Thursday, November 21, 2013

The Gift of Grace

Gracie. Gray-bo. Gray. Baby G. Grace-a. Gracie-Grace. Gracellina. Gracer (that's Grandma's). Gracie Girl (GG). Grace Robin. GRD (pronounced GERD). Graceland. Grace Face. Jacie (that's hers).

"Jacie's! Jacie's juice! Jacie's bear! Jacie's mommy!"


Sweet baby girl, Grace. Feisty, sassy, smart, twirly whirly, Curious George loving, binky obsessed, Gracie.

"GEORGE!" She sits on the couch and screams at the blank television screen, willing him to appear. When he doesn't, she yells it louder and tries harder with her tiny mouth to pronounce the word correctly; perhaps mommy didn't understand the first five times she said it. "GEORGE... Mummy, mummy? GEORGE!"

She was so tiny, so wobbly-footed, just... ah, was that just a year ago? With her first taste of cake, it seems, a new burst of Grace Face.

Pre first cake ever: "Hey, what's this 'chocolate' business all about?"

Post first cake ever (her bfriend Matthew is clearly thinking,
"I'm intrigued and bewildered and certainly a little embarrassed for her... but I still love this girl!")

She'll attack you with her love, hugging you to the floor, kissing you with wide open mouthed tonguey (yes I said that) kisses that go on far too long (and that). You hold her and she squeezes you  tightly. You kiss her, she stares straight into your eyes and kisses right back.

When I hold her, I inhale her.

(I think Daddy would have to agree.)

(and Uncle Scott)

(And Grandpa)

(And Grandpa)

(And Noah)

All those boys. Wait, but where's a picture of Uncle Paul loving Grace? Huh...

Oh, here's one of Paul sitting next to me when I was outrageously pregnant with Gracie. Pretty much the same level of adorable and at least as touching as the above photos.

She's developed a very efficient language of many two word phrases that more than gets her by each day.

"Next chu" = I want my little body to be sitting on the chair next to you or right up on your lap. Now, please.
"Up high" = I know I need to try and resist grabbing for my binkie to the best of my abilities, so in order for me to successfully do this, please put my binkie up high so that I cannot see it and therefore stop craving it.
"No sleep!" = I see you, mommy and/or daddy, resting your head on the back of that chair. I see your eyes half closed after a long day. I'm here to tell you that you will NOT be resting as long as I am anywhere near you.
"Hold You" = Hold me
"Hug You" = Hug me
"Help You" = (You get the idea)
"Right back" = Usually said 30 times an evening as she slips out of the very adult chair she "sits in" at the dinner table, as she refuses to use a high chair ever again.
"Two books" = I'm just going to get it out there right now, before we start reading, you are not going to get away with reading only one book. There will be multiple books read to me at this time.
"Little more" = I loved that cake and would really appreciate a second helping.
"Noah Noah" = I need my brother. Where is he?

She is fiercely attached to Noah. We arrive to pick him up at school and she screams into his classroom, "Hi Noah! Hiiiii Noooooah!" She sees his lunchbox sitting off to the side out of his reach and yells "Noah BACKPACK!" in fear that he may miss it and leave it behind.

Sometimes, she gets so excited about a thought that she talks more quickly than she can find words and instead her lips just move really fast with the sounds of the words trailing several beats behind.

She can sit sweetly with a brush and (try to) gently brush my hair, but then hurl herself off the couch, screaming with joy, following up with a somersault (surface does not matter; kitchen floor seems to work). She'll sit silently in her car seat on a drive, quietly sucking her binkie, but you better not stop at a red light because she will immediately demand, "Go! Go! Go!" She looks a bit younger than she is, I've been told, her face the same baby face as she has always had, cheeks a bit smaller, hair only one soft layer. And yet she believes herself to be far older. Ask her how old she is now and she comes up with the same answer each time... "Four".

She stores binkies in secret places, it seems; you remove one and another appears as if out of thin air.

She loves baby dolls and truck books, shopping with her *own* grocery cart, everything about shoes (she will bring each of us our shoes when leaving the house), coloring (on paper, walls, important bills), doggies (from a distance, unless they're stuffed). She loves books, especially when she's sitting "next chu" and you are both "cozy" (she says that, I love it).

