Wednesday, May 28, 2014

Everything is bigger in Texas...

... including their hearts!  Back in December 2010, I received a gift in the mail from a stranger in Texas – a Superman Christmas ornament – and it marked the beginning of a great friendship that I will cherish forever.  Kathleen always knows what to say, she never hesitates to reach out to me, and she sends the all-time funniest cards and the most thoughtful gifts I have ever received.  I truly believe she is one of my many gifts from Ty. I am so grateful for her, and so proud that she is an integral part of the TLC Foundation, heading up our Dallas Chapter (you didn't know we had one, did you?).  Last week while we were setting up for her fundraiser, Ty sent a ladybug to show us he was there and he was proud.

Childhood cancer is not contagious if you support the cause.  Getting involved won’t ruin your day or make you sad all the time.  It will empower you!  It will make you feel like you are driving change!!  Kathleen and her husband Rocky understand this.  They look at their three healthy boys with gratitude, and they aren’t afraid to embrace the cause. This year Kathleen recruited an incredible team of friends to host her second annual “Rock for Research” event at Rockhouse Studios, and it was a huge success.  We are so grateful to all of the wonderful people who came out to eat, drink and dance while celebrating progress, honoring Ty, and supporting all children currently battling cancer (and those who will be diagnosed in the future).   

Everyone was so warm and loving, and so passionate about the cause.  It was an incredible night with incredible people.  The auction was a huge success and the music was terrific.  The “Rock for Research” event breathed some new life into me and Lou after a tough couple of months.  It was an amazing little getaway where we were surrounded by wonderful, loving people and where we knew we were raising money to help our mission.  We danced, we drank, we laughed and we felt surrounded by love. 

The TLC Texas Team - we love you!
These days life is just a balance of ups and downs.  I guess it always has been, but since losing Ty and being so intimately familiar with pain and sadness, I feel the “downs” that much more intensely, and consequently the ups are that much more liberating.

I was so tired today.  It was one of those days where I started thinking about bedtime around 3PM and planned on getting to bed as early as possible.  I made a big dinner and packed lunches for tomorrow even though I didn't want to do any of it.  I folded laundry until almost 11 and even though I’ve wanted to write for days upon days, I certainly didn't have the energy tonight.  Not until I walked down the dark hall, last one still awake in this big quiet house, and upon entering my room I felt for one split second that Ty would be there in the bed.  For one sweet second, I forgot he was gone.

I used to always be the last one to bed when Ty was sick.  Lou would bring him to bed and I would enjoy the quiet time on my computer until the late hours of the night when I just couldn’t keep my eyes open anymore.  I guess it felt so similar walking down the hallway tonight that I forgot he was gone for just one tiny fraction of a second; and when I remembered I climbed into bed and could not stop the tears and the sobbing.  I couldn't control it and didn’t want to wake up Lou, so here I am.  Back downstairs, looking at a blurry screen because I still want so badly for it to be true.  A familiar burn in my eyes, and as much as it hurts I don’t ever want it to go away because that would mean more distance between me and my Ty. 

Spring has been painful in the childhood cancer community.  So, so many children I have grown to know and love on social media have died over the past few weeks.  I guess that’s why I have been so quiet on the blog.  What can I say that I haven’t already said?  We are trying so desperately to drive change for these children, but sometimes it feels like we are beating a dead horse!  It’s painful, it’s horrific – but I know it is not hopeless no matter how long this continues.  I simply have to believe that someday we will find new, safer and more effective ways to cure cancer – especially among its youngest, most innocent victims.  After all:
  • 1 in 2 men   
  • 1 in 3 women  
  • 1 in 300 children  

WILL GET CANCER!  1 in 4 people will die of cancer.  How can we ever give up?

Spring has finally sprung here in New York.  I recently watched Gavin blow dandelion wishes and passionately yell “I wish my bru-ver never died!”   My eyes fill with tears as I silently wish for the same.  Watching the hummingbirds out my window and the butterflies in my garden bring me bittersweet happiness.  Life goes on, and it is beautiful, but I will never stop bleeding over his loss. In the wake of my sadness, this guy makes me smile every day.  He is getting so big and he is a constant reminder of how lucky I am. 

