then the skin over the valve of his VP shunt developed a huge scab overnight!  This is a very big deal.  As you might recall, Ty's last surgery was necessary to address some stitches over his shunt that weren't healing well.  The hardware had to be replaced and moved to an area on his head where the skin was healthier.  Unfortunately, it protrudes from his head quite a bit so when he became bed-ridden the skin in that area became irritated, too.  Now he can only lay on one side, and if that sore gets worse he will be at a huge risk for another infection in the central nervous system because the hardware will be exposed to the elements.  This is the photo we shared with his doctors (sorry if it's hard to look at, but this is the reality of my five-year-old's life with cancer).

Surgery isn't an option, at least not one that we would consider knowing what we know about Ty's progression of disease.  Instead, his nurse created a foam pillow with a hole cut out for his shunt and his ear in case he needs to turn to the other side.  He has been on antibiotics to hopefully prevent the spread of infection.  We will be watching this closely and praying it heals.  Ty needs to be comfortable and this is just another thing that will hinder that for him.  I want to scream about the unfairness of it all.  If I ever meet the "Murphy" behind "Murphy's Law", I will make sure he is utterly tortured - because anything that can go wrong, has.  I will also laugh in his face as I'm crushing it under my boot because Ty continues to persevere through it all.  Ty Campbell is the strongest person I will ever know.  His name alone oozes the strength, dignity and dexterity of a Quarterback or Surfer, a CEO or Senator.  Even better, a little boy whose bravery changed the lives of complete strangers forever. 

I have so much more to share about today because there were some wonderful events taking place in honor of Ty this weekend.  I hope I can do them justice because I wasn't able to attend most of them, but Lou and I took turns bringing Gavin as much as possible. 

First, the homecoming parade in Pawling honored Ty with a superhero theme.  I marched in the parade with Gavin for about five minutes before he was too overwhelmed (and cold!) but it was so great to see all of the kids and Pawling families supporting SuperTy!  That's me and Gavin in the middle, but it's hard to recognize him dressed in full Spiderman gear.  Gavin has recently traded in his Toy Story obsession to share in Ty's love for super heroes.

The Rock n' Roll 10K took place this morning, as well, and Team SuperTy raised tens of thousands of dollars for the Weill Cornell Children's Brain Tumor project.  Some of my best girlfriends in the whole world, who I've known my entire life, flew in from California, Florida and Virginia just to run.  They even drove several hours back and forth from Long Island just to see Ty and spend a little time with me last night.  It was so special for me to hug them and cry with them and just remember what it's like to be surrounded by my closest friends.  So much time goes by and we are so busy with our lives, but when we get together it's like nothing has changed.  I love them all so much.  And, I am SO PROUD of them, and all of the amazing people who ran for SuperTy today.  A 10K is a big deal, and they were running like the wind!!  Thank you, everyone.  There are so many runners on Ty's team who I have yet to meet and I was so disappointed I couldn't be there to hug each of you and give you my most sincere thanks.  I don't have a team photo yet, but I will post it to Ty's facebook as soon as I can!  Here are some of my favorite people in their Captain America hats.  I'm not the only one who will be wearing that hat all winter for Ty :)  Awesomeness. 
Speaking of the hats, there is an auction that is still underway until September 17 (thank you so much to the beautiful person who coordinated this).  CLICK HERE to check it out (I believe you need a facebook account). 
In Lou's hometown, a rehabilitated hawk was re-released into the wild in Ty's honor.  Approximately 100 people were in attendance today and it was a beautiful sendoff for the hawk named TLC (aptly named to represent the tender loving care that saved her life, and Ty's initials, the little boy who inspired the event).  It took so much work to pull this event together in such a short time, and I can't believe how amazing it was.  Lou was there with Papa and Gavin, and the photos are priceless. 
TLC getting ready to go
I'm outta here

Fly high beautiful bird!
This weekend, our friends also started an online petition to get the NFL & Nike to go gold next Sept. for pediatric cancer awareness.  I believe you can easily access this online and participate here by filling out a simple form.  In addition, the Ty Louis Campbell Foundation was approved by huge corporation, Pepsi Co. to be on their matching gifts website & will match any donation made by a Pepsi employee.  A 3-mile race took place in Yorktown in honor of Ty (please send me pictures via facebook, I don't think I've seen any!) and two online shopping fundraisers with Silpada Jewlery & 31 Bags are taking place where profits will be donated to the Ty Louis Campbell Foundation.  A friend in Massachussets has even taken it upon herself to create "I Love Kids" bracelets with SuperTy symbols and sell them locally for the cause. 