She gets mistaken for a boy (because of her hair), but oh, she is my little girl.
wearing one of my own baby dresses

Her eyes don't rest until she is sleeping (and even then, the slightest noise snaps them open), and they explore the world, measuring its meaning in her mind.

Am I being obnoxious yet? Probably adding another video is too much.

November 19th, Full Moon. She's two.

She really doesn't understand what a birthday is all about yet. (Why on earth the all-of-a-sudden presents and this cake? Why am I blowing at fire? I like the birthday song, but why is my name being inserted now?) I bought her a book, "Happy Birthday, Bunny," which in a very sweet way attempts to explain to the little birthday bunny why the festivities, why all the noise? She asks questions and gets answers along the way, but near the end, the little one asks the question that sinks my heart and resonates through this week of Grace.

"What do you mean that time just flies?"

I love you, baby G, my super Gracie Robin girl. Happy Birthday.

P.S. Just kidding, Paul. I did find this.

Wednesday, October 30, 2013


I haven't posted in awhile and it's been hazily hanging over me, not because I believe people are on the edge of their seats waiting for my next string of sentences to be "published" and not because I'm unwilling to give myself a two month break from the very manageable once/month posting I promised myself I would definitely do. But mostly because a) I've been doing a lot of playing, and b) I haven't been quite sure where to go from my previous post.

Legos should never get
too comfortable in their Lego boxes
when in the Damaske household
About two months ago, it was confirmed that I'm BRCA 2 positive (you might already know this). I think I've been counting on myself to have something original to say about this development, something worth sharing. I figured somewhere between August and now that my brain would process this news and bend it into a uniquely reflective message. One day I'd be assembling a coast guard Lego boat with my son and everything would click into place.

Of course, I was hoping (and sort of even cautiously assuming) that I would test negative for the mutation. I might have even had a developing post in my head, thanking my lucky stars for landing in the far better half of the 50/50 odds (isn't that sort of sad? that I can't even use that line?). But, I didn't test negative and though I've known this for awhile, I haven't the slightest idea what to say about it. It's bad, of course; its best solution will result in physical losses that hardly seem real and it threatens its own sort of mental havoc, but really, all it boils down to is here is a fact about me I now know; decisions have been made, doctors have been consulted, and it seems like my only choice now is to move forward in misery or in good humor. And my gosh, how dare I choose the former.

I keep thinking about this talented, warm-spirited, extremely young teacher in Danvers, swept away a week ago from a seemingly full life where she appeared to be so very present. She has a pinterest page that I looked at for a good long time and while I know very little about pinterest and how much goes into maintaining one's page, she clearly put thought and love into hers. She had plans for Halloween on there, but also plans for Christmas, and dreams about specials details she would include on her wedding day after she found her future husband, and even ideas for different things she would do with her children when they arrived.

The page itself, in all its thoughtful detail, reveals so much about this vibrant woman, what she treasured and where she wanted to go, and it is heart wrenching that all of that is now shattered. But for some reason, looking at it made me feel a shred better. It allows the person who never knew her (but would have loved to know her) to envision her future exactly as she wanted it; I can see what she adored and imagined for herself with no other strings attached. To me, it all plays out as she has it designed on her page and in her mind: In my vision of Colleen Ritzer, she does get to visit the Full House home in San Francisco, and she does get to wear her hair exactly the way it looks on several of the pictures she pinned for her someday wedding day, and she does take a photo of her young daughter in her wedding dress so that she can give that picture to her daughter on her own wedding day. I never knew her, but I wonder if she'd like us to click through her pinned pages as we would flip through a film strip, thinking yes, this is her life, this is how the pieces all flowed together.

None of us have any idea how outside factors are going to fuck with our plans, no matter how damn hard we think about them. Sometimes, horribly, entirely unexpectedly, time just freezes in the midst of living. You are thinking about your day, how you are going to reach out to a friend or child in need, you are planning your weekend, you are feeling good about things, and then, abruptly, it's snatched away from you. Here's a person, it seems, who loved what she was doing as she was doing it, appreciated what she had while it was happening, thought about her future while enjoying the moment, and taught, at a very young age, values that some, so much older, never learn. She has in the past week become well known for a tweet she sent out this summer: "No matter what happens in life, be good to people. Being good is a wonderful legacy to leave behind." Twenty four years old and she completely got it.

