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!




  

Saturday, November 30, 2013

Less Than 12 Hours Left to VOTE

We were in the lead for days, and we dropped into third place overnight.  We don't have any tricks up our sleeves or mailing lists left to distribute to. We just have a loving and committed group of families who have been so wonderful and supportive every step of the way.  Even if we don't win, the response has been incredible and Ty would be so proud.

That being said, let's still try to win!  If every person who reads this blog votes all four times in the next 12 hours, we would be back in first place in no time at all!  And we still might win that $10,000 for childhood cancer research! 

http://projects.kindsnacks.com/project/muddy-puddles-project/?start=voting?start=voting

I know the website is rather dysfunctional and it isn't working properly for everyone (including me),.  I appreciate that you all keep trying, though, because every vote counts!


Cindy

Thursday, November 28, 2013

Giving Thanks for Ty and Missing Mely

It comes on so suddenly, these waves of tremendous sadness.  But like the tide, they come in and they go out.  The sadness comes on suddenly, and then it is gone again.  It might last minutes, hours, or days.  But it does pass eventually.  Until it comes back again.  And that’s okay.  Such is life.  I have finally learned to just relinquish the illusion of control and accept the fact that I have none.  That bad things happen to good people.

Lou and I, we are doing so great.  Then, we are not great at all.  Thanksgiving certainly doesn’t help – nor does any holiday.  But this holiday?  Knowing what comes next?  Trying to be thankful for all of my blessings!  I can’t even remember Thanksgiving last year.  Not one thing about it, I swear.  I’m not sure it ever even happened, because I guess I wasn’t mentally here to even witness it.

When someone wishes me a “Happy Thanksgiving,” my mind screams “f*ck off – what’s there to be happy about it? What do I have to be thankful for?” But I promise it is just for a tiny split second, and before I can flinch I feel genuine gratitude for the kind gesture.  I am sincere when I say “Happy Thanksgiving,” in return and I truly appreciate the thoughtfulness behind the well wishes.  It is good and kind that people wish one another a Happy Thanksgiving, and it’s not anyone’s fault that I am suffering a tremendous loss underneath this facade.  I will be okay.

Thanksgiving before cancer was a great day.  The much anticipated long weekend was filled with delicious food, football and family.  The air slowly being lifted as the day progressed and the Wednesday workday started coming to a close.  It was as if everyone was secretly thinking the same thing… we’re almost free!

When Ty got sick, Thanksgiving - for the first time in my life - was more about giving thanks than ever before.  The true magnitude of how thankful I was became so very clear to me.  I didn’t wallow in the fear or get angry because he was an innocent victim to this disgusting disease.  Rather, I permeated infinite gratitude that he was still with us.  It wasn’t until the possibility of losing him became such a reality that I realized just how lucky I was. How I wish I could wake up tomorrow to his warm breath and beautiful face right next to mine.

Tomorrow I will be thankful for ever having had Ty at all, no matter how short his life was.  Like I always say, it is fitting that his name is also representative of the abbreviation for "thank you."  Such things don't happen on accident. Of course, I will be thankful for Gavin, who is my sole reason for living and smiling in this new life without Ty.  And, I will be thankful for Lou, who is the only person who is truly with me on this ride.  Sitting right next to me, hands in the air, screaming at the top of his lungs right alongside me.

I will also be thinking about Mely.  This will be our first Thanksgiving without her (she stayed with us through Christmas last year).  Lou and I were talking about her just a few minutes ago, and thinking about what a wonderful Mom she will be some day.  I mean, that poor girl came to live with us on a wing and a prayer!  Yes, she knew Ty had cancer, but never could she have been prepared for this crazy family she was about to live with.  If I was ever faced with such a deep reality of life at the ripe age of 22, I surely would have run the other way.  It takes a special person to embrace it like she did. I love her like my own sister.

Last year, when living without power as a result of Hurricane Sandy, Mely shared stories about her time as a young girl, when they lived without power during the war in Bosnia. Our conversation began after I tried making instant coffee by boiling water on the BBQ grill one morning, and our coffee ended up tasting like cheeseburgers – BLECH!  It prompted Mely to tell us about how her mom would make her  treats on the stovetop flame during the war, and how one day her father came home with a bag of oranges.  She remembered how she and her brother devoured the oranges in under an hour, for they had rarely ever had such a fantastic treat in all their lives.  For the first time in the two years that she lived with us, I thought to ask her, “How long were you without power in Sarajevo?”  Can you guess?  It was years.  For almost four years, on and off, she grew up without access to electricity.  As a young child she had to meet on the street corner for school every morning.  They changed the location for school on a daily basis so that the children would not be an easy target during wartime.  Her mother was seriously injured by shrapnel while hanging laundry out their apartment window.  Her parents dodged bullets to get drinking water for their family.

Then, as a young adult, she came to America as an au pair to experience something new and to gain opportunity.  Never could she have imagined she would end up being part of our nutty family, and helping care for our son who was dying of cancer.  Our beautiful son, who then got better and gave us so much hope, only to die in the end.  She laid next to his still body.  She held his hand and kissed his cheeks.  She left her tears on his face.  I’m not sure I was capable of understanding such love at such a young age.  Tonight, I go to bed grateful for how much I love her, and for how much she loved Ty.

