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 improvements whatsoever, don't hesitate to contact Greg at gfs00@aol.com.   Once everything is in place, I will post pictures of the entire office.  It is impressive!  Great things are happening here :)

I want to talk about Gavin, tonight.  And our sad little family of three.  It just feels so weird and so wrong all the time.  Everywhere we go.  Today he had his ski school (we signed him up at the tiny local mountain considering he did so well in Vermont).  We had a snow day  today so the place was busting at the seams with kids everywhere.  Brothers and sisters running around together, parents watching out for their brood.  I felt so mad that Ty wasn't there.  That I once had a five year old boy, too, but now he's gone.  He was beautiful.  Gavin loved his brother so much and now I have to wonder if he watches other little boys playing together and feel the same emptiness that Lou and I feel.  Of course his pain doesn't match ours, he is too young (thank God), but he does get sad.  I know he does.  Every single time he meets a new kid, he asks them to come over our house to play with him.  It is so incredibly cute but it hurts so much every time he does it. He needs the comfort that he only got from his big brother.  I worry that Gavin is lonely and outnumbered by me and Lou.  I always wanted a life where I was outnumbered by my kids!

I was wearing a heart-shaped locket with Ty's photo in it today.  Gavin was sitting face-to-face with me on my lap and we were just snuggling when he took my necklace and opened it.  He knows what's inside, he's seen it a hundred times, but my little actor opened his eyes wide in surprise and said "Ty!  I miss you!"  Then he did the cutest thing, ever.  He started whispering while he pulled the heart up to his chest... "Ty is in this heart, and now he is in my heart.  I put you in my heart, Ty."  I told Gavin that the words on my locket are very similar (I carry your heart with me - EE Cummings) and I asked Gavin if he would like to wear one, too.  He said yes with so much excitement, I almost started crying but I didn't.  I totally held it together.  I had already had a huge, ugly cry on my way into the office this morning so I was strong. 

I take Gavin to the office with me sometimes.  He raids Ty's candy cart and likes to touch every little thing.  I turned around for a minute yesterday and found him here, on top of the microwave, eating a lollipop.  I love when he comes with me.  I don't accomplish much, but I think it helps him to feel like he is a big part of all of this, and that is so important. 

I look at pictures of Gavin and wonder, where did my baby go?  It's so sad.  I was a cancer mom since he was 16 months old.  I lived in hell for over two years - still in it - and during that time my baby boy grew up.  Just another thing about my life that breaks my heart.  I promise you, I do enjoy him. to the fullest, now.  I never allow myself to go into a sad daze when we're together.  I play with him.  I still tickle him and kiss his belly all the time because he just can't get enough of it and  neither can I.  I love how he yells at me for mercy, begs me to stop, and as soon as I do he jumps up and yells, "tickle me AGAIN!"  Kids are the best.

I have a very embarrassing confession to make.  I often wait to eat a late dinner with Lou, so Gavin eats alone around 6PM.  When I want to do stuff around the kitchen, I prefer to sit him in his high chair in front of the TV so he can't walk away from his food (which he otherwise does constantly unless I'm monitoring him).  He is going to be four in April.  He weighs 46 pounds.  I know, it is utterly ridiculous.  Well, tonight was the last night.  I took the chair down to storage and snapped some bittersweet photos beforehand.  I decided it was time when even Gavin teased me about it tonight.  "Mommy, I'm not a little boy, I'm a big boy.  Why do you put me in this chair?"  The answer is, I was being lazy.  I can sit at the table with him for a half hour and watch him eat every night without getting too anxious, right?  Maybe if he didn't eat as slow as my 100 year old grandmother I wouldn't get so antsy but the dishes are calling!   I know, I know, I am going against every thing I write about.  Only with this one thing.  His slow eating habits really weigh me down because he makes us late for school every day, he doesn't finish his lunch in the time frame at school so he doesn't eat enough, and I can never get out the door.  Sometimes I carry a buttered roll in my purse to make up for the scrambled eggs he had to leave on his plate during the morning rush. 

I know, he's huge.

Last night, I snuggled Gavin and my pillow ended up soaked.  He doesn't snuggle the same as Ty and I realized it had been several days since I allowed myself to remember those details.  How I would put Ty's arms around my neck, then cup and scoop his behind so his whole body was up against mine.  Our noses would touch and I would share his breath.  He got sweaty sometimes so I would tissue off his cheeks.  He would fall asleep and sleep soundly right through my endless kisses on those perfect lips.  I could imagine how I would uncurl his fingers and hold his warm soft hand in mine.  I wish I never had to let go of that hand.  I would do anything for Ty.  Anything in the world.  When I pray at night, I can even hear his whisper just like he used to recite the Our Father, and say a special prayer for all the children with cancer.  He was so special, I can go on and on. 