Once in awhile, for those of us who are here, we are subtly reminded to look around for a moment, enjoy this, take it in. I have spent the last couple of months meeting with doctors, talking through statistics relating to the gene mutation I officially carry. I've been asked to think about my own priorities and to make choices concerning what I'm willing to do to myself in order to prevent the probable life-threatening outcomes. You need only take the tiniest step back from the world you are so wrapped up in to find immediate perspective. If I'd had the courage when I was young, as Colleen did, to lay out just what I wanted out of life and make it known to anyone other than myself, I think I'd be just about out of other things to want at this point, aside from having my mom in the picture. How dare I threaten in any way what I have now. So, yeah, off with the boobs, out with the tubes, goodbye to the ovaries, but I'd love the rest of me to stick around. You get the head's up about something like this, you better consider yourself one of the lucky ones.

And there it is, the message I've been trying to figure out; it comes to me as I write and I realize, of course, that there's nothing new about it. It's the outlook I must have had before because once I was a kid and thought like a kid. And then, later on, my children arrived and began to reteach me the crucial lesson. Be present, be here, it's a moment, just a flash. This is where joy is easily accessible and empathy most effective. Take this in; you only have a moment.

I look sweet, but
just try and put me in a
carriage when I'd rather be
Gracie, almost two, collapsed in front of the grocery cart at Stop and Shop yesterday while the cashiers looked on with a mix of horror and sympathy. That was hard, but also a little hilarious. I groaned a little but also thought, "Ha! I'm here, this is happening. I'm that mother in the grocery store trying to get control of my toddler." A passionately angry little girl and a memory to embrace. My "no thank you, mommy, no THANK YOU" girl lay flopping on a cement grocery store floor because WALKING, not riding, is what mattered more than anything at that moment.

Two hours later, same day, Noah asked me to please clean up the bathroom floor because he was "dancing while he was peeing" (and maybe I'm the only one who thinks that's sort of awesome). These moments are tiny but outrageous; they are blips that are bulging with life. I write them down, I take pictures, I stare at Noah and Gracie's hands as they hold one another's. I need to store it, hold onto the memories while collecting the next ones. It's easy to have setbacks from exhaustion and impatience - I have plenty of them - but by the end of each day, when all is quiet and the house is asleep, I find my way right back. I miss my wild ones. I sneak into their rooms and look and there they are. How can I not thank my lucky stars that despite everything else, I have this, right now.

Friday, August 23, 2013

August and everything after

Last week, I was able to put a barrette in Gracie's hair for the first time and it stayed that way for maybe four or five minutes. It was a huge moment, the first time she's had enough hair to accessorize, and I took a great deal of pictures and she knew it was huge and she smiled real big and felt it in her hair, but didn't try to yank it out for, as I said, at least four or five minutes, when it was on the verge of falling out anyway.

Two weeks ago, we celebrated our annual Hamilton family summer vacation week away in Maine. As the tradition goes, we dressed the whole crew of kids up in matching pajamas and attempted to take a picture that included all faces, looking in one direction, not crying. I looked back at videos of the photo shoot later that night and watched Noah. Every clip showed him holding his sister close on his lap or trying to make the other kids laugh. He is the oldest and he is starting to own it and I'm proud.

They are here. The little ones I dreamed about for oh-so-long, they're here they're here. I can't believe them, can't believe our fortune.

I watch these two and try in my mind to record every moment and some moments, the wearisome ones, go in slow motion, but the rest fly by as years do.

The day I found out I was pregnant with Noah, I immediately drove to my parent's house bursting with the news. I held it in when I arrived, waiting for the perfect moment. Timing can be so strange. We were sitting at the kitchen table and mom, who'd been diagnosed with ovarian cancer three years prior, started to cry and she said, "We have something to tell you." And then they told me mom was BRCA2 positive, results were in, that's why the cancer. And mom cried more because of what this meant for her kids, but as a 29 year old brand new pregnant lady, I saw this as the perfect opportunity to introduce my new little 4 week old fetus with some line like, "Well, that will be important information for me to pass along to...[ta da! here's my news!]"

The second time I found out I was pregnant, I was in my mom's hospice room. My body producing new life, and hers, exhausted, slipping away from us.

