Today sucked.  Wow, I mean it really sucked.  My in-laws, who spent the later part of the day with us, saved us on this terrible day and we are so glad they came to feed us and keep us company.  But there wasn't anything that could really fix today. I just wasn't ready for this.  I don't know why I didn't think it would be so hard?  I guess because we survived Christmas I thought nothing else could be that bad, but... oh yeah... a holiday where a bunny comes to deliver oodles of candy - Ty's favorite thing in the whole entire world - was not at all easy.  It was such a long, painful day, it feels like I've been awake for two days straight.  Trying to make pretend things are okay on Easter, when everything in our world is not okay was simply painful and exhausting.  It started with the minute we all got out of bed.  Yay, the Easter Bunny came!  But there was nothing exciting about it for me and L...

Poor Gavin got so sick last night.  We went out to dinner, I was wearing a new dress (which is a big deal, it has been a long time since I made an effort like that to have a nice night out with family).  I don’t know if it was something he ate, or just a parasite of some sort since he can’t stop himself from sitting on the floor everywhere and touching everything, but Gavin ended up with a terrible stomach ache by the end of the night.  While he was on the potty, he also vomited all over me and the new dress.  Sigh.  Story of my life.  Wish I was exaggerating.  As I laid down in bed with him, face to face, I became overwhelmed by the sickness in his breath and I couldn’t stop the tears.  It is a smell that I miss from those same nights with Ty, which were obviously much more frequent for so many reasons.  Of course I used to love it more when my Ty went to bed smelling like milk and honey, but I swear I didn’t mind the smell of his breath af...

It’s true.  They are totally fat.  I just came to that realization.  I know it sounds ridiculous and vain, but the significance of my fat arms, what it all represents, is what brings me to talk about it here.  I was feeling warm in my sweater today, and when I took it off to cool down in my tee shirt, I noticed how incredibly soft and chubby my arms have gotten.  I can’t even explain how sad that makes me on so many levels.  It’s natural for most people to feel disappointed when their pants feel too tight, or when they’ve gained weight, but for me it is more than that.  It makes me sad because I haven’t taken care of myself by eating well or exercising in months on top of months.  Yesterday I worked so late at the foundation, dinner was from Ty’s candy cart!  But the much more significant reason why my fat arms are beyond depressing is because they were never this fat in the five years that I was lucky enough to carry Ty on my hip.  Not...

I swear I have had some good days (all things considered), but the past two days have been very, very heavy.  The opposite of good.  I have been so slow and my eyelids feel like they are kept open with toothpicks.  I haven't worn any makeup for days.  I look old and run-down.  That's because that is exactly how I feel.  Sad, lonely and ugly, to be honest.  Lou has been in the same funk, too.  We are just missing his blue lollipops and his soft, sweet laughter.    It was a miserable day in general because of all the snow.  I had a chill to the bone all afternoon.  I did accomplish getting Gavin a haircut at Aunt Lizzie's house, but the temper tantrum that ensued when it was time to leave was almost unbearable.  Thankfully, I managed to hold it in all day until Lou took Gavin upstairs for bed.  I started making our turkey sandwiches for lunch tomorrow (one for Gavin and one for me) and suddenly buc...

Over the course of the years since my son, Ty, was diagnosed with cancer, I reluctantly became a cancer mom.   AKA: Momcologist.   It is not a group that I wanted anything to do with.   In the beginning, I denied myself from developing a relationship with another cancer mom because I simply couldn’t take on her fears in addition to mine.   And I didn’t want to believe that her child’s potentially poor prognosis might be the same as mine.   I didn’t want to know.   My first day in clinic on the 9 th floor at Memorial Sloan Kettering was spent people watching.   It was October 2010 and I stared at all the babies in strollers with puke buckets underneath.   Kids walking on crutches because they had a limb amputated, dragging with them IV poles that filled their bodies with poison.   And moms, dads and grandparents that wore supportive tee-shirts like “Team Cory,” “Prayers for Ashley” “Warrior Jake” and “Super Nate.”   I will never do ...

Look at this BIG BOY!  Three and 10 months.  Looks like he's six! I haven't seen a real live ladybug for two months.  We had a big snow day on Friday so I had three very long, uneventful days at home with Gavin and of course, I thought of Ty every second.  Yesterday, I finally asked him to send me a ladybug.  I try not to do that because I don't ever want to be disappointed, but I had to.  I was crying.  I told him that I need to know he is okay.  Please.  Send me a ladybug today.  I looked up on all the walls and ceilings wherever I went.  I started to doubt whether or not they ever really meant anything.  I put Gavin to bed and settled down to watch a heartwarming movie.  The movie, "The Intouchables" was in French (subtitles) and since Lou wasn't home I knew it was going to be my only chance to watch it.  I opened a bottle of wine, snuggled up in Ty's spot on the couch, and watched a beautiful movie about a we...

“I don’t read your blog, it’s too sad.” This is a statement I have heard countless times from friends and acquaintances.  I have also had some people tell me that when they share Ty’s story, they sometimes get a similar response.  Or they are questioned why they would care so much about these kids with cancer, "Isn't it too depressing?"  Yes, kids with cancer is very, very sad and very, very unfair.  But it exists, it is a horrific problem, and nobody wants to talk about it because it's too depressing?  I don't get it.  Every child is at risk.  We can't keep turning a blind eye. I understand that it is very sad, and I certainly don't expect people to hang on my every word, but it used to bother me if someone proceeded to ask me how Ty was doing following a statement like that.  I began writing about Ty’s life with cancer because it was too painful for me to talk about it.  To explain medical details over and over and over again. ...

What a wonderful network of support this blog has blessed me with.  Thank you so much for the wonderful comments, emails, messages and gifts I received over the past few days.  So many people have reached out to offer me comfort and to tell me that what I’m feeling is okay.  I can’t change what happened, and my regrets will never go away, but I do agree and believe you all that Ty knows how much I love him, that he could hear me when he was asleep right into his final hours. I even believe he was listening as I read him book after book after book throughout the entire night after he passed away and lie cold in my bed.  I felt calm, as if he was still in that room with me, and I couldn’t think of any other way to let him know that it was time for peace so I read to him.  The coroner wasn’t coming until morning, so Lou and I had one last night with him resting between us.  I remember feeling so scared knowing that it was the last time.  I thought I woul...

Tonight I am lost.  I feel foolish.  I am sad for a baby boy that is on hospice care after fighting AT/RT for almost a year.  Sad isn't the right word.  It is so much deeper than that.  It brings back a flood of memories from when Ty was in the same situation.  His inability to sit up.  His inability to swallow.  How he eventually stopped tolerating food or water.  His "smile of the day" despite it all.  I saw a post on a private facebook page that I am a member of.  It is a site for parents of children with AT/RT (the same tumor type that Ty suffered with).  I remain active there because I feel that I have a lot of knowledge that some of the other parents going through this might benefit.  That being said, it is very hard to watch the posts and listen to the conversations among all of these families struggling with treatment.  I recently saw a post from a mom that described symptoms I wa...