Wednesday, April 27, 2016

Spring Cleaning with New Meaning

I spent the weekend cleaning out the closets with Lou.  And the toy chests.  Every time it gets a bit easier as I find less and less of Ty’s things. It’s natural for a home to transition from baby toys, to big kid toys, to teenager “stuff.”  But when the traces of a life lost slowly disappear from existence, it is painful on a level that I can’t put into words. 

This year, I am giving away a silly toy where you blow into a pipe and try to balance a little foam ball as it floats above.  Aunt Debi bought it for Ty while he was in the hospital.  It was great for his therapy, but he never quite recovered the strength to get the ball in the air.  It was time to let it go.  I was consumed with guilt as I watched my hand open and the object drop into a garbage bag.  It feels as if I’m throwing away another memory, but at the same time I know I can’t keep everything (unless we're talking about a decomposing cake - that I can keep forever). 

This year, Spring Cleaning had new meaning.  Lou and I are expecting a new baby in October, so we had to consider keeping some of the items that would have otherwise been disposed of.  It was so strange to imagine we should hold onto those car seats, and the toy kitchen.  Surreal, really.  I know, many of you are probably shocked reading this.  I never really talked about having another baby… I think because I never truly believed it would happen for us, and it made me feel vulnerable.   

Cancer didn’t just rob Ty of his childhood (and his adulthood, and everything in between).  It robbed our entire family of what we were supposed to be.  I wanted to have at least one more baby after Gavin.  A girl (of course) and the three of them would grow up being the best of friends.  When Ty was sick I often cried to Lou about how cancer was threatening us with Ty’s life, and also stealing our opportunity to add a new life to our family.  We needed to be 100% there for our son, and a baby was an impossible thought. 

After we lost him, my thoughts about getting pregnant were so terribly inconsistent.  On one hand, I shuddered at the thought – as if a new baby would be a futile effort to replace the irreplaceable.  On the other hand – I was in a panic because so much time had passed, I was so much older than I wanted to be if I was going to get pregnant, and my ovaries were shouting “tick-tock” when I tried to sleep at night.  I worried that if something happened to me and Lou, Gavin would be alone in life. 

A couple of years ago, Lou and I agreed that maybe a baby would be a good idea.  Maybe it would bring some light and happiness back into our home.  We tried to get pregnant, but it didn’t happen.  I was shocked and angry because I never had any trouble getting pregnant before.  Why?  Why when I’m already in so much pain do I have to suffer another monthly reminder of how terribly wrong my life turned out. 

I spoke to a doctor about the trouble we were having and he had lots of suggestions.  None of which felt right.  Lou and I decided that after all we’ve been through, we didn’t want to take any measures to make it happen.  If it was meant to be, it was meant to be.  And when I turned 40 in October, I truly started to accept that it wasn’t.  In January my best friend treated me to a girl’s weekend in Puerto Rico where I shared my acceptance of this fact, and she insisted – poolside with a cocktail in hand – that I would get pregnant.  That I was being ridiculous for talking like that and together we laughed and decided that if I did have a baby it would be a little girl (obviously) and I would name her Faith.

Turns out, when you give up on getting pregnant, accept your life as it is, and start planning for a different future, that’s when life likes to get interesting again. I got pregnant soon after that trip and I am going to have a baby in October.  Just when I got truly comfortable with the fact that Gavin can take his own showers, wipe his own butt (sometimes), fold clothes (sort-of) and clean his room.

Sorry we didn’t tell anyone sooner.  But I’m 40, and the statistics on things going wrong at this “advanced maternal age” are frightening.  After all we’ve been through, I needed to get the results from multiple screening tests and blood work before I was convinced everything is going to be okay.  The benefit of all this advance screening for old ladies like me is that we also get to find out the sex of the baby early-on and guess what?.... it’s a boy.  I’ll share my thoughts on that in a few days because I need time to spill the mix of emotions I have over that fact. 

This morning I caught the early train.  I stopped by the bakery just as they were opening for a coffee and a warm, sticky, fruit and cheese Danish.  I got settled on the last car, opened the bag, and just as I was getting it on with that delicious morsel, I felt him move. 

It’s real.  This finally feels like it’s really happening!  And I guess he loves a warm danish as much as I do! 