Angelina Jolie made a movie about the Bosnian war entitled, “In the Land of Blood and Honey.”  I remember watching it with my Mely and I was on the edge of my seat the entire time with such painstaking anxiety.  To this day it keeps me up at night.  Maybe that is how she was so capable of loving so deeply, and understanding with such maturity.  To understand the beauty that lies underneath the pain in life, you need to experience the pain.  And that she did.  Mely, my little sister, how I miss you.  Thank you, God, for letting her into our lives like you did.  I’m not sure we would have ever survived otherwise.

I guess I felt I needed to share some Thanksgiving perspective before going off to bed tonight.  To help us all remember why we are thankful tomorrow.  Please remember all of the children in hospital beds.  All of the families who lost a child.  Remember the last piece of fruit that went rotten on your counter and think of Mely and her oranges.  There is only one day a year that we are responsible for reflecting on what we are thankful for, so in between the football and the feast, let us all remember to do that.

And, for Pete's Sake PLEASE continue to vote and share this contest.  It is keeping me up at night like you can't imagine. We are back and forth for first place, right now by only two votes.  TWO VOTES.  You can each vote up to four times, and many people are able to vote daily. Talk about every vote counting!  I am so grateful and humbled by all of your support thus far, and hope and pray it will continue until the vote ends at midnight on November 30th!  If we win first place, we will be awarded a $10,000 grant for childhood cancer research.  Please, keep voting.  Keep sharing.  If there is an email group at work you can encourage to vote, please do.  If there are other means you can think of to spread the word, please do so.  We are back and forth between first and second place, and every vote truly does make a difference.  Thank you.  Happy Thanksgiving!

CLICK HERE TO VOTE - PLEASE PLEASE PLEASE


Friday, November 22, 2013

Be KIND. Vote for the Muddy Puddles Project

I'm so excited to announce we have a chance to win a $10,000 grant from the KIND company - vote for the Muddy Puddles Project PLEASE! It will only take a moment of your time. Seconds, really. Please share with friends & family to vote too.

CLICK HERE to vote.  We really need to get a lot of people on board so please share as much as you can. Thank you!


In the meantime, we have been so busy preparing all of our end of year reports, filing our tax return, writing our holiday cards and preparing our end-of-the-year newsletter.  We have had one heck of a wildly successful year, and I am forever grateful to you all. 

Sunday, November 17, 2013

Cream Cheese on Crackers for Dinner

Cream cheese on crackers for dinner.  That just happened.  Now I'm watching Gavin eat in front of the TV, eyes wide with satisfaction over winning tonight's dinner battle with barely a fight.  I rattled off a number of options for dinner tonight, he told me "crackers with cream cheese," I said "no," he said "yes," I said, "ok."  Then he said "in front of the TV!"  I said, "no," he said, "yes," I said, "ok."  And that was that. As I put the tub of cream cheese back in the fridge, I took a giant scoop and licked it off my finger.  I poured a big glass of wine and here we are. 

Gavin and I truly had a good day today, and I really needed it.  Lou went down to Long Island to celebrate the Bar Mitzvah of our friends' son while I was supposed to be at a baby shower, but I just didn't have it in me.  I haven't been feeling very social, so I opted to stay home with Gavin instead.  First thing in the morning we went to gymnastics and on the way home he said, "Mommy, did you have your coffee today?  Maybe you should get one."  He knows how much I love coffee, and I told him I wanted to stop on my way to class but we were running too late.  My big boy was taking good care of me.  Then he said, "I can't wait to get home today so I can play with you all day and night, and watch movies and eat snacks!" 


I believe that moment right there determined the kind of day I would have.  Which turned out to be a nice, easy day at home.  And days at home are so rarely nice and easy for me.  What a treat.  I enjoyed Gavin.  I folded laundry.  We made a fort.  We played with silly string (by the way, I clearly underestimated the mess I would be faced with afterward.  I should have learned from the various other times I let my kids loose with silly string around the house. #somepeopleneverlearn.)

Even Lou gets down with the silly string

Last night I didn't sleep well at all.  My mind was rolling while I reflected on the previous day.  Lou and I took Gavin to our friend's house for a movie and they have four young boys.  I was reminded how very easy our life is these days, compared to our friends' buzzing, busy household.  Not easy emotionally - just the opposite, of course - but physically easy.  Gavin is a big boy now.  He can dress himself, although he rarely wants to.  He gets himself a snack and juicebox from the pantry if I'm busy.  He attends a full day of preschool every day without complaint.  He plays so nicely by himself for hours.  He is a whiz on the i-pad.  He is growing up and all I am left with is the wonder.

How and when did he get so big?
Where did my baby go?
In this year of fog and sad haze, how did he even manage to keep growing?


