The tooth fairy

Charly lost her 4th tooth today and has been filled with fantasies about the tooth fairy coming ALL DAY LONG. We all went out to western mass and took a fabulous hike at the notch. There we were, enjoying the great outdoors with fall in all it's dying glory... the family, the puppy and the tooth fairy fantasies. When we got home, the girls fell right to sleep, and by that I mean only two yells up the stairs for Maddy to get into bed, with no actual visits from us to enforce the rule. I wrote little love letters on two one dollar bills from the tooth fairy to Charly and slipped them under her pillow. I'm filled with excitement for her morning discovery, her dreams and fantasies are going to come true, I can guarantee it at least this time in her life:)

Spock

When my hair started growing back and I had even the most scraggly strands to call my own, I was so happy..that was until my husband told me I looked like a baby duck. Well folks, it hasn't grown in length that much, but it is filling in nicely, so once again, I found myself vainly excited about my new hair until Ted told me I look just like Spock. Ahh, to be married almost 10 years and share that level of honesty. Oh well, he's the one who has to kiss Leonard Nimoy, not me:)

oh yeah, I have a job

So here I am, Merrily going about my awareness campaign when the fact that I need to get focused back on my real job came to me as a power point slide print out left on my desk from a lab at Harvard that is doing very similar work to me and is about to publish. Apparently the world of science doesn't really care that I was stalled for a bit due to unforeseen circumstances. No problem I think, but I just spent the last 2 hours on 1.5 paragraphs. All I can say is thank god I made figures before my body made tumors. I'll blog more once I have this monkey off my back. Oh yeah, my dog WILL NOT stop peeing on the only carpet we have left in the house, we've lost all the other carpets to urine attrition already. That puppy is very lucky she's cute and melts my heart.

big birthday little girl

We were busy, we were burnt out, we were working too hard on to many things and decided to ease our way past Maddy's 3rd birthday with a quick trip to chuckee cheezits, a little left over birthday cake and the presents that the grandparents sent up. The only problem with this plan was that I couldn't let her turn 3 or any other age without an actual celebration. She's alive, she was born, so the world should celebrate! I probably would have let it slide if it wasn't for the suggestion from my friend Suzzett that her son's dance troop come for entertainment. I've never been to a party were there was actual talent for entertainment, so I jumped at the opportunity. They were amazing, and I was pretty f'cking happy to see these kids so talented making all of us smile in such a unique way. I think Maddy was pretty happy with it too, at one point she started complaining because I was shielding her with my picture taking arm from being able to see the show. Charly is convinced that she'll be part of the troop in a couple years..we'll see little girl, keep dancing and maybe:)
It was a big party with lots of good friends, lots of good people who are all in my babies world. I'm so grateful for every single one of them, for the effort that people are going through to make sure a little girl smiles..Maddy too:)
I also need to state to the world that Sapna makes the best food in the world. So there it is world, challenge is there, can YOU do better?

Charly and the fire house

It was Charly's very first field trip ever in "real" school. A trip to the firehouse replete with a visit from Puddles the dog. I had been hearing about the fire house rules, and in particular, how we're NOT to pull Puddle's tail for a couple of days now as Charly became more and more excited about this trip. One of the reasons for her enthusiasm was that mommy got to go as a chaperon. Yesterday, I went to fill out a CORI form so the state, which allows me to drop off and pick up my child from the school, which allowed me to go into the school for orientation, which certainly accepts my checks for any school related activity, could ensure that I am NOT a level 3 sex offender. I was told to do this prior to the field trip, so in I went, the day before having no idea that it took 8 days for the state to sanction me a non-perv. I was told that I couldn't go on the trip. The Secretary and admin sat there telling the skinny bald woman who was in tears that she couldn't go. I was devastated. I knew how important this was to my little girl, almost as important as it was to me. These ARE the milestones, these are the memories I so want to have in my children's heart. Such a small thing to most, a trip to the fire house represents the entire reason for my being right now and I couldn't go.
5 Minutes after I left the office yesterday, Charly's principal called me on my cell phone. Apparently the superintendent overheard the conversation I had with his underlings and thought it was ridiculous to not allow me to participate, so he squared it away. Good people:)
This morning, I donned my wig, put on a light jacket, proudly held Charly's hand and went about the morning like any other "normal" mommy. I will remember ever single glance over the shoulder that Charly sent to me, every one of them said, thank you mommy, every one of them said , I love you.

a warm hand, a crackling fire and some poopy

Tonight, we pulled the futon out in front of the fireplace. Ted's laying next to me as I finish up some work on the computer, his hand is gentley rubbing my back as his mind grazes over the Plains history book de jour. Then there's that fire, it cracks, pops and breaths. It consumes the air and leaves as warm gifts these delightful sounds in which the simple act of enjoyment must be wired into our DNA. Just as I let myself wander into my most fanciful fire induced memories, Maddy comes pitter pattering down the stairs eager to go poopy on the potty. And poopy she went. Now off to sleep with her, and back to the fire I go. Night night.

smiles from a new old friend

I have eluded in the past about the nature of the relationships that I've been lucky enough to be part of recently...another silver lining. We all want the pain to go away, the hope to grow, the tumors to shrink. I'm compelled to try and help each of these families on whatever level I can, to ease their burdon, to offer them a glimpse of hope, to let them know that as long as I can say the words FU angiosarcoma, I will fight for them. Sometimes I break a little and find pieces of myself scattered all over the place. I'll collect up all the shards but might be missing the tiniest shred that ties me back up into a solid woman, impenetrable. Inevitably it'll be lost in some projection of what one of my many friends are suffering through right now. How could I possibly reach into their pain and retrieve it back? Sometimes, though, when I least expect it, I'll see a smile on the face of a new old friend, or get an email that is just dripping in hope. These moments make me realize that humpty never needed his original pieces, just some duck tape and patch work from a group of people all working toward the same goal.