Wednesday, December 25, 2013

Christmas Memories


It goes without saying that this time of year can be as uplifting as it is heartbreakingly difficult.  To me, it has always been a time when I reflect on all of my many Christmas's past, fondly remembering the magic that filled my house when I was a child myself and hoping I am doing a good job recreating that for my own children.  Christmas marks the time of year for memories old and new, getting together as a family, going "home" and making a conscious effort to do something kind for others.

Naturally, it is also a time when absence is most obvious. A glaring reminder of our loved ones who are not coming home this time.  When memories only remind us of who is missing.  Every single person who has lost a loved one can relate to how the missing person in our lives becomes that much more absent - even when we least expect it, we may be knocked over the head with longing. There's just something about that Christmas tree, the smell of cookies, the gingerbread house - that allows the memories to come rushing in.

I miss Ty every second of every day and I don't want to spend tonight reflecting on the immensity of that reality this time of year because I don't think I can bear it. Instead, I want to take a minute to remember my Grandma.  As I was preparing packages to bring to my in-laws for Christmas Eve, I was reminded of her. She died just before we lost Ty.  She was 94 years old, and I didn't get to mourn her because I was mourning something that much heavier - but today I felt her and I remembered her, and I imagined her laugh and I teared up thinking about her warm kisses on my cheek.  It is a very different longing, of course, and I was so happy to dedicate such time to her memory this morning.  I loved her so very much, she was such a huge part of my life, and I am grateful for Christmas memories with my Grandma.

Last night, Lou and I finished wrapping, baking, cleaning, and fell into the couch by the Christmas tree at the end of the night.  We talked about all of our past Christmases with smiles on our faces, until eventually those smiles turned to painful, gut-wrenching tears (as was inevitable).  I love to remember Ty.  I allow myself to fall into the dangerous throws of missing him because at least I am feeling him and honoring him.  But remembering our most difficult days - his cancer and how he suffered immeasurably - is something that I try to avoid for self-preservation.  It is a most slippery slope and the most difficult to recover from.  It is what haunts me every night when my head hits the pillow and it drives me to pour my heart and soul into his foundation so I can feel like I am doing something about it.  I can't fix what happened to Ty, but maybe for other children in the future.

Ty loved Christmas more than I have ever seen a kid love Christmas.  It was beautiful, and we made sure to enjoy it with him.  In 2010, we celebrated what was supposed to be his last Christmas - he was home on hospice care for the first time.  As you know, we were granted a Christmas miracle that year and the tumors in his spine disappeared spontaneously.  By Christmas 2011 we were filled with such tremendous hope!  Ty was cancer free and he was recovering so well - until just a week before Christmas when he suffered a post-radiation brain bleed that left his left side partially paralyzed.  It was such a tremendous blow, but we were determined not to let it spoil his "Crimpy" and so was he!  We made the greatest memories of all that year.  I remember it so well and I will forever cherish every minute of Christmas magic.  Then, in 2012, he was gone.  How is that even possible? 

Instead of saying "Merry Christmas" to my friends who wear the same shoes as I do, I wish that tomorrow can bring them a lot of genuine smiles despite the tremendous sense of "nothing" that otherwise consumes us during the holidays.  Tonight, I watched Gavin open some gifts and I smiled real smiles the entire time.  I watched Lou make Santa's footprints by the fireplace and smiled another real smile remembering how much Ty LOVED that trick (and imagining Gavin's reaction tomorrow morning).  I enjoyed a delicious feast with family and I laughed out loud throughout the night..  I watched the biggest, most beautiful snowflakes falling outside and I got lost in the magic of this holiday once more.  I will never be able to look at Christmas lights the same way because there is a sting in the tail every time, but I can still enjoy them when the stinging subsides.  Life is returning and I am glad I can appreciate all of the beauty that I am surrounded by despite my pain.  Cancer didn't take that away.  Cancer didn't win.