Just like that, I traded in my vision of pigtails and sundresses for my new morning date at the bakery.  He will hold my hand and point his little chubby fingers to his favorite cookies behind the glass, and I will buy him anything and everything he wants :)

Saturday, April 16, 2016

Disregard the Cake

When we moved into our house, there was an old refrigerator in the basement.  They don’t make ‘em like they used to, because this thing looks like it’s 100 years old and it still works without any problems.  It's on the same floor where we walk out into the backyard, so naturally it became the “beer fridge.”

On Ty’s last birthday with us, so many people did so many incredible things to make him smile.  In fact, we enjoyed “SuperTy” cupcakes from a local baker, a 3-tiered SuperHero cake with all of his beloved characters, and his favorite of all… a Max and Ruby Cake with a carnival theme.  It was one of his favorite episodes, and he often talked about going to the carnival.  In fact, he was laid to rest with his favorite Max and Ruby DVD and carnival tickets in his hand.  

He died 13 days after we helped him blow out those candles.  It’s still impossible to believe.  No matter how quickly life goes on, how often I find myself smiling again, and how much I have accepted that he is never coming back, the unbearable weight of his absence will ALWAYS remain.

So if you find yourself enjoying a laugh amongst friends in my backyard and someone sends you to the beer fridge for another round, please disregard the birthday cake on the top shelf.  Although the fondant Max and Ruby haven’t aged a bit… 3 and a half years have taken quite a toll on the rest of the cake that was once vanilla (I think) with cannoli filling.  I can’t recall because only one slice is taken from it.  I imagine we didn’t have much of an appetite those days. 

It’s totally weird.  I know this.  In fact, sometimes I laugh at the cake whenever I am caught off-guard by its presence.  But for some reason, I leave it.  Lou leaves it.  We rarely talk about it… the cake simply remains where we last placed it on October 4, 2012.   Ty’s fifth and last birthday. 

I was prompted to write about this today because when I was rushing off to work I noticed Gavin’s leftover mac and cheese in the backseat of my car.  Ugh.  Since it was 30 degrees all night and my car was covered in frost (unbelievable), I figured I should quickly throw it in the fridge.  In my haste to catch the train I opted for the beer fridge.  The cake, of course, caught my eye.

On my way back to the car I thought to myself… “It’s time, isn’t it?  I should just do it.  Pick it up, walk it to the garbage can, drop it in and don’t look back.” 

But to tell you the truth, even though I’m ready and I think I could do it without crying, I kinda like having that rotten old cake around.  At this point, it’s even comical to me.  What an adorable metaphor for how broken we are, and how time…. in the most biological sense… certainly does NOT heal when you think about it.

I cast my vote for one more summer of yelling “disregard the cake” as others unexpectedly find themselves staring at the decomposing leftovers in the beer fridge.  And if you try to make me feel better by explaining how time heals, I might ask, “Have you seen my cake?  Because time certainly didn’t do any favors there.”


Thursday, March 31, 2016

When there's no such thing as too much TV. Why I love preschool programming.

In support of National Jump in #MuddyPuddlesDay, published another blog post I wrote about Ty.  Please read and share on this very special day.

I was waiting for this day to announce some incredible news about our partnership with Peppa Pig! Peppa is a beloved animated character who loved to jump in muddy puddles as much as Ty, and she was one of his absolute favorites.  I believe Ty had everything to do with her finding us, and choosing to support the Muddy Puddles Project.  It's all just so incredible.

Please read and share the post below.  Let your kids jump in puddles today.  Post your photos with the hashtag #MuddyPuddlesDay.  I can't find the words to express how grateful I am for this day.

Friday, March 25, 2016

The Inappropriate Show

Gavin is growing up so fast.  I love to listen to his conversations with his little friends.  He is almost seven now, and the things that he talks about keeps me smiling all day. 

He is growing into such a fun little person, but this is no surprise.  Who he is, everything about my Gavin, has been evident since he was just a baby.  His big goofy grin, his preference to laugh and tell jokes over anything serious, and his extreme sensitivity that causes him to cry so easily, these tendencies have always been there.  There are so many things about the person he is that he will carry into the person he becomes.  So much of Lou and I whether we like it or not.  Like Nana says, “you don’t plant potatoes and get tomatoes.”