What I love the most is how many kids are getting involved in the cause.  I wish Ty could understand how truly loved he is (I think he knows, actually).  We've received so many cards and posters from kids and teenagers since Ty's birthday, and every one of them are on display in our living room so Ty can see. The local Carmel cheerleaders changed their hair ribbons to gold in honor of Ty & to raise childhood cancer awareness, and the HVK junior pee wee football team is wearing gold shoelaces.  They aren't waiting for September next year, they are doing it now and I was so honored to know that Ty influenced this. 

For you Ty !! My son Nicky broke the huddle down tonight yelling, "remember who we're playing for 1-2-3 Ty !" And they won big for ya buddy 33-13!!

The weekend has been a very busy one, so please don't worry if I don't get a chance to post as regularly or respond to your messages.  I haven't had much time to get online, but I will catch up sometime this week :)  As always, know that we are so thankful for your comments, your encouragement, your guidance and your prayers. 

Friday, October 12, 2012

My heart is overflowing

Tonight, I am happy.  After an absolutely horrific night last night, I dragged myself out of bed today not knowing how I would make it through this day.  I was so pleasantly surprised.  Today was a gift.

After my post last night, I went to bed with Ty and gave him his midnight meds.  He immediately threw up after I pushed them into his belly tube even though he usually isn't so sensitive.  It was a really bad one.  I had to clean him up, change his clothes, clean up the pillows, the bed, clean out the suction machine, get him a new g-tube, among other things.  It was okay, though.  It felt good to care for him like that and I knew I was making him feel better just by getting him all clean, soft and cozy.  Unfortunately, my tender loving care wasn't enough and he ended up vomiting every half hour or so for the next six hours.  I think part of the problem was that he threw up his anti-nausea medication the first time. 

When 6AM rolled around I was able to give him more anti-nausea medication and finally we got to sleep.  Thank God Lou let me sleep late and Gavin had "lunch bunch" today at pre-school (which means we didn't have to pick him up until 2PM).  When I came downstairs for the day Ty looked pretty good but so tired.  Lou and I traded places so he could go up for a nap, and I shared some beautiful and peaceful quiet time with Ty until it was time to pick up Gavin. 

Today was my favorite kind of day (the phone on my camera doesn't do it justice).  The leaves are turning, the sun was shining and it was cool and breezy outside.  I rarely get out of the house, but today it was a must for my own mental health.  When I left to pick up Gavin it felt so good driving along these beautiful country roads that I decided to take him straight to the park to practice what I preach.  Gavin jumped in the leaves - a lot - he splashed his feet in the lake and got downright dirty.  Here he is later tonight, all clean.  I am ashamed about how neglected his hair is, though.  That kid has needed a HAIRCUT for weeks!  Then again, he plans on being Thor for Halloween - maybe we should just keep it going until then :)

When we came home, Ty was doing so well.  He was awake, he was speaking well and he was in a good mood.  All that rest in the morning helped us to put last night behind us and fully enjoy each other into the evening.  Before bedtime, I insisted on giving Ty a bath against his will.  I needed to wash away the sickness from the night before and I promised he would feel so good and cozy afterward (he is always very reluctant because it is painful for him to move around and especially getting in and out of clothes). 

Bathtime was a gift, as always.  Lou and I each take one side of the tub.  Tonight I washed his hair and face while Lou had his feet.  We relished in his nakedness from the tips of his fingers to his ears, the bottoms of his feet to his adorable belly button.  His clean, soft skin is as delicious as milk and honey. 

Not exactly a smile of the day, but still shows how beautifully content he was today

Ty and Gavin both fell asleep beautifully so we dared to watch a movie tonight.  We Bought a Zoo.  It was a really sweet movie and Matt Damon is just amazing in every movie.  There was a scene between him and his 7-year old daughter at bedtime where she asks about her mom (who died). 

"Do you worry because you feel like you can't see her?  Hear her?"
"What can you do?"
"Catch her spirit."
Then they reach into the air and snap their hands closed.
"Now what?"
"Put her in your heart.  Do you feel her?"
"Can you see her?"

It is a sweet, loving idea, but I know that it certainly won't be that easy if Ty leaves me.  Today I am okay because he is still physically here.  My days are still consumed with caring for the love of my life and that is keeping me sane.  I am going to bed with a heart that is overflowing with love and gratitude for my entire family.  I am thanking God for letting me be their mama, and I am always praying for a miracle.  Sometimes I can vividly imagine Ty as an older boy of seven or eight.  Standing tall and thin on his own two feet.  Running and playing and of course, smiling.  Those are my best daydreams.  How I want that for my brave boy.  What would I do without him?   He is my whole world. My everything. My best good boy in the whole wide world. 

Wednesday, October 10, 2012

Simply unfair

Tonight I am overwhelmed by cancer and the unfairness of it all.  Not just for my family, but for all of us.  I don't think there is a person out there who hasn't been affected by this putrid disease.  Kelly should still have her mother to share her children with and ask questions.  My dad should still have his sister Mary to share his memories with.  Marshall and his three small children should still have his wife/their mommy, Stefanie. Chase should be able to play with his big brother Tanner.  Maya and Woody should have Ronan.  I could go on and on and on and on. 