Whenever I think about the shopping and the commercialism and the frantic stress over exchanging gifts, I remind myself of the moment we pulled up to our house after our Make-A-Wish trip to find 12 or more tremendous lawn blow-ups and enough lights to see our house from outer space.  How an entire community came out to surprise us with the best Christmas decorations I've ever seen, some friends driving more than 2 hours to help out in the freezing cold.  That, right there, is what Christmas is all about.



For those who celebrate, I hope tomorrow is filled with laughter and beautiful new memories.  Let's all remember to put down our phones and enjoy the company of our family and friends.  We wish everyone a wonderful 2014.  Thank you, always, for the love and support you have shown us every step of the way.



Tuesday, December 24, 2013

SHARE THE LOVE - SAVE THE DATE

A night of cocktails, couples and casino tables to benefit the Ty Louis Campbell Foundation

Where:  Hyatt Regency Greenwich.  Old Greenwich, Connecticut
When: Saturday, February 15, 7:00 - 12:00 Midnight
What: Open Bar, Cocktail-Style Dinner Party, Silent and Live Auction, Music and Dancing

SAVE THE DATE - MORE DETAILS TO FOLLOW

 

Thursday, December 19, 2013

Can I interest you in a cookie?


So, I had a very different beginning to this whole motherhood/parenting thing than most.  Ty was only 2 ½ (Gavin 16 months) when he was diagnosed with a brain tumor.  For many reasons, we soon moved to Pawling, which was as suburban as I have ever lived.  The usual path might have led me to cupcakes and crayons, but Ty’s cancer didn’t allow for much of those activities.  I had a very different introduction to motherhood – and suburbia – but I so wanted to experience “normal” motherhood (whatever that means), even when I was in the trenches of his illness. 

Ty at the time we moved,  I could wrap myself up in those eyelashes!
At Christmas that first year, I was invited to a cookie swap.  I had no clue what that was, but I heard that wine and cookies were involved so naturally I was IN!  I was essentially alone in this town, and I was really looking forward to meeting some of my neighbors.  Couldn’t wait!

Soon I realized that I was going to have to bake some cookies.  While strolling through the supermarket with my best good boy (as we did every single day – thanks for the memories, Hannafords (or “Heiny-Farts” as me and Ty used to call it), I turned down the baking aisle and settled on a box mix for Raspberry Bars.  In hindsight, there might not be a more “grandma” cookie to pick, but I love ‘em.  Also in hindsight, a box mix is probably not the right call when it comes to a cookie swap – but I was a newbie. 

I started baking a couple of hours before I was supposed to be there.  Per my usual, I didn’t give myself much extra time for mistakes.  My first batch of cookies came out of the oven with an hour to spare for a shower and some makeup – what a treat – but they were completely ruined.  I miscalculated and used half the required amount of butter.  I ran back to Heiny-farts for another box and extra butter, whipped it up in no time and back in the oven it went.  Phew!  I can still do this!

The bars were piping hot when my friend came to pick me up.  I started wrapping up the tray when she looked at me cross-eyed and said, “What are you doing?”  I told her they were hot and I was just going to use the pan for serving instead of a platter.

“You don’t serve the cookies!” she told me.  “You swap them.  You have to set aside a bag of cookies for each attendee!  I think they are expecting ten people, so you should have ten packages of cookies to share.  Then you will be sent home with a variety of cookies from all of the other women there!” 

OMG.  I had pictured it totally different.  I imagined trays of cookies on display, women tasting them with wine in hand, and if you liked a particular cookie you could take a couple home with you, too (while I accidentally spilled my raspberry leftovers in the trash while no one's looking).  In a panic, I started scooping up my scorching hot raspberry bars into sheets of tin foil.  The jam was still completely melted and the bars were so hot, it was like I was pouring oatmeal from a ladle.  My friend was completely amused at my attempt.  After folding up a few tin foil beauties, I put them all in a brown paper bag and off we went. 