Everything in this life without Ty feels wrong.  When we pile into the car to go somewhere as a family, his absence is so very heavy.  When we take Gavin somewhere special, like a birthday party, the park or even the toy store, we watch him having fun while exchanging warm glances that mean "I wish he was here," or, "Ty would have loved that."  When we go to sleep at night and when we wake up in the morning, Ty is the first person we think of... the first person we look for.  Every time I see two brothers together, my heart hurts. 

I feel him with me every day.  I know he is still here - that he never really "left" - and while that brings me comfort it certainly doesn't help me miss him any less. 

My day-to-day life went from 100% stress, fear, physical exhaustion and 24-7 parenting, to a very simple routine of school/work, go home, dinner/bath/bed.  Sometimes Lou and I even watch TV at night, a luxury that didn't exist for years.  I hate it.  It feels so wrong.  I want to worry about Ty's nutrition and blood counts.  I want my conversations with Lou to focus on whether or not Ty pooped today, if we think his mobility is improving at all, if he had any headaches today, and whether or not the latest tweak to his daily medication is helping at all.  When I am heading south on 684, I am often tempted to keep driving right down to the hospital.  To pull into the parking garage, say "good morning" to the attendants that I recognize so well, to walk the underground hallway to the elevator so I can imagine Ty's giggles when we pretended to race up the ramp.  "I'm beating yoooouuuu!"  To see Mary, the only nurse who he was never afraid of (they were all such wonderful nurses, but that Mary had extra special magic powers).  To visit the gift shop where that one special lady always swooned over Ty.  I wonder if she knows he died. 

I miss the familiar faces of the kids and their families, and I wonder about so many of them.  I just want my life back - even though it was a life no one would envy - that's because no one can understand what a special place the ninth floor is, and how lucky I am to have had Ty in my life regardless of how short my time with him was. 

We are doing well, and there is a huge gift that Ty left me and that is my new job.  I absolutely love going to work at the foundation every day.  In my previous life, I worked for the income. Of course I felt accomplished and I had pride in a job well-done, but I never, ever loved my job.  I never even really liked my job!  It occurred to me that I should look for a more fulfilling career, and I often thought about working for a nonprofit, but it took me a long time until I made a comfortable salary where I could buy the shoes if I wanted to, and the thought of compromising my income for a more noble career prevented me from pursuing a different job.  How wrong I was!  I gave up my career and my income to work at my own nonprofit, and I couldn't be happier.  When I used to count the days until my next vacation, now I actually miss the office on my days off. 

Most of life is spent working and sleeping, with a few hours in between to make dinner, clean the house and spend time with my family.  I feel so blessed to finally spend that time working on something that makes me feel good.  That honors Ty.  That enables my son's legacy to continue inspiring others and make a difference in the world.  I firmly believe that he still has work to do, and I am helping him carry on with his mission this side of heaven.  Me, Lou and the dozens of wonderful, beautiful, committed volunteers who work alongside us. 

IN FACT, BECAUSE OF TY A LIFE MAY BE SAVED
You may have already seen this exciting news on the foundation Facebook page (and if you don't "like" us, please do! www.facebook.com/thelittlefighter)... but we received the wonderful news that our friends at Love Hope Strength found a bone marrow match at our first inaugural Mess Fest back in August.

We were thrilled to have them set up a booth at the event, which was attended by approximately 2,000 people!  All day long, volunteers tirelessly swabbed the cheeks of hundreds of willing attendees in the hopes that someone would be a bone marrow match for a person battling cancer in need of a transplant.  As it turns out, one of our attendees was, indeed, a match!  A life may be saved thanks to the most unselfish acts of others.  I can't even tell you how excited this news makes me. 

I sent away for a kit years ago, and it is the easiest thing to do.  If you are interested in registering, visit www.deletebloodcancer.org for information on how to sign-up.  It is 100% free through this site, they ask only for an optional donation to cover the cost of the test.  Like I said, that is optional.   It is more important that they build the registry and find a match so if you can't cover the cost I highly encourage you to register for a swab kit regardless!  What matters is that these cheek swabs are so simple, and they are saving lives.  CLICK HERE for helpful answers to the most common questions about cheek swabbing and bone marrow transplants.

UPDATE ON SUPERMAX
Max is home from his recent surgery, with the same scar Ty had.  He reminds me so very much of my baby.  Max is so incredible.  We are thrilled that he is recovering well, but his parents were told that he needs to begin treatment again.  Please send your thoughts and prayers his way.  He is a fierce cancer fighting ninja, but your support always helps to empower these kids even more. 

Photo: Out of exhausted silence on the way home from the hospital today SuperMax asked me, "mommy, wouldn't it be awesome if they could stop cancer?" He then quickly followed up before I could respond and said "it would be even better actually if cancer never existed." Yes, my sweet boy, that would be the best. 