My friend Meghan is on my mind.  I want to call her so badly, but I can't risk waking up Ty (he is sleeping well).  During one of her visits with me and Ty at Sloan Kettering (we were roommates in Manhattan for a long time, and she still lives there), we went for coffee and she told me that her friend, Elizabeth Walker, was just diagnosed with Non-Hodgkin's Lymphoma.  She was so worried, and I promised her, with complete confidence, that Elizabeth would be fine.  I was 100% sure of it.  After a year and a half in treatment, she died just two weeks ago at 33 years old.  My heart is bleeding for her family and friends.  She was beautiful and I know how much Meghan loves her which means she had to be funny, kind and magnetic.

I am sitting in Ty's Captain America room, as I usually do late at night, and I'm amused by the occasional interference I am hearing from Ty's monitor.  Someone emailed me recently about how a hospice nurse told her the interference is from angels who are flowing in and out of the room.  I am comforted by that even though I have to hold back the silly protective mom in me from running into the room to scare them off.  There is this funny feeling of "I am his MOTHER!  He is MINE!  I will keep him safe and I will take care of him!"  It's only natural, I think.  Like I said, I want to hold his hand, walk him into heaven and never let go.  It's very hard to imagine anyone else "taking care of him" and frankly, for as much peace as the image of his guardian angel brings me, it doesn't take away my instinctual need to be the one and only who is there for him. 

It was suggested that maybe I should give Ty a lock of my hair at the time of his passing (probably since my previous idea of cutting off my hand is impractical).  As much as it is horrifying to think about these details, I decided that yes, I will do that.  I want Ty to be cremated with part of me (other than the fact that my heart will always belong to him).  It is symbolic and I like to think that part of our physical beings will always be together. 

I cried a pretty big cry today.  Twice.  I think I needed it.  This evening I overheard Lou with Ty, who was wide awake and listening so intently.  Lou took Ty's hand and shook it like a handshake.  He said "always look 'em in the eye when you shake hands.  Be confident, don't be shy.  But you already know that.  You have been more of a man at five years old than some men are at 50 and you figured it all out on your own.  I'm so proud of you."  Lou was trying to hold back his tears and I had to leave the room so I could hide mine from Ty. 

Then, when I was putting Gavin to bed I laid there and had a very overwhelming sense of calm rush over me.  I felt that all of these prayers were working.  I thought about how we should bring Ty back to Sloan Kettering for another MRI - maybe they were wrong?  Maybe this is all just chronic hydrocephalus or something else fixable!!!  I went from Gavin's bed back to bed with Ty (who had started whining) and when I saw the sweat, heard the rumble in his chest, saw how his body is just skin and bones I remembered the truth.  Oh yeah.  He really is dying, isn't he.  I told him "I love you" a million times.  He didn't respond.  I wanted to hear it soooo badly.  His adorable voice saying "I wub you too," but it didn't happen.  Instead, I put his limp arms around my neck, rested my forehead on his, and soaked his pillow with my tears as I prayed for his healing miracle.  I will never ever stop.  Hope is never false and it is always empowering. 

We had a reporter and a photographer from the Journal News come to our house today.  I was asked a lot of tough questions.  When the photographer asked me to reflect on what it was like to plan for Ty's passing, I spoke so matter-of-fact about it with almost no emotion.  I was so taken back by how easily I spoke about it, it was almost embarrassing.  Later I realized that it was because all of this feels so incredibly wrong and foreign to me.  Like we are doing these things (talking about the suit, the casket, the lock of hair, the "celebration" gathering) but it is as if it's about someone else.  Not us.  Not my family.  It just doesn't seem real.  Something this horrific can't really be happening to my family.  Not to THIS kid :)

Ty Louis Campbell, October 2010
Overall, you should know that today was terrific.  Ty slept well last night without any vomiting and he doesn't have too much pain.  He was content during the day.  We listened to music, read books, and talked a lot about Christmas (because what kid doesn't love Christmas).  When I asked if he remembered the name of his "Elf on the Shelf" I was so impressed when he meekly whispered "Georgie Bell" (Ty and Gavin had a yelling match because Ty wanted to name him George and Gavin wanted to name him Bell).  We had SO MANY SMILES and I'm sorry to say I couldn't capture one of them on camera!!  Lou even got him to laugh!  All smiles were compliments of sheer silliness.  We joked around and teased one another and Ty just ate it all up.  This photo wasn't taken today, but I don't think I shared it yet so I thought I could use it as a substitute :)  His face was a bit swollen on this day, but his smile is still as beautiful as can be.