Did you know about the magic that is a cookie swap?  Because clearly, I had no idea.  A cookie swap has adorable bags with snowflakes on them, ribbons and customized paper cutout tags.  Each bag includes the recipe “from Cindy’s kitchen” on a doily or a laminated, hole-punched card.  I brought tin foil with globs of oatmeal inside.  The recipe was on the side of the box and involved a cup of water and some raspberry jam.  Bring on the wine.  Thank God all of my neighbors were kind as could be, and didn’t mind my ridiculous contribution (meanwhile, I made out like a bandit with an amazing assortment of Christmas treats!). 

Still, I refuse to accept defeat.  As you know, I am trying to reemerge as a “normal” mom, so I decided it was time that Gavin and I baked some Christmas cookies to bring to Nana’s for desert on Christmas Eve.  Year after year I get off the hook… I had a small baby, then two small babies, then Ty got sick… no one ever takes me up on my offer to bring a dish on the holidays.  I realize now that those life factors had nothing to do with it.  This, right here, is why they always say, “You can just bring the wine.  That would be a great help.” 
NAILED IT!
Behold.  Gavin and I made chocolate chip cookies from scratch last night.  We used red and green sugar sprinkles to be festive.  Gavin was excited for the first five minutes, then he hopped off the kitchen counter to play super heroes - totally leaving me hanging for the next hour.  Later he was excited to lick the bowl, then to eat a cookie when they were all done.  Yep, this is what childhood is supposed to be all about.  But then he was too wired to go to sleep that evening and had a slight belly ache – not supposed to happen.  In reality, the final product was burnt on the bottom and tasted like cr*p.  Meanwhile, one of my best friends sends me a picture of this:
"This is what I made for Girl Scouts tonight."

Now this is worthy of Pinterest.  Pin it, Kelly!  It's totally adorable.  I will share that with every mom group I know!  You won’t even be able to keep up with all the cookie swaps on your calendar! 

So here I am, three years later, wondering why I was never invited to another cookie swap (I kid, I kid).  But really, I know the reason.  Whether or not Ty was ever diagnosed with cancer, I’m not sure I ever would have made cupcakes like Kelly.  This muddy puddles mom admits that I can barely even sit still to color with my son for more than 10 minutes.  I simply wasn’t born to be crafty, or to bake, or to prepare the perfectly balanced meal, or to iron, or to make candy apples or… but I can tell you all about bloodwork and what the results mean, changing the dressing on a g-tube, flushing a mediport, setting an alarm every four hours for medication, using a suction machine, treating bacterial versus viral infections, signs of intracranial pressure, and too much more. 

I wanted to be the mom with the awesome cookies.  The cookies that everyone begged me for the recipe year after year.  Instead, I became this mom, and no matter how it all turned out – I consider myself extremely blessed and lucky.  As we all are.   Love you all so much.  Just for fun, here's Gavin at Karate tonight.  I heard the teacher asking Gavin what was wrong with his belt (I can't ever tie it right) and he said, "My mommy didn't know how to do it." :)  We're getting there.  



Wednesday, December 11, 2013

I'm gonna love you forever

“I love you, Mommy.”  
Gavin says that to me several times a day, out of the blue.  It is one of my most favorite things.  This morning he asked, “Do you know why I always say ‘I love you?’” 
“No, why?”
“Because I am gonna love you forever.”  And just like that, my broken bleeding heart burst with happiness. 

Today was a snow day.  We got bundled up and headed outside so Gavin could play while I shoveled.  I watched him as he stood with his mouth open, hoping to catch some snowflakes.  I watched him lay on the snow and look up into the sky in undisturbed silence for several minutes.   Everything is so quiet under the peaceful insulation of the snow.  It is almost as if the beauty itself has more clarity – at least I think so – and I believe Gavin was feeling that very same phenomenon.  I tried to leave him alone to enjoy the illusion of solitude in the soft and peaceful surroundings of our yard (with the exception of my scraping shovel that he scolded me for a few times). 