Stay fierce with us. Let's do this! ⚡️Audra, Max's Momma
 
Out of exhausted silence on the way home from the hospital today SuperMax asked me, "Mommy, wouldn't it be awesome if they could stop cancer?" He then quickly followed up before I could respond and said "it would be even better actually if cancer never existed." Yes, my sweet boy, that would be the best.  - SuperMax's Super Momma







Thursday, November 7, 2013

Happy Birthday Daddy and THE MEDIUM

Yesterday was Lou's birthday.  I put together a tribute video for him to try and recreate the happiness he and Donna gave to me on my birthday.  Although it doesn't compare, it was still a great representation of the true love between Daddy and Ty.  I couldn't have asked for a better man to go through this with.  He is my rock, and Ty loved his Daddy so very much.  I tried to find video clips of home movies that Lou hasn't seen in ages, and pictures that we don't look at as often.  He loved it.

http://youtu.be/mYE2D67IBqA

It happened to me today.  Something that hasn't happened in a really, really long time, if ever.  I was on Facebook or something meaningless like that, thinking of Ty, and for a moment I forgot he was gone.  When it hit me that he died, it was like I felt it for the first time all over again.  It only lasted seconds, that feeling of shock, but it was so powerful.  Does that happen to people after losing a loved one?  Even one year later?  I couldn't believe how strong and real it felt.  My poor bleeding broken heart took another beating for a brief moment and it left me in a state of fleeting shock and confusion.  Surreal.  That's the only way I can describe it.  

I am so proud of the foundation and all we have accomplished in our first year.  We just established funding the "Ty Louis Campbell Fellowship" at Weill Cornell, which means there will be a dedicated lab researcher supporting the Children's Brain Tumor Project - which is bringing individualized treatment protocols to children with rare and inoperable brain tumors via genetic sequencing.  It is very promising and I am so happy to be supporting it.  And that is only the beginning of several research investments we are committed to over the next few months.   Not to mention that we planned out 2014 during a recent board meeting and we have some AMAZING fundraisers planned.  TLC is here to stay, and already we are making a difference!!

Speaking of making a difference, we are big supporters of the Truth 365 campaign.  The recent government shutdown brought children fighting cancer to the forefront.  At the time, many of our elected officials stated their unwavering support for childhood cancer research.  Now it's time to turn those words into action.  Please watch and share THIS VIDEO via social media to help raise awareness and to support this awareness campaign.  #thetruth365film

Awareness = Funding = Research = Better Treatment Options

The Medium
So, a few months ago my friend Kristi mentioned that she made an appointment with a medium - Psychic Sandy on Long Island.  She had been on a waiting list for over a year, and asked me if I would be interested in hosting a party with Sandy where she reads for an entire group.  I talked it over with my mom and we eventually agreed to have a "medium party" at her house in Wantagh.  My friends, My mom's friends and Kristi and her friends would all get together for a fun night. 

To be honest, I am so 100% confident about my spiritual connection with Ty, that I didn't think I needed a medium to validate that for me... but regardless, she not only validated that Ty was there and communicating with her on some level, the entire experience left me feeling really good above all things.  I can honestly say that no matter what you think about the psychic, at the end of the night we all had a lot of fun!  We were on the edge of our seats for 2.5 hours listening to some pretty amazing stuff!!!

I could write a book about the various people in the room, their stories, and what Sandy told them, but instead of sharing such individual details I will just focus on what Ty shared for me, and a few other key conversations from that night.

When Sandy asked "who lost a child?' she looked in my direction immediately.  I raised my hand and she dove right in.  She said some very interesting things, like (and I have to paraphrase):
"He had something very rare.  Like a long word that can be abbreviated.  He keeps showing me the word 'supercalafragilistic' to describe what he had."
Yes.  He had an extra-renal atypical teratoid rhabdoid tumor.  Abbreviated by AT/RT.
"He has a brother.  His name starts with 'G.'  I can't quite get his name, but I keep seeing my daughter.  For example, my daughter's name is Gianna, and we call her 'GiGi'.  Is it something like that?"
Yes, his brother's name is Gavin.  Ty used to call him "Ga-Ga."
"Do you wear a special necklace for him?"
Of course I do.  There were seven of us in that room who wear the same locket/necklace for Ty.
"He is telling me that you went to Manhattan often"
Yes.  He was treated at memorial sloan kettering in NYC. We spend a lot of time there.
"He wants you to know that he didn't know he was sick.  He was happy.  You spent a lot of time in the car, and he enjoyed that time with you."
Yes, at least two hours a day in the car.  Back and forth from treatment.  I was so happy to hear that he didn't know he was sick.  That was one of the two things I asked him to talk to me about. I often worry about what he was thinking.  If spending all that time in the car was draining for him.
"He says he had a special hat.  I am being drawn to that girl's red sweater."
Yes, he wore a red fedora often before he got so sick.  It was his trademark hat.  We even included it in a statue that was recently sculpted as a tribute to Ty. 
"He says you laid down with him.  Many parents sit at the bedside, hold hands, or kneel... but he's telling me you were laying with him, and he knew you were doing that."
Yes, in fact he was in my bed for an entire night after he died.  I read him books.  I laid with him for hours.  We slept in bed together every night for over two years straight, too.
"You cut some of his hair and kept it."
Yes.
"He wants you to know that no matter what you did, even if you chose different treatment or tried something else, you never would have saved him.  That you did all you could do, and his disease was too far gone there was nothing you could have done to change the outcome."