He is still a complete wacko and he has a sick little sense of humor.  In fact, let me tell you about “The Inappropriate Show” that he made up with his best friend.  When they get together, they make up grotesque episodes of their imaginary TV show that are highly… you guessed it… inappropriate.  They think they are absolutely hysterical. 

There are two main hosts of the show and in a recent episode one of them was going to have a birthday party, for example.  Of course, there will be a piñata… but in order to make sure it is appropriately inappropriate, the piñata was going to include plastic penises, and plastic vaginas.  “The penises will have a button on them so when you press it, pee comes out all over!”  Cue hysterical laughter from my backseat. 
“And the vaginas will have a button on them, so when you press it, a real live baby pops out of it!” Even more hysterics. 

Creative genius, folks.  What is wrong with this child?  He also decided on a career, by the way.  He is going to be a doctor when he grows up.  He decided on this career path only because I recently explained to him that he can’t come to an appointment with me because people have to get undressed for their physical exams. 

“Oh, I’m gonna be a doctor! Boobies and butts, baby.” he exclaimed.  He’s a sicko, this one.  And I love him to pieces. 

The other night when I was putting him to bed, we were talking about how much he missed having a big brother, and how great it would be if Ty was still here with us.  Gavin said, "if cancer was a person, I would give it BOTH my middle fingers... and my middle toes... so it could be four times as much!"  

I honestly don't know where he gets any of this... the middle finger, the vaginas, and so on... but I agreed with him on that one despite how inappropriate it may have been.  

Saturday, February 6, 2016

Grief. It creeps up on me.

My grief.  It can come out of nowhere at all.  Really.  There doesn’t have to be a trigger.  There doesn’t have to be an anniversary, or a birthday, a special time of year or a certain smell in the air.  Sometimes, it just happens. 

I found this incomplete blog post as I was trying to organize the files on my laptop this morning.  This is one among many.  I still write to help myself, but I don’t always post what I write anymore.  I worry that it is often so sad - because that is when I need to write - so I try to be cognizant of that.  But when I got to the end of this one, it made me proud, and I want to share… 

August 2015:
Tonight I want to Daryl’s House for the first time.  For those of you who don’t know, Daryl’s House is a venue that opened up in Pawling just about a year ago, and it is a great place for enjoying dinner with incredible live music.  Daryl Hall started “Live from Daryl’s House” – a free monthly web show – in 2007, and he created this venue to give his favorite artists a place to play. 

Also for those of you who don’t know, I absolutely love to listen to live music with the exception of drum solos, which is a legitimate pet peeve of mine (even when it’s you, Tommy Lee!).  Anyway, it’s been a long time.  A really, really long time.  Ty getting sick changed everything in my life.  I still have yet to gain a lot of it back, and of course I’ll never be the same.  But tonight, I feel like I found a tiny sliver of my old self again.

So the Jason Gisser Band was going to play at Daryl’s House tonight.  Of COURSE I would be there despite the internal struggle I face any time I am invited to “go out.”  I got there, it was a beautiful summer night.  I was excited to be out with a signature martini in my hand, surrounded by a number of fun, lighthearted people.  We laughed, we ate and we danced in our chairs to some incredible music.  Some of my favorite songs were played (Angel from Montgomery by Bonnie Rait and Ramble On by Led Zeppelin) and I texted Lou to tell him how happy I was to be out enjoying this music.  By the time the Jason Gisser Band came on, I was downright giddy.  I had so much fun listening, watching, dancing, etc. 

Then I don’t know what happened!  I mean, seriously… W..T..F..???  I was listening to their encore performance, loving every minute of it, and all of a sudden I was holding him again.  My baby boy.  I relived the moment he was cradled in my arms as he gasped his last breath.  I watched the life leave from his partly opened eyes, and the pulse of his heart stop delivering a rhythmic throb from within his partly opened lips.  His beautiful face immediately went from looking “still alive” to looking… the opposite.  And there I sat, surrounded by people enjoying a great night out with great music, and somehow I didn’t cry.  Somehow, I didn’t run away.  I wanted to.  I even played it all out in my head in case I did need to leave in a panic, but thankfully, I didn’t.

I have decided, this very second as I reflect on what went down tonight that… Yes, I am STRONG!  Thank you, for all who have told me that over the years because I refused to believe it until just now.  I am fucking strong.  And Lou is fucking strong. And we are so lucky that we haven’t jumped yet, even though there are so many times we need to talk one another off the ledge.  I am thankful for a fun night out, that didn’t end with me fleeing in a panic.  XOXO. 