When we were stuck in the hospital, inpatient, I used to fantasize about breaking Ty out of there.  Unhooking him from all machines, removing his tubies, running out the door and driving away into the sunny day ahead of us.  I wanted him to see the trees and smell the flowers instead of being stuck behind those cold white walls, curtains and beeping machines.  I promise you it's true when i say that now I fantasize about the opposite.  I drive familiar roads wishing I still had a reason to keep going straight for the hospital.  To see Mary, and Dr. Kevin and Dr. Jeff.  To talk about Ty and how we were going to save him.  Lou asked me last night if I think any of his doctors actually believed Ty was going to make it.  We both agreed that Dr. Kevin was the closest to believing.  He was always so amazed by Ty, and so supportive of our family.  He got really chocked up when he heard the news of his passing, and that, to me, shows what an incredible heart he has.  He cares so much and he is going to do amazing things for his kids, and I am so glad that he is on our medical advisory board at the foundation.

When Ty was a baby, everyone stopped to watch him.  He was just a gorgeous, funny little boy.  Lou and I were always so proud.  I loved how he would run ahead of me on the boardwalk in what he called the jogging lane - but he knew not to get in the bike lane.  I could watch his tiny feet and his athletic legs racing me in his flip flops while I strolled along with baby GaGa.  Such a beach bum.  I loved how he wanted to go down in the sand all the time on a brisk fall evening after work - which means late dinner and a definite bath, but I never denied him that because I love being on that beach just as much as he does.  People loved to watch him chase the waves at sundown.  Collect seashells and run across the waters edge to make the seagulls and the piping plovers go crazy.  Wet and sandy was part of his wardrobe at the end of almost every day.  I was sure Ty Campbell would be a great surfer and a handsome lifeguard.  Then I hoped he would grow up to be an executive or a senator.  Someone of influence.  Well, in his short five years he certainly has become a little man of influence and I couldn't be more proud. 

It's amazing to know that half of his life was spent as a cancer patient.  All that we went through.  He still managed to grow up from a toddler to a young boy.  He remained strong willed and knew what he liked.  He had a way with people when he wanted to, and other times he was just too cool for talking or hanging out.  Never too cool for hanging out with his mommy, though.  No way.  His favorite place to be.  Holding him close is the thing I miss the most.  Hands down.  Our love just radiated between us.  Who couldn't feel good with all of that love being exchanged.  Not to mention how perfectly his head fit resting on my chest.  His little bum on my hip.  We were a perfect fit in every way. 

This week I learned of two more children in the area that just died from cancer. I've been following their stories and begging for their full recoveries. It is so hard to stay positive when the reality is so brutal. One mom referred to her son's recent birthday as a celebration because he survived another year. How wrong it feels to sing happy birthday when you get chocked up on the goofy part at the end... "and many more!!"

I received a present in the mail today (love them) and it was a necklace that had a Moon charm inscribed "I love you to the moon and back."  It's funny because I never said that to Ty as he was growing up, only when he was a baby because  I read him the Guess How Much I Love You/Little Nutbrown Hair book every single night until he was old enough to stand and pick his own books.  When Ty was in his bed, asleep for several days before he passed away, I pulled together a pile of all of our favorites old and new, and I read "Guess How Much I love you" to him countless times.  I read it just the way I used to when he was in infant.  In my softest voice.  The night after he passed away and he was still in our bed, I continued to read him his books softly for hours and hours  They say the hearing is the last thing to go.  I wanted him to know that i was reading to him. Guess How Much I Love You.  The Little Boat.  We're Going on a Bear Hunt, The Little Mouse, the Red Ripe Strawberry and the Big Hungry Bear, I Love you Forever... all of those books have so much more meaning now.  It was as if I was trying to prepare him and inspire him for the life ahead of him in heaven.  I wanted him to be inspired when I read "full speed ahead to the end of the world!!"  I hope he heard me.  I hope those hours of storytime filled him with comfort.  I know it helped me.  I was so helpless, I couldn't do anything, so I read to him, and I kissed his cold cheeks, and I held his hand and I whispered I love you a billion times over.  Oh my God, I can't even type through my tears thinking about that.  I want more time.  More stories.  I miss him so so very much.

I was all over the place in this post.  Hope that doesn't mean I'll be having one of those days!  Up and down.  Laughing then crying.  Yep, probably going to be one of those days.  I'll skip the mascara :)

I posted a similar picture to this one the other day.  I love the sunlight in his hair.  Almost angelic.