This was my most important message.  Now that I am raising so much money for research, I constantly question - what if we found this study in time for Ty?  I wish I consulted with this Doc, he is doing amazing things.  Maybe that would have made all the difference!  Before the medium, I asked Ty to send me a message about this above all.  I wanted to know if I did all I could do, if I made good decisions, and if the ladybugs are really from him. 

As for the ladybugs, all she said was "Yes, I don't know how or why, but kids are always sending ladybugs, butterflies, red cardinals, etc.  Don't ever doubt those signs, because they are so very real."

After the reading from Ty - and there was a lot more than what I listed above - the medium mentioned that Ty had an "army of men" behind him.  She specifically said his Uncle was with him.  "Who is James?" she asked to the room, and my sister-and-law and I were in shock.  Uncle Jimmy!!

Lou and Debi lost their older brother just six weeks after Ty was born, and the details the medium described about his life were just so incredible.  She knew everything about him.  Details that no one could just pull out of thin air like that.  Painful memories that no one knows about.  No one can make this up.  No one can get this kind of information from Google.  It was real.  It was totally mind-blowing.  And it was beautiful.  All I know is that hearing her share about Jimmy and all he endured made me a solid believer in her gift.  I didn't need much reassurance to know that Ty is with me every day because I feel him, and because I see him in the world around me.  But to hear from Jimmy, that was just a beautiful experienced that validated that he is finally resting in peace.  Which is all we ever wanted for him. 

She also spoke to my childhood friend (we have been great friends FOREVER) who lost her mom when we were 18.  She told her that her mom was inside her house at the time of the reading!  She then proceeded to describe the inside of my friend's house with such exact detail it was making my head spin.  It was so cool, that's all I can say.  She knew what the entire inside of her house looks like!  Exactly!

You don't have to believe in the medium.  I still don't even know what to make of it.  All I know, is that the room that night was filled with nothing but loving messages.  So there's no bad in that. 

Goodnight, Ty.  I miss you and love you so much.  Even during your most difficult days... when cancer stole your ability to move your arms or even hold your head up... you lived life to the fullest and smiled every step of the way.  You are amazing, little man.  I love you super duper big much always and forever.  Just look at your smile here.  SuperTy indeed.  My little super hero. 


Sunday, November 3, 2013

Quiet day with the whole family

I say “whole” family because Ty was with me all day today.   From the second I woke up I was thinking of him.  I snuck out of my bed without waking the other boys, and quietly enjoyed a cup of coffee while thinking about Ty and looking at the beautiful picture of him in front of me on the counter.  I felt so at peace.  Sad, but at the same time his presence was very warm in my heart.  We had a group meeting with a medium at my mom's house on Friday night, it was incredible, so I was reflecting on all of that and feeling good.  There was a lot about Friday night that I will have to save for another post, but for now I can say it was a beautiful experience at just the right time, because I was coming undone just before that. 

Later this morning when I got dressed, I pulled out an old pair of jeans and put them on in an effort to decide whether or not it’s time for goodwill.  In the back pocket I found one of Ty’s Spiderman stickers from the hospital.  It crushed me and took me a while to shake it off.  I was immediately stuck in the hospital world, remembering all of those countless days, and wanting them back.  I envy the parents who get to lay in a hospital bed with their child and watch a cartoon while deciding what to order for lunch off the hospital menu.  To have an entire afternoon with nothing to do but snuggle that child.  I know, who would envy the parent of a kid with cancer (?) but there are some things about the day-to-day parenting experience with a sick child that are truly beautiful and simply incomprehensible to any outside observers.  Those days were so special to Lou and I and we would do anything to have them back. 

Gavin was doing some sticker art later today and he asked me to help him peel the backing off of one.  Wouldn’t you know it was one of the sparkley star stickers that Ty brought home from the hyperbaric oxygen chamber?  Every single day Ty would wear one on his shirt after his treatment, and he would always ask to bring one home to Gavin, too.  I guess I put a bunch of them in the sticker box, and it was such a treat to have that reminder, today.  I haven’t thought about those star stickers in a long time! 

Lou’s birthday is on Wednesday, so I spent over an hour on the computer watching videos of Ty in an effort to find one very special video of Ty saying his prayers with Daddy.  Gavin would often hear the videos and ask to jump up on my lap to watch a couple here and there.  I think he really enjoyed seeing Ty and him when he was younger.  At one point he got off my lap and slipped.  He hit his hand and started crying so I picked him up and he asked me to take him upstairs.  Of course, on the stairs right in front of us was a huge ladybug.  Impossible to miss :) We both watched her for a while before moving on to something else.  What a treat!!!  Thanks for the visit, again, Ty! 

On our way back downstairs Gavin was like, “Where did the ladybug go?”
“I don’t know, I guess she left.”
“What? But how could she leave if there are no open doors or windows?”
“The question is, how did she get in if there are no open doors or windows?”
Confused.  Then he gets it.  “Ty!” 