I miss you, Ty.  I love you so. I can't wait to see you again.  

Thursday, December 24, 2015

Coping with his absence at Crimpy time

Holidays are built on tradition.  They come with a host of annual rituals that stir up all sorts of long-term memories from as far back as early childhood (when I got a “Baby This N’ That” from Santa), and as recent as just last year (when I failed at cookie decorating).  I remember who gave me almost every ornament on my tree.  I chuckle every time I count the 11 “Baby’s First Christmas” ornaments we have for Ty, and only one we received for Gavin.  Sorry Gavin, it’s just a fact of life when you are not the first-born.

Then there are his ornaments.  The one he picked out when we were on our Make A Wish trip in Disney.  The ones where a bear holds a number for each Christmas he celebrated with us, but the numbers stop at “5”.  The ones that adorn his beautiful photos with sentiments such as, “always in our hearts,” and “Christmas in Heaven.”  I seriously don’t know how we survive tree trimming each year.  Every ornament I pull from the box stabs a bit harder and stings a bit sharper than the last.  Even the happiest of memories are juxtaposed with the reality of how much things have changed.  

Our house is decorated.  It is beautiful and festive, and if you didn’t know better it would feel oh so merry and bright when you walk through our front door.  But that’s because the extra stocking on the mantle goes unnoticed to most. 

This will be our fourth Christmas without Ty, and I can’t remember a single thing about the first Christmas without him.  Not one.  Gavin was 3 ½ years old, I know that, and he was probably just starting to take notice of the holiday magic, but I was too absent to witness any of it. My body was there, but my heart and soul were elsewhere.  I know we got a tree, but I can’t remember doing so.  I suppose we decorated it, but I can’t imagine how.   Slowly, I am trying to rebuild family traditions that honor Ty’s memory without being mired in sorrow.  But to be honest, I still find it pretty impossible.  I am much better at coping with his absence, but it doesn’t make it any less painful.  It’s just different now. 

We continue to hang Ty’s stocking next to his brother’s.  Each year it is too difficult to imagine placing it back in the box, yet seeing it hanging there every day is equally cruel.  I will fill it with his favorite candy from Santa Clause as I have done every year, but on Christmas morning it is a strange and uneasy feeling when we have to unpack it ourselves, and the candy sits uneaten in my pantry for months afterward until one day I toss it out quickly and without question in a moment of strength. 

I wonder what Ty would want for Christmas this year.  What pages would he be folding in his toy books?  He would be 8 years old, and I don’t know what his eight-year-old voice would even sound like.  So I playback his squeaky four-year-old voice in my head and I hear his giggle when he announces “Bow and Arrow!  Guns!”  He loved the rise it would get out of me. 

So this year I didn’t resist when I saw the totally awesome bow and arrow at the toy store (Nerf, don’t worry).  I bought it for Ty without question, and that secret was mine and only mine as I continued to walk the aisles and unload at the register.  Later in the week Lou and I were talking about how we can honor him on Christmas morning.  We decided that we will watch some of his home videos before opening presents (something Gavin may end up bringing to his therapist later in life along with a long list of other things), and we will wrap the bow and arrow as a gift for Gavin… from Ty.  I am pleased with this.  I hope to give Gavin a gift “from Ty” every year from now on.  Something that is meant for Ty, but equally fun for his little brother to play with in his memory. 

Christmastime, 3 years old.  Ty pointing to the present he wants to open.  Look at that smile!

When I was searching my photos over the years, I relived the holidays from 2010 - 2012 and for the first time it occurred to me how blessed we were with having truly wonderful, happy, magical Christmases.  Easter, on the other hand, was always the worst.  Christmas was our most joyous holiday, he was feeling good and happy as can be.  Every Easter he was so sick, and endured such suffering.  Reflecting on this now, I find it so very poignant.

This time of year I am reminded of the reason for the season, but as much as I love and trust in God, I will never be able to stop asking, “why?” I used to pray to Mother Mary with such passion, and her statue at the church always looked at me with sadness and above all, sympathy.  Her eyes told me, “I know, I watched my son suffer, too.”  But they never told me, “it will be okay.”  I searched her face for reassurance.  I begged and pleaded.  But I never saw anything but, “I’m sorry.” 