Later I took Gavin to see his very first movie in the movie theater - Frozen.  I know, he is pretty old for it to be his first, but he also never expressed any interest and he just can’t sit still for long.  For a movie that I thought was overall “Meh,” I was so impressed because he really took it all in and enjoyed every minute.  I know a lot of people really loved it, so maybe I just wasn't feeling it because I was in a bit of a cloud overall that day.  Regardless, he was such a good boy. 

Gavin at his very first movie - Frozen
At the concession stand, we bought a box of candy as a tribute to Ty, and I was so surprised when Gavin changed his mind after buying a box of peanut butter M&M’s (his favorite) and instead pointed to the box of Starburst in the window (Ty’s favorite) and asked me if he could trade.  Those moments keep me smiling, because they remind me that I don’t have to keep looking so hard for my angel – he shows me he is with us all the time. 

Ty at his first and only movie - Despicable Me 3D
In this video, Gavin is pretending to be a turkey hunter.  This is something Ty never got to do.  My experience of Gavin at 4 years old is so entirely different than what I experienced with Ty, for so many obvious reasons.  One of which includes his very different personality, of course, but watching Gavin with a feather in his hat, crouching around my house hunting turkeys for Thanksgiving with a pretend bow and arrow has me thinking “What would four-year-old Ty have been like if he never had such physical limitations?  If he attended preschool the way Gavin does and took home all the exciting things he learned like Gavin does.” 

Ty was limited to the couch.  He watched Max and Ruby incessantly.  Gavin watches TV, but with much less interest because he has the ability to go off and get lost in his Lego wars for hours on end.  Oh how I wish things were different for Ty.  Even if he wasn’t going to beat the cancer in the end, I wish he was able to be a normal kid before relapse.  When lamenting over this – which I do every day since that is my main focus here at the foundation – my greatest blessing is knowing it bothered me more than it seemed to bother him.   He smiled so easily despite the unfairness of it all.  

So while I am so brokenhearted over all the normal childhood activities that Ty missed out on, I am equally brokenhearted over the time I lost with Gavin from the time he was about 16 months old (when Ty was diagnosed) until just about now… when I am finally starting to reemerge as a completely different (but still pretty rad) person.  And I am finally capable of being the Mom I want to be for him. I am able to enjoy him.  To make memories with my G-man.   During our long drives, I used to joke with Ty and say, “It’s you and me against the world, right Ty?”  Now I share that same joke with Gavin and it warms my heart.  Healing happens.  

Tuesday, December 3, 2013

Christmas, Giving Tuesday, TLC Foundation Year-End Impact

"Crimpy" time is here
That's what Ty called Christmas, "Crimpy."  Thanksgiving came and went with delicious food and an overall quiet, ho-hum day - just as I wanted.  Perfectly appropriate given the void in our lives this holiday season.  Christmas will have to be different though.  Christmas is magic and Gavin is four, so we need to go all out for him and make it as wonderful as possible despite my conflicting urge to skip it altogether this year.

We went to our favorite tree farm and cut down the biggest tree we've ever had - as is our family tradition since moving to Pawling.  I looked for Ty everywhere but I didn't really feel him with me.  I could only feel the incredible weight of his absence.  I looked up at the sky several times, hoping for a hawk soaring overhead or clouds in the shape of his name.  One cloud kinda sort-of resembled a "T" but I know I was just forcing something that simply wasn't there.  I guess cutting down the tree is for Gavin, now.  It was his job to pick it out this year - passing on yet another torch from Ty to Gavin.  He is the big boy, now.  He picks the tree.  He hangs the first ornament.  He will be the only one jumping on the bed Christmas morning.  For Gavin, this Christmas will be filled with wonder and laughter and I am looking forward to it for his sake.