Then, after dark, I had to go outside to get a few things from my car.  I looked up, of course, and there were a bazillion beautiful stars above.  It’s been a while.  It was so quiet, and so beautiful.  They were all winking at me.  It was a great day. 

Before I go, I want to also share about Halloween.  You know, it turned out to be a really, really good day.  We have never really had a great trick-or-treating experience because either the kids were too young or Ty was too sick.  We would take them while it was still light out, barely any neighbors were even home, Ty lasted maybe ½ hour and we would go home so he could enjoy giving out the candy after dark when everyone came to our house.  This Halloween I realized that Gavin never really had a good Halloween because of that (not to mention no power the past two years), so we decided that we would meet up with some other kids and he would go trick-or-treating after dark.  I couldn’t believe how many kids were out in our neighborhood, and just how great everyone decorated for the occasion!  He got dozens of full size candy bars (what!?!?!) and one lovely neighbor even treated the grown-ups to a frosty beverage along the way (double what!?!?!?).  It was great! 

It doesn't really light up, that is a totally cool reflection of the flash
Gavin was "Iron Patriot."  There is a story behind the costume.  He had been telling Lou and I that he wanted to be Iron Spider for weeks.  He makes pretend he is Iron Spider all the time, and makes me be someone named "White Tiger."  I have never seen or heard of either, so I always imagined he was making all of it up.  He would tell me, "oh yes, Mommy, Tony Stark made an iron suit for Spiderman one time, and that's when he's being Iron Spider. And Iron Spider fights with White Tiger in the Ultimate Spider Man.  Not Spectacular Spider Man or Amazing Spider Man.  He's only in Ultimate Spider Man."  Clever, but I still wasn't buying it.  Then we were in Costco of all places and he almost hyperventilated when he saw a real Iron Spider costume.  I got so excited, too, because it was $15!  Done.  Or so I thought.  Then we had a party a couple of weeks before Halloween and he was so upset because the costume was very itchy.  A couple of days after that he came home from preschool and said that none of his friends like Iron Spider.  He needed a new costume.  I didn't budge on it for a while thinking he would get over it, but when I was away last weekend Nana and Daddy were on a mission to get him his next favorite costume, Iron Patriot.  I have to admit, he loved it so much.  I was so happy for him on every level this year.  Finally, Gavin gets to have a Halloween!  He is sad it's over already and told me to never get rid of his candy :)  He wants to keep it forever!

The next day we drove down to my mom's house for the medium party - more on that later - and Saturday morning we attended mass for All Souls Day.  Lou, Gavin and I went alone, we were given a candle for Ty, and it was really a nice tribute.  Later we had a foundation meeting, Gavin had a friends birthday party that afternoon and we got together with friends to celebrate Lou's upcoming bday on Saturday night - these past few days have been non-friggin-stop.  A piece of Halloween candy is calling my name and then it's off to bed for mama bear.  xoxo.

Thursday, October 31, 2013

One year later and I don't feel better

My head is just reeling.  I am not even sure what I want to say tonight.  Obviously, I am so sad about Halloween tomorrow.  Every time Gavin's eyes light up over the prospect of putting on his Ironman costume tomorrow (Iron Patriot, to be exact) I am reminded of Ty in his Iron Man suit.  My plastic pumpkin is sitting by the door filled with all sorts of gross, spooky Halloween candy that Ty would have loved (like gummy organs and chocolate ears and bags of "blood") but it doesn't bring me any joy because Ty wasn't here to look at the catalog and pick them out for me.  I promised him I will always have great candy on Halloween, and I hope he knows that I am keeping that promise.  He enjoyed opening to door for trick-or-treaters and giving out candy more than he enjoyed trick-or-treating himself.  Tomorrow I will reluctantly carry on the tradition for Ty - and of course, for Gavin.

There has been so much about this one-year anniversary that has been making every day harder than usual.  I was doing so well for so long, and lately all of the tiny little pieces that I was slowly putting together began to crumble again.  Lou has been going through the same emotions.  One year later and the pain of losing our son feels so much more real.  It feels like we spent a year surviving, getting by, learning to smile again, escaping... and now we are faced with the reality that it still hurts just as much and the only difference is that 365+ days went by and he still isn't coming back. 

I got in my car last night and it was the first time there was a real winter chill in the air.  I drove around thinking about how soon these trees would be covered in snow.  Then I tried to remember last winter, and I couldn't dig up one single memory.  I thought to myself, "I know I lived an entire winter without Ty, but I can't remember how?  What was I doing every day?"  Technically, I know the answer of course.  But in my mind it's like it didn't even happen.  Apparently, I am not alone in this phenomenon.  I keep in touch with other grieving parents and I guess this whole one-year sinking-in feeling of all-around awfulness is part of the grieving process.

I have also been weighed down by tremendous guilt lately.  Guilt that in my heart of hearts I know I don't deserve, but I can't stop it from suffocating me.  I am consumed with thoughts of Ty's suffering.  I was his Mommy.  I was supposed to make it better.  To protect him.  And instead, I stood by his bedside, helpless, holding his hands while he begged me to stop the nurses from sticking needles into his chest.  And those needles were the least of the horrors that he endured, all while I stood by watching.  Whispering "I love you, everything is going to be okay."  Lies.  It was all lies!  How can I even live with myself? 