At some point, and not too late, you have to do something with this rather crucial piece of information about your potentially, uh... blemished genetic makeup. I saw a prophylactic surgeon a couple months ago, and she put things in fast forward.

"Are you done having kids?" she asked me to begin the conversation.

"Uh, yeahhhhh, maaaaaybe. Should I be? I guess I am, but maybe not for sure. Um. Yes. Yeah, we're done." (And in my mind, of course, I'm still clinging to thoughts of the third 'accidental' child I had been holding out hope for.)

She was kind and waited for me to verbalize this decision we'd made, to silence myself and make eye contact again.

"OK. I am here to advocate for your children. The recommendation is simple. When you are done having kids, if you are BRCA positive, we recommend prophylactic oophorectomy as soon as possible. You should really consider doing this. He sure can't raise those kids by himself (gesturing to John)." We laughed. "You are at risk now and if you get this cancer, you are probably not going to make it."  I guess you can be as honest as you have to be when speaking in hypotheticals.

So after five years of wondering if I would do it, when I would do it, and what I would do after I knew, I decided to get the blessed blood test. I took the little ones with me, stared at them the whole time with anxious and damp eyes.

"So Mommy, why are we going to the hospital and not just the doctor's office if you just need to make sure your blood is okay?" Noah asked on the way. He asked more questions as I attempted upbeat, simple answers, until he felt satisfied that all was probably fine.

I read every word of the paperwork slowly, stared at the collection of numbers and letters that designate the exact mutation site found in my mom's BRCA 2 gene. I looked at the summary of my family history, made up of each person with likely or confirmed BRCA mutation, all with a status listed alongside their names. Deceased, deceased, breast cancer survivor. I looked around the breast cancer center waiting room, at women in head scarfs and tired faces. My kids sat, one in a waiting room chair, the other in a stroller, each blissfully snacking on goldfish.

I wheeled Grace into the room, walked slowly at Noah's pace. I didn't watch the needle go in, but instead answered questions about the kids to the phlebotomist, who called me sweetie and honey many times and I wanted to thank her for it.

And then, I can only assume, my blood got shipped off to the BRCA Screwed or Spared Center... or something like that.

And now? We wait until next Wednesday night when we have our scheduled call with the genetic counselor, who will report whether I am positive or negative for the mutation, flip of a coin odds. The plan, of course, is to have the little ones tucked snug in their beds at this hour, so that we can sit and hear the news and process quietly together. But in reality, of course, it will be one of the nights when we hear from upstairs, "Mooooommmy? I need to be wiped" and "Mama Mommy Daddy Daddy Mommy Noah. Help. Binkie." And a-bang bang bang stomp stomp waaah. That's what we'll hear and actually, that's what we'll need to hear.

I talk about my mom so much in these posts, and her cancer, and my kids, of course, and how it's all intertwined and wound in between and how life and death talk to each other when we look closely enough. It all feels so self-indulgent and makes me cringe a little as I re-read it. But, at the same time, at this point, right now, I can't imagine what I would write about if not this. I think I do need to capture all this somehow. But next post will be different, uplifting! Or... if not the next one, definitely the next one after that.

I asked my dad the other day if I looked like Grace when I was a baby and without hesitation, he said, "Exactly." I looked at some pictures, which I hadn't seen in years, and I said, "Yeah, exactly. Huh." John and I have created these amazing little lives from our own and it's all so crazy and oh my God they're here our angels are here. So, now we'll see which side the coin landed on 34 years ago when I started becoming me. And maybe it's bad and I'll have to get the same organs removed that produced my babies and sustained them for the first few months of their lives. Remove what once defined my womanhood, all so I can hang onto this beautiful life.


Wednesday, July 3, 2013

Sister in a stocking and other adventures of siblinghood

"She's wiggling," Noah used to say during those few sweet moments after I'd handed him the baby, surrounding them both with pillows and stepping back. "I felt her wiggle." Those really were the first observations he had about his baby sister, that mostly she just lay there sleeping and sometimes she moved a little. She was also always drinking milk, which was probably the most interesting thing about her. He asked me one day if one side I fed her from was chocolate milk and the other side just regular.

He wanted to know when she was going back where she came from, when she could talk, when she would play with him, when she would run around. The answers were frustrating: She's staying, she'll talk later, just