I am happy and surprised to admit that I am getting in the Christmas spirit.  Of course it is impossibly hard sometimes.  The last "toy book" I thumbed through for Ty was a Christmas catalog.  Every ornament on our tree has significance and memories, so we couldn't possibly finish decorating in one night.  It's emotionally exhausting so we are taking our time.  Slowly, though, it is coming together and it's beginning to look a lot like Christmas.  Look at G-Love ready to brave the cold like Santa.


Today Lou called me to tell me that our neighbors have put up the giant SuperTy lights up again this year. This is a family who does an INCREDIBLE job with their Christmas lights.  I mean, they have a full-sized tractor and antique fire truck in their yard covered in lights.  Candy canes the size of lampposts. When they added a SuperTy symbol to the collection last year, we beamed with such pride.  It was such an incredibly kind gesture, and the perfect tribute to our son who loved Christmas most of all.  We watched as they were setting up this year, uncertain if they would put it up again.  Of course, we understood if they decided not to make it an annual thing and we worried that they wouldn't include it again, so when Lou saw the board up today he called me immediately. We are so grateful and so excited.  Especially in the wake of the news that the town of Pawling decided not to include the gold tree in the town gazebo this year.  I still can't possibly understand that decision.  Was childhood cancer awareness only important last year?  Did they find a cure and forget to tell me?  But I don't want to get started down a path of negativity or accusation, so I'll stop there.  On the other hand, the City of Yonkers lit Town Hall gold and I couldn't have been more honored.

Just a quick update on the KIND contest.  Thank you so very much for voting and sharing (or at least, trying to vote).  The voting platform and website developed by Kind was highly flawed and dysfunctional which left a bad taste in my mouth.  I kind-of gave up when I saw my competitors seemed to know something I didn't know, and I'm sorry I pushed you all so hard but I'm still so incredibly proud of the amazing support from each and every one of you!!  Regardless of the outcome, our turnout was nothing short of amazing,

Giving Tuesday - The TLC Annual Appeal
Many of you may have already received our year-end update on the TLC Foundation and our annual appeal on Giving Tuesday, but for those who missed it, I am pasting it below to inform everyone of our first-year successes, and shamelessly remind you all that today is a day that has been designated for charitable giving. Please consider making a donation http://givingtuesday.razoo.com/story/Tlcgivingtuesday.  Thank you :)

2013 Year End Impact Report
Now that Black Friday, Small Business Saturday and Cyber Monday have come and gone, we thought it would be appropriate to reach out to friends of the Ty Louis Campbell Foundation with a year-end update on the day that is now dubbed, Giving Tuesday.  We set up a fundraising page for Giving Tuesday with a year-end goal of raising $5,000.  If everyone on this distribution packed a lunch or skipped the Starbucks for one day and instead donated $5, we would reach that goal in no time!   Just click on the following link http://givingtuesday.razoo.com/story/Tlcgivingtuesday. We will keep the fundraiser open all week and I am proud to report we are more than halfway there already!

Giving Tuesday is intended to be a reminder to make a charitable contribution at the start of the holiday giving season, but it is also a day where we wish to reflect on the impact that all of your previous giving has made in the world of fundraising for childhood cancer research.

We can't believe one year has passed.  And what a year it has been!  In December 2012 we walked into the office of the newly decorated Ty Louis Campbell Foundation for the very first time, and it is our favorite place to be ever since.  Thanks to a handful of dedicated volunteers, walls were painted, carpets were stripped, furniture was delivered and computers were donated/installed.  We were ready to continue what Ty started by fundraising for childhood cancer research through the newly established Ty Louis Campbell (TLC) Foundation.

Fast forward one year, and even we are happily surprised by all that has been accomplished, and we have you each and every one of you to thank. Your generosity will help us fund innovative research geared toward the discovery of safer, more effective treatments for the deadliest of childhood cancers.

