In the Nick of Time

I can usually keep it together pretty well. I am surrounded by pain and suffering and death everyday of my life, and the span of emotions that I encounter stretch my heart until it's almost flat. I've never lost my sense of humor, I cry when I want, I laugh when I want, but I'm usually in control of myself. But then Jen came in to our lives followed by Nick and ever since, my perspective on life has needed some readjustments. I've had to make room for emotions that are only on the good side of the spectrum, and as great as that sounds, it's not easy! What's so hard you might ask? Not turning into a fumbling little cry baby every time Nick lights up with a smile that starts inside of one ear and cuts right across to the other one. Seriously, his entire face is replaced by pure happiness. I also find it hard to reign in the tears when his mom starts screaming with glee as she sees them nearing the finish line. Every time she sees her son filled with so much joy, she feels it twice as deeply as he does, so you can paint the image of how big her smile is all by yourself with no help from me. Another stumbling point is watching my little girls fall in love with this experience. They get it, and I love them for that. My airborne army ranger gets misty eyed when he talks about running with Nick. Me, choking back the tears throughout it all. The span of emotions is so off kilter relative to the rest of my life, it's so infinitesimally small and condensed that it rips the tethers right off the moorings that have been steadfast in quartering me for the past three years. So there it is, possibly the hardest thing I've faced yet, happiness. I guess there's really no shame if I fail and give in to the tears, just make sure you carry some industrial strength tissues if you ever come watch them race with us!

Tory, little Warrior with the big giant heart

Tory Ward! At raft 4 Life!! I felt like a little girl about to meet a pen pal that I'd had for years when I found out I was going to meet her in person. For months she's been updating us with the trials (literally) and tribulations of battling stage IV angiosarcoma.
Tory came to the river to leave all of that behind, she came to be with friends, to paddle through the rapids, to let the thrill of adventure wash away everything that doesn't belong in the life of a 28 year old woman. If you looked at the pictures of the waves crashing over her, you'd be hard pressed not to smile, regardless of knowing who she was or what she was going through. If you looked at them with eyes that have watched too many people struggle with this disease, you'd be hard pressed not to let your chin fall right to the ground in disbelief that someone could be so strong in the face of adversity. Aside from being totally impressed that she could and would take that river on from the front of the boat, I was also caught up in the fact that she has never let cancer rob her of the ability to smile.
We had a long heartfelt talk after the trip. We laughed and cried about life with angiosarcoma. We hugged and walked away from each other with warm hearts and red eyes.
Tory had a serious setback yesterday and is in a medically induced coma fighting for her life. I can't seem to replace the memories I just made, so fresh, of her smiling, with the stark reality of her current situation. So I won't. I'll have to be strong now and smile while thinking of Tory, the little warrior with the big giant heart.

Going over the hill with a big fat smile on my face

In two hours and thirty nine minutes, I will be forty years old. I WILL BE OLD OLD OLD. I will be bonafide old with grey hair(s), wrinkles, and failing eyes. I will be so old that kids will call me Mrs. blabla automatically...out of respect. I will tell tales of my rascally youth that now happened many decades ago. I will use idioms at inappropriate times because I won't be able to keep up with the kids these days. I think I'm supposed to start wearing my pants above my belly button, so I'll go shopping for mom jeans. This is by far the most excited I've been for any birthday in my entire life. I'm giddy as a little school girl just thinking about how old I get to be!

Surprise Charly!

She doesn't know it, but I just booked Charly's first real adventure in this world. For the past couple of years I have been going to Coloma California for a white water rafting fundraiser that my friend puts on to fuel all the good research. I'm going to wait until the day before we leave to tell her. When she's heard me talking about it in past years, she would drop not so subtle hints like, "mommy, why can't IIIIIIIIII go?", or, "it sounds like so much fun, maybe one of these trips you could take me? maybe? mommmy?". Little does she know that in one short month, she'll be dining on peanuts while snuggled up in my traditional cross country tigger and pooh fleecy airplane blanket.
I can NOT wait to introduce her to the river and to show her how awesome my California friends are. More than anything, I can't wait to show that little girl how to have fun.

Steve Cunetta

Where ever there is wit, there is Steve Cunetta. Where ever there is an honest smile, Steve is there. Although I wish there were more time to pour into the details of each others lives, I'm so grateful that our paths crossed, or more appropriately, ran in parallel for a brief period of time. Steve is my inspiration and I'd be hard pressed to find another human who could match the amount of respect that he garnered in this world. He held it together with grace and dignity. He saw this mess as a unique opportunity, a chance to deliver the greatest lesson that one could offer in life... how to die well. Steve promised to send me signs of the after life in the most ridiculous fashion amenable to whatever other worldly form he takes. So I guess I'll wait, hopefully for a long time, with a sense of impending silliness for Steve to make true on his final promise to me.

Say goodbye to being little

Maddy's car seat was sitting by itself on a chair in the rain when I picked her up today. Oops. Luckily, my daycare provider (the best in the world by the way) offered up every device made by man to strap a kid down inside a car. We settled on a slightly used backless blue booster seat. Maddy, who is already one of the most animated humans that I've ever met, became overwhelmed with joy. True unabashed joy. Looking at her in the rear view mirror, I saw a little girl where a tiny girl used to sit. I decided it was time let go of her car seat, so we popped off the highway and bought a booster seat of her very own. In the 5 &7/12ths years that she's been on this earth, she has never exhibited the level of happiness that came pouring out of her on the rest of the drive home. "Look mommy, I can put my cup here! And I can sleep with my head in the head rester! AND I can reach Charly's jacket!! ANDDDD I can touch you!! Mommmy, I can touch you with two fingers now!!!" she squeaked while trying to lunge forward in order to explore all the new possibilities that her new thrown granted. Maybe it was because she's yearned for the booster seat freedom that Charly has possessed for years now that she exhibited such overwhelming gratitude, or maybe it was because she came upon the realization that she is saying goodbye to being little. Regardless of her motivations, perhaps I shouldn't try so hard to figure out why she was so exuberant, but rather focus on holding on to the smiles that she planted on everyones face who has come in contact with her since the buying of the seat. Hopefully she'll be this excited when she says goodbye to the booster seat, I'll be sure to let you know in about ten years....

Thankthank you

Today we had people from Maine, Maryland, Minnesota, New York, and Connecticut come to Massachusetts in order to participate in the third annual Angiosarcoma Awareness 5k. True humanitarians, every last one of them. These people have shown me the best that life has offered up so far. I have said thank you so many times that I fear I'm running into gratitude inflation. So I'll take the lead of any good governing body, and I'll just make more. Instead of thank you, I will now thankthank you all so very much. Really, thankthank you from the bottom of my heart.
In addition to our 5k, Ryan Humphrey put together a sister 5k in Troy Michigan in just one months time. As impressive as that might sound, he did it while recovering from a complete resection of his left lung and while undergoing chemo. I can not overstate how impressed we ALL are by his herculean efforts which culminated in close to 400 people crossing the finish line. Of all the stories I've come across, and there have been many, this one impresses me the most. Hats off to Ryan and everyone who helped him put this together. Thankthanthank you Ryan!