Showing posts from January, 2013

Ty in the sky

Every single time I step outside at night, I look for Ty in the sky.  If there is a bright moon, or a twinkling star, especially when the North Star is shining bright (the brightest star in the sky and the one Ty "picked" to be his star), it's like I exchange a little secret love note with him.  A quick "I love you" straight from my heart to his.  Every single time.  Tonight I was driving home from my mom's house, which is almost a two hour drive north, and "Ty's star" was guiding me home the entire time. I hope that never ever goes away.  I hope there never comes a day where I am too preoccupied with my life that I forget to look for Ty in the sky.  Actually, I don't know why I am even worried that could possibly happen.  It's almost laughable.  For those of you with children... have you ever had a fleeting second where you weren't sure where your children were?  I used to get it when Ty and Gavin were small babies the most.  L

Any bereaved mother would agree

Do not judge the bereaved mother. She comes in many forms. She is breathing, but she is dying. She may look young, but inside she has become ancient. She smiles, but her heart sobs. She walks, she talks, she cooks, she cleans, she works.       She IS, but she IS NOT, all at once. She is here, but part of her is elsewhere for eternity.       I wrote so much over the past few days (I need to just write sometimes when I am so filled with mixed up emotions), but none of my scattered thoughts are ready for posting here tonight.  It is late, I am tired, I have been working all day long on various things for the foundation and I am simply spent.    The above was sent to me via Ty's Facebook and I read it nodding my head in affirmation to every word.   I am elsewhere for eternity.  I will never be myself again.  I smile, but my heart sobs.  I am here and I'm not here at all times.  All of this pain only shows me h

Somebody should do something about that...

I said, "Somebody should do something about that."  Then I realized, I am somebody. -- Lily Tomlin. That most perfect and appropriate quote was written on one of the entries in our wonderful gift from "Project Treasure".  Thanks again to all that participated.  I previously mentioned that Lou and I pull out one note almost every night and read it aloud.  That way, we can go to bed hearing someone else's love note to Ty and it always leaves us a little happier knowing how he has touched so many lives.  Another wonderful person shared her own personal loss of her son to cancer.  She reassured me that although our lives are forever changed, our hearts forever broken, still our memories are forever in our heart.  She is completely right.  I am just so scared that my memories will become fuzzy.  I want everything to remain vivid, so that when I call on a memory it can be as real as if Ty was in the room with me.  Missing Ty is constant.  It is on my mind whenever


I can't tell you how humbled I am by all of the amazing and heartfelt nominations.  Your support is what keeps me going, and tonight it has made me so happy during my saddest days.  Your words are so incredibly kind that I am embarrassed because I know that it is Ty alone who is wonderful, amazing and UNSTOPPABLE.  I am just a crazy lady who doesn't deserve such accolades, but I truly appreciate all of the wonderful things that you have written about me and my family.  Thank you just isn't sufficient.  I wish there was a way to say it better, but the best I can do is a large font, all caps, giant shout-out at the top of my lungs: THANK YOU SO MUCH!!! :) We all miss Mely.  Look how much they love each other.  Gavin has been doing really well though, thank God, and keeping Lou and I entertained.  He is such a good boy, and he has such a great energy.  Like any kid, he just LOVES to have fun, and he has been changing so much over the past few months.  He's growing u

Still choosing hope

I've stated many times before that the concept of false hope is an oxymoron.  I know that there are people who will read my words and think I'm fooling myself.   Just as I know there were people who expected Ty to die from the day they heard about his diagnosis.  But I don't believe in false hope.  Either you have hope or you don't.  And when you're in a desperate situation, why wouldn't you choose hope over despair?  So, through all of this, I've chosen hope and faith.  And I have no regrets. The idea of accepting the inevitable will never make it easier, either.  I always knew Ty dying was a possibility, but I think if I started trying to accept it earlier, it would have affected our incredible relationship while he was still here with me.  He was alive and right there in front of me, how would I be able to be the mom he needs me to be if I was busy learning to accept the idea that he might die soon.  Instead, I cheered him on every step of the way.  I d

Office improvements and missing Ty

I started writing this last night, but I had trouble uploading photos. In rereading it, it seems like my thoughts are scattered, but I'll go ahead and post it anyway. I woke up missing Ty so much today (and every day). I woke up and felt normal, went to the bathroom, and didn't realize he was gone until i returned to the bed. Those are the worst kinds of mornings. Anyway... I will start out with the good stuff.  Our new office space had wood flooring installed over the weekend (in the main room and the hallway), and tomorrow the carpeting will be installed in the two offices.  Freight Liquidators on Route 6 in Mahopac has graciously donated all of the supplies, and Greg Fagon of Avanti Custom Remodeling has again donated his time for installation.  Greg also led the painting project and I can't thank him enough for his incredible work.  He is a perfectionist, his work is beautiful, and he did it all in a day!  If you are looking for a contractor for any home improvem