OUR FUNDRAISING SUCCESS
1 - YOU.  Everyone on this email list has made a donation or purchased a ticket to a TLC fundraising event.  Each and every one of you... your fundraising efforts, your volunteered time, your donations, your participation in various events... is fueling the fight against childhood cancer.  Through miscellaneous events and contributions, we have raised more than $130,000 to fund innovative, life-saving research.

2 - THE MUDDY PUDDLES PROJECT raised more than $70,000 for childhood cancer research, and our inaugural event was attended by approximately 2,000 people!  We hope you will join us again on August 9, 2014 at Camp Kiwi, NY.   SAVE THE DATE!

3 - FIRST ANNUAL TYATHLON (triathlon, 5K and kids obstacle course) in Mahopac, NY was a huge success, raising more than $65,000 for the cause.  We hope you will join us again on September 27, 2014 - SAVE THE DATE!

4 - GO GOLD INITIATIVES. This September we had various activities taking place all over the tri-state area and beyond.  In fact, more than 68 sports teams wore gold in New York, Connecticut, New Jersey, North Carolina, Arizona and California!  Hundreds of homes and storefronts donned gold lights and gold ribbons and our local stores and restaurants took donations at the register.  These "Go Gold" initiatives raised over $12,000 and we expect that number to double in 2014!

5 - ROCK THE HOUSE The TLC Foundation was welcomed in Dallas, TX when we were the beneficiaries for the first annual Rock the House fundraiser at Rockhouse Studios.  Everything is big in Texas, and our friends made sure those words would ring true, bringing in more than $35,000 for the cause.

6 - PRET*TY.  In support of our efforts to raise awareness by "going gold" we also launched a new line of beautiful, charitable jewelry named PRET*TY (Ty inspired the T-Y in PRET*TY).  Finally, colorful silicone awareness bracelets are NOT the only option!  In our first month, alone, we grossed more than $11,000!!  Be sure to visit www.prettystore.storenvy.com when shopping for the holidays this year!  We have the perfect gifts that give back with 100% of the proceeds benefiting TLC.

7 - VISIBILITY.  Since Ty's passing, we have seen tremendous visibility for the cause.  We appeared on national news segments including The Doctors, we had celebrities talking about Ty including Chris Evans (Captain America himself) and Taylor Swift, we presented about childhood cancer awareness at the Sohn Conference to more than 2,200 attendees and we have grown in our social media community to include more than 18,300 fans on Facebook.


WHERE DOES THE MONEY GO?
We are so proud to share news about our research investments thus far.  We feel a tremendous responsibility to make sure each and every penny is placed in the hands of the most promising researchers.

ST. BALDRICK'S  
As partner with St. Baldrick's, the TLC Foundation has agreed to co-fund a minimum of 1-2 large research projects annually.  Since 2005, the St. Baldrick's Foundation has awarded more than $103 million to support lifesaving research, making the Foundation the largest private funder of childhood cancer research grants. Funds awarded enable hundreds of local institutions to participate in national pediatric cancer clinical trials, which may be a child's best hope for a cure.  This partnership enables TLC to leverage their world-renowned Review and Advisory Board, helping us to make the most informed investment decisions.   For more details, visit http://bit.ly/16nJI8H.

THE CHILDREN'S BRAIN TUMOR PROJECT AT WEILL CORNELL
We are proud to help fund such an innovative initiative with the introduction of the Ty Louis Campbell Fellowship at the New York Presbyterian/Weill Cornell Medical Center. Because so many different types of brain tumors are considered rare, such tumors simply do not get the funding that researchers need to find a cure. The Children's Brain Tumor Project at Weill Cornell offers physicians the unprecedented ability to quickly analyze the genomic data of a tumor, allowing for personalized tumor therapy and affording new hope to patients. With that individual genetic information in hand, researchers hope to identify alternative delivery methods and drugs that specifically target each young patient's tumor.


And this is only the beginning.  Thank you for your continued support.  We look forward to sharing even more success in 2014!