When he was home during his healthier cancer days, we still had to go to the hospital to get accessed for bloodwork every week.  He always seemed to know something was up.
"Mama?... Where we goin?... Mama?.... Where are we driving to?" with worry in his voice.
"I don't know baby, just for a drive," I would say, so he wouldn't scream and carry on the entire 20 minutes.  Every time I pulled into the parking lot the tears would flow and screaming ensued.  He would beg me not to go inside.  I wonder if he felt betrayed.  One time he got so physical with me, he "escaped" down the hospital hall - scooting away from the blood lab and screaming "no, no, no I won't let you do it!"  How defeated he must have felt every time to have NO CONTROL in those decisions.  He was proud to have gotten so far down the hall, only to have me reluctantly march over and pick him up to bring him back to the room. What choice did I have?  I wonder if I should have handled that differently.  In hindsight, I think there are a lot of things I should have handled differently.

Please understand that this is a cleansing for me.  It feels good to release the truth about what I'm thinking when I reflect on Ty's treatment.  I know that we did all we could do.  Every decision we made for Ty was made out of pure love, with his well-being the most important factor.  We had such tremendous hope that all of his suffering would reap the greatest reward and he would go on to live an incredible, inspiring life.  Now I just need to learn to accept that we didn't make any wrong decisions.  That the outcome was never predetermined, and we did all the right things to try and save our baby.  It's just so unfair that we even had to make such decisions.  It's even more unfair that he won't be putting on a costume tomorrow.  He was just a little boy.  A sweet, innocent, perfect little baby.  And he was mine - I consider myself the luckiest person alive, regardless, because of that fact alone. 

Our entire family has been pretty in sync lately.  Even Gavin was having one of those days today.  He mentioned his brother twice today, once when he saw the letter "T" and once when he was telling me about how he wants to draw a family portrait for Lou's birthday present (Lou's bday is next week). 
"I will draw you, me, Ty, Mely and DAD-DY!" he said proudly

After his bath he made a sad face in the mirror.  He asked me if I remembered when he cried for Ty and said "I want Ty to stay."  I said, "yes, I remember, and I wanted Ty to stay, too."
"Bad God!  I am MAD at God."
"No baby, don't be mad at God.  God helped Ty get better by bringing him to Heaven."
"No!  I say BAD God, because I wanted Ty to STAY!  I wanted him to go to the HOSPITAL to get better, not HEAVEN!  AARGH!" 
I pulled him up on my lap and told him that heaven is better than the hospital and that he will get to see Ty in heaven some day.  He started to ask me about Heaven, and I never know what to say. 
"What's it like in Heaven?  Are there ladybugs?"
"I think so," I said.  "And rainbows, and lots of other children, and all the candy you could ever want.  I think heaven is really beautiful.  And FUN!"

He seemed okay with that.  My sweet boy just misses his brother.  I can certainly understand that.  Halloween will never be the same, but I vow to enjoy it with Gavin because Ty wouldn't want it any other way. 

2008


2009
 
2010

2011
 
2012


Friday, October 25, 2013

You know what I love?...

You know what I love?  I love that I see the world with my eyes open.  I love that I imagine, and truly believe, that every falling leaf is channeling Ty's free spirit as it softly dances in the wind.  I love that when a sunbeam lays across my face unexpectedly, I feel like it is a warm kiss from heaven.  I love that when the gentle wind blows, I turn to face it and accept my hugs.  I love that Ty gave Daddy a ladybug this morning, when he was already having a very bad day.  I love that Lou doesn't look at me like I'm crazy anymore,* because it is too magical not to believe. 

*just to clarify, Lou knows I'm all sorts of crazy, just not when it comes to Ty's ladybugs.

It goes without saying that I wish I was living my life with the blinders on, as long as Ty was with me, but I had no choice in that matter and I am at least grateful for how he has changed me.  He has changed a lot of people in so many ways. 

Today I spent a lot of time working on promotional materials for the Muddy Puddles Project 2014 - and I am so excited for what we hope to accomplish next year.  Thank God I have the foundation to keep me pushing forward.  I can't help but believe that we are going to continue this landslide of fundraising, enabling us to make a difference. 

Have you seen this video of Gabriella Miller?  Can she be any more lovable?  She was put on hospice care just days ago, after making this video for the Truth 365 awareness campaign (the clip below is actually her adorable outtakes).  I can't tell you how defeated I felt learning the news and then watching her incredible personality shine through knowing what I knew.  I have to keep telling myself that it isn't going to happen overnight, but it will happen.  It will get better for these kids.  I just get so angry knowing how many beautiful children will have to die before those changes come to fruition.

http://www.youtube.com/watch?v=QaoqnILa0l4&feature=youtu.be

Today Gavin asked me "when am I going to heaven," and "can I share my carrot muffin with Ty in heaven?" and "does Ty even eat in heaven?"  I love it when he talks about Ty.  So very much. 