Golden Globes should go gold

How can we get the Golden Globes to "go gold" for pediatric cancer?  aall of their marketing and event materials are already gold, who can I talk to?  They should change the gold envelopes so they untie a gold ribbon at the ceremonious reveal.  They can make an announcement at the beginning of the programming just to explain that gold is the color of pediatric cancer awareness (it can take less than 10 seconds), they can show an impactful 60 second video and they can encourage celebrities to wear gold accessories, gold shoes, gold dresses, etc.  It's a win-win! I vividly remember the first Academy Awards when all of the celebrities arrived wearing red ribbons on their lapels.  I will have to look it up, but I imagine that was the first ribbon used to draw awareness to an important health-related cause.  Pure Brilliance. Some time in the early 90's, there was barely a celebrity in sight who wasn't wearing a red ribbon at the award shows, and AIDS awareness finall

More about presents (or should I say, presence)

We all know Ty loved presents.  Who doesn't?  Even in my saddest state, when I open the mailbox to find a package I immediately feel at least some excitement.  Like the other day, I opened a gift of awesome new nail polish.  When do I ever treat myself to something like that?  Or the Stella and Dot earrings that were sent as a random act of kindness.  Absolutely made my day!!  And, made me so happy to think that people really do dedicate themselves to fulfilling random acts of kindness like that. Gavin and I were both touched by kindness yesterday, and what a bad day I was having.  I came home to tulips in my mailbox (thank you, Marilyn!!).  Later that night when I was taking out the garbage I found a completely anonymous and unmarked package.  Can you imagine Gavin's reaction when he saw this guy?  I can best describe it as a loud gasp of surprise mixed with pure joy.  We always told Ty he was just like Iron Man because of his built-in hardware :)  I'm so happy that Gavi

My best gift

A few weeks before Christmas, I was sobbing when I told Lou that I was at a loss for a gift.  Every year I try to have the boys make him something special.  Those are the best gifts.  It was so hard for me to buy him something this year because I didn't have anything new from Ty, and I never will again.  For his birthday I found a card in my closet that Ty had me buy during one of our Supermarket jaunts.  He just thought it was funny because when you opened it it "croaked" the happy birthday song.  I didn't buy it for anyone in particular, I bought it because Ty liked it.  When I came across it in November, it was the most special thing I could give to Lou on his birthday (of course, explaining why I had the card).  For Christmas, I ended up getting him a gift certificate for a tattoo because I know he wants to honor Ty with one.  He was surprised and he loved it. Then, I opened one of my gifts. This laminated picture arrived in the mail the day after I cried

Remembering the ride home

You know that the car is the place where I breakdown the most often.  When Ty was first diagnosed, it was a place I could go alone and scream my face off while driving around.  "LEAVE HIM ALONE!" I would yell, "WHY?" I would scream, "NO! NO! NO! NOT TY?!?!?" Over time, I got used to the fact that Ty had cancer.  As awful, painful, scary and unpredictable it all was, there was still a routine to it.  A very messed up, should never have to be this way routine that involved weekly and daily trips to the hospital, extended stays, emergency trips to urgent care, needle after needle after needle.  Procedure after procedure after procedure.  Setback after setback after setback.  But it was our life.  Our new normal.  Throughout all of this, the car transitioned from a place of solace for me to vent, to a place where Ty and I would spend some of our most treasured time together.  Just me and him and the open road.  I would often reach behind me and hold his war

We survived the holidays

Lou at the mountain this week :) Sorry it’s been a while since I posted an update.  We stayed at our friends’ house in Vermont through the end of the week and had very little internet connectivity.  It was nice.  We enjoy our time up there because everything just seems so quiet and simple. and the snow is just beautiful, but I was missing Ty so much (of course, I miss him always no matter what).  Gavin had a great time with his friends, though, and so did we. Light sabers and moustaches The last time we were in that house, Ty was scooting across the floor on his behind.  He loved to play with the magnets on the fridge and there were a couple of them that played music.  I remember watching him with a smile, but also feeling so sad because he was so different from the other boys.  He couldn’t run around and play.  The magnets he played with were baby toys and he was four.  Stuff like that used to make me worry about whether or not the treatment was going to cause learning and

Happy? New Year?

Is it possible to smother a three year old with too many hugs and kisses? I’m afraid I kiss Gavin too much.  I love him sleeping in between Lou and I every night and waking up to his sweet voice and strong hugs every morning, a habit we all happily adjusted to.  Poor kid has to overcompensate for my loss, so I’m afraid that sometimes I completely smother him.  I can’t help it!  I can’t hold onto him tight enough, hug him long enough or kiss him often enough.   When he is sleeping and I am up late, I check on him throughout the night to make sure he’s still breathing.   It’s like I’m a new mom again, nervous about having a tiny, fragile infant at home.  I’m always worried, and I honestly think that there is a possibility I will find Gavin still in his bed – not breathing – at any given moment.  I guess I am adjusting to a new normal where terrible things can happen at any time because I have already witnessed my greatest nightmare become a reality. New Year’s Eve means a whole year of