When I cried to her I would tell her that I’m not strong like her.  That I can’t bear to lose him and if I had the choice to save all of mankind or save my son, I would choose my son.  Because that is how selfish I am.  I should be embarrassed by that truth, but there is no pretending when it comes to prayer.  I had no choice but to lay it all out there, admit I am flawed, and beg for my son to be cured.  I never prayed for anything so hard in my life. 

I don’t ask God for anything anymore, because it hasn't worked out for me.  I have vowed to simply trust in God and stop asking.  Instead, I say a prayer of thanks every night. Even on my worst days, I am grateful for my family, and for the time I had with Ty.  I'm grateful for my Christmas memories with the best good boy in the whole wide world.  I’m grateful for the roof over my head and the food on my table.  My son suffers no more, and I know that.  I am coming to terms with living this life without him.  I value my time here on earth, I adore every minute I have with Gavin, and I absolutely love what we are doing at the TLC Foundation – my happy place.  And when my time comes, I will have the greatest reward waiting for me.  It is that truth that keeps me going.  Merry Crimpy everybody.  XOXO.  

Tuesday, December 8, 2015

The Long and Winding Road that Leads to a Cure

It's been three years since we first opened our doors at the Ty Louis Campbell Foundation. I was so raw with grief and so angry about losing Ty to cancer, that this nonprofit became my lifeline. I lived and breathed fundraising and dove head-first into learning the landscape of childhood cancer research. I reached out to every other childhood cancer nonprofit I could find, and made connections with the parents and the game-changers. It is no secret that I believe collaboration is key and we will make more progress, faster, if we work together.  

It has been a journey in itself - a long and winding road that has consumed my life in the same way cancer did 5 years ago - but this journey has the greatest reward imaginable at the end of the tunnel. If, in my lifetime, I witness a little boy like Ty who survives his diagnosis thanks to safer, more effective treatment options - the TLC Foundation will have achieved everything we set out to do.

There is no place that I love being more than right here in this office. Ty is all around me here - he is a part of everything we do.

Meet Riley - Our First Guest Blogger!
Riley is a young girl in our community who was inspired by Ty's story. She launched "The Blue Lollipop Project" in his memory as a means to help children with cancer. For her Bat Mitzvah Project, she fundraised for the TLC Foundation and continues to support us to this day. I recently invited her to visit the research lab at The Children's Brain Tumor Project/Weill Cornell, and she got to meet Dr. Sheng Li, the Ty Louis Campbell Fellow, along with Ty's neurosurgeon, Dr. Greenfield. I asked her to post our first guest blog about the experience, and her words touch my heart.

"What I thought was already a meaningful experience became so much more. I was given the opportunity to see where my efforts through The Blue Lollipop Project have gone. On November 13, I got to visit the Weill Cornell Medical Lab for Pediatric Cancer Research. The first thing you see when you walk into the lab are pictures of seemingly healthy children who have all passed away from cancer. At first glance I felt happy, thinking that these were pictures of children who had survived, but as my gaze went to the bottom of the photos I quickly realized each one had a birth and death year. My heart stopped for a second as I processed this. It was very emotional seeing all of the kids pictures on the walls knowing that they had passed away, but at the same time it made me feel hopeful knowing that the parents of these children are so strong as they help the lab to try to save other children while mourning their own. Before going to the lab and meeting the researchers whom my project funds, my understanding was that the money I raised went to the TLC Foundation and then from there to funding multiple pediatric cancer research facilities. After going to the lab, I really made the connection between what I do and it's affect on others. I got to meet the doctor, Dr. Sheng, that the TLC specifically funds. Dr. Sheng developed some technologies for pediatric cancer research that are used all around the world. I found it so cool that the person that The TLC Foundation funds has done this. It's truly amazing what can happen when people come together for a single cause. 

This time of year I am so thankful for a multitude of things including my involvement with the TLC Foundation. I hope that people realize what the TLC Foundation does and how the funding is directly used to fund pediatric cancer research. I am so grateful that I got the chance to see the lab and meet the researchers. It is so inspiring what they do! Thank you, Mrs. Campbell for sharing Ty’s story and always inspiring me to do more."