I uploaded some recent pictures of Gavin, doing your typical Fall duties - like the quintessential trip to the local orchard for some apple picking, enjoying an episode of Franklin with the class pet (named Franklin), and of course, pretend slashing an Avengers punching bag with your wolverine claws while sporting a Rudolf nose.  He cracks me up :)  I thank God for him every day. 






Good night.  As always, thanks so much for your continued love and support. 

Sunday, October 20, 2013

Tats for Ty


This one year anniversary has sucked the life out of me today.  Lou and I have been going, going, going until today, and as usual the slowdown brought on severe sadness.  We have been talking about Ty nonstop today.  Moping around the house.  Wiping silent tears.  It always seems to hit us hardest when things are quiet (I guess that's why we so rarely quiet down in this busy, crazy, beautiful life).  I start cleaning and organizing and I come across so many of his things.  Like today, when I found his "guy" in a box of art supplies.  A silly little green alien that he once got as a prize after getting his blood work at the hospital.  He called the little green thing "my guy" and carried him around for weeks.  I am so fearful of the day when I clean out a closet or a toy chest and don't find his drawings, or stickers, or a toy he once loved.  Because those instances are becoming less and less one year later and that reality is simply depressing. 

The weather has been perfect and our great friends were in town from Virginia for the weekend.  We spent a lot of time outside with the kids, and I kept my eye out for ladybugs with no luck.  I didn't say anything, I don't like to expect a sign from Ty because I am so very scared of being let down.  Today, when the sadness really set in, Ty lifted me up with a ladybug once again.  This time I went out on my deck specifically to look for a sign.  I broke my own silly rule and I asked Ty to please send me a ladybug today.  The first thing I saw on the ground was a ladybug corpse :(  I thought to myself, "well, maybe he did send this ladybug but I just didn't see the poor thing in time?  And now she's dead, and so is he."  Great.  That certainly didn't make me feel better. 

Gavin was looking for me and called me back inside so I could get him something to drink.  I left the door open to the outside and after a few minutes I went to shut it.  My ladybug was right there on the screen door, and she was huge!  How amazing is Ty, right?  I called Gavin over and he was so excited, too!  We talked about how Ty was visiting, and how happy we were because we miss him so much.  We played with the ladybug, let her crawl all over, before letting her outside to disappear on her own.  Immediately after that, Gavin wanted to make a ladybug craft to hang on our refrigerator.  He is so sweet, he keeps me putting one foot in front of the other on days like this (and every day, really). 

On Thursday, Lou and I got our tattoos at Wooster Social Club in Manhattan.  The same place where NY Ink is taped.  We had a great artist, Eddie, and he was very understanding why these tattoos were so meaningful to Lou and I.  I never thought I would love having a tattoo, even when I decided to get one for Ty I wasn't sure whether or not I would like it.  Turns out, I love it.  LOVE it.  Every time it catches my eye I smile with satisfaction.  A forever reminder of my beautiful Ty, my gratitude to him and to God for having the chance to be his Mommy.  My gratitude for all the amazing people Ty brought into my life, too.  And my gratitude for how he changed me and made me a better person. 




Lou's tattoo is so cool.  He decided to put the number of days that Ty lived right above his collar bone, but he had it written out in a mirror image so that he can read it always.  After all, the tattoo is for him and for Ty above all, so it makes sense that he would be able to read it best.  My handsome husband looks even more handsome with his new ink :) 



looking in the mirror
 After spending the day in the city, we headed down to Long Beach.  The following day we had to meet with the artist to put some final touches on Ty's statue, so Gavin slept at Nana's while Lou and I spent the night in our old hometown.  It was late and dark by the time we got there, so of course the playground was closed.  We climbed the fence, regardless, because we needed to be with Ty.  We hugged his cold, bronze statue, kissed him on the lips, talked to him, brushed the sand off him, etc.  Thank you to whoever left the flowers with him.  There were two different arrangements, and it made me so happy to know he is being taken care of when we are not around. 

There's no where else we wanted to be other than that park.  I can't tell you how wonderful it is to have such a special place to go and "see him."  I truly feel like I'm visiting with Ty.  It doesn't make it hurt any less, but the experience is as bittersweet as it is beautiful every time.  Lou and I went out to dinner afterward, we drank too much, then we spent the wee hours of the night holding hands down by the ocean.  Surprisingly, we didn't cry while we were on the beach.  We smiled and looked out at the incredible ocean and thought "how can anyone question whether there is a God when we live with such beauty."  I look out on that horizon with nothing but confidence that Ty is out there.  Of course I have my dark moments, but I never doubt that I will see Ty again.  The hardest part is imagining how long I'll have to wait.  If I miss him this much after one year, how can I possibly wait decades upon decades?  It just seems too impossible to imagine. 

I received a message the other day that reminded me of the quote "the days are long but the years are short."  It is such an appropriate statement when relating to how our children grow so fast, but it is also such an incredibly relevant statement to this entire grieving process.  I can't help but nod in agreement with how very true it is. 

One year down.  One year closer to seeing my best good boy again.  XOXO.