There have been incredible breakthroughs in childhood cancer, and of course I am grateful for the progress that has been made – but it is not enough, not even close.  While researchers have made tremendous strides against pediatric acute lymphoblastic leukemia (ALL), raising survival rates from just 4 percent 50 years ago to 94 percent today (thank God!), the deadliest childhood cancers continue to destroy our children and little to no progress has been made over the same 50 years.  Yet, the incidence of these cancers – Brain tumors, Neuroblastoma and Sarcomas – has increased by 29% and continues to affect more and more children as the clock ticks on.    

The keyboard helped me let out some frustration tonight and my sadness has dissipated.  I guess I needed that.  I am ready to go back upstairs, lie in my bed curled up facing the place where Ty should be, and wait for Gavin to join us as he always does.  There are so many exciting things in the works at the Foundation, I just know Ty would be so proud.  And that brings me peace tonight.  Thank you for your continued love and support.  I still believe in miracles.  I hope you do, too.  


Sunday, May 11, 2014

"Happy Mother's Day" will never sound right as long as he's not here

The weather in New York has been beautiful this weekend.  Lou and his Dad spent a lot of time outside yesterday getting our yard ready for the summer, and I decided I wanted to BBQ for dinner.  I stopped into the supermarket while Gavin was at Karate practice and I walked the aisles remembering Ty and how much he loved going to the supermarket.  I took a quick spin down the candy aisle just for him, and I felt very, very heavy with sadness and longing.  My trip to the supermarket left me feeling very mopey for the rest of the day knowing Mother's Day was just hours away.

At checkout I was taken by surprise when the woman said "Happy Mother's Day," as I was leaving.  "Thanks, you too," I replied, but I couldn't help but think it was an odd assumption.  I was alone, I wasn't buying anything that indicated I have children at home, and I was carrying the weight of my loss on the surface of my skin, making Mother's Day a difficult day to say the least.

There are so many women like me who have lost children, or those who lost their mother; there are women who may desperately wish for motherhood but have yet to be granted such a gift, and others who have respectfully opted out of motherhood.  Although the intentions are nothing but kind, "Happy Mother's Day" wishes can be hurtful.  Those words are delivered with an invisible sting in the tail.  I recognize only the best wishes behind the statement, and while I have every intention to take time to myself today and to enjoy Lou and Gavin on this beautiful day, it is impossible for me to have a truly "Happy" Mother's Day.  I will have a content Mother's Day.  I will enjoy my family; I will remember I am blessed to have my incredible Mom; I will stare at Gavin a little too much because I love him so; and I will survive this day with a broken smile on my face.

I spent a lot of time going back to May 2011, May 2012, May 2013 to read about my previous Mother's Day experiences.  God, we have been through so much.  Ty, especially, had such a difficult life in the short time he was here.  I also looked back at all of the pictures, which has a magical way of bringing me right back to that place where Ty once was.  I swear, his beautiful face can bring tears to the eyes of any stranger! He was just too good to stay.

This was the last photo I took of us together while he was awake.  He let me take him for a walk around the house and outside in our yard.  I recited "We're going on a Bear Hunt" from one of his favorite books, and we took a break to sit on the wooden bench in front of our house.  I remember every minute of that walk, specifically how his beautiful green eyes looked in the sunlight, and where he had one tiny brown speck in the green of his left eye.  I recently planted some Spring flowers in the planters next to that bench.  I needed to add some color and some happiness to that space after the snow finally melted so I filled them with yellow and purple pansies.  When I was finished, I sat on the bench to talk to Ty and get lost in my memories of him. I was suddenly compelled to document our time together on that bench and started instinctively carving the words "Ty was here" right into the wood using a garden clipper.  My tears were falling onto the wood as I carved, and I was very satisfied with my work after I finished.  Anyone who stops to sit on that bench will know that Ty was here and he was important.

My first Mother's Day was such an incredible honor.  I held my baby boy in my arms, and I finally understood what motherhood meant.  It is so much more than I ever could have possibly imagined, and I was so happy to celebrate the day!  Lou surprised me with this most adorable framed photo of Ty, that adorned my desk at work ever since.  He has always been so thoughtful.  Best husband ever.  Cutest baby ever, too.

Even cuter was his first attempt at taking the picture.  In true baby fashion, Ty ate the sign.

There's something about writing that immediately helps clear my mind.  I guess I don't write as often because I don't need it as much as I used to, which is a good thing, but on days like this it remains such a release for me.  I feel better already and am inspired to get off the couch, take a shower, and enjoy this beautiful day outside with Lou and Gavin.  No more moping, I am going to try and make this Mother's Day a semi-happy one.  Thank you all for caring so much, and for continuing to support our family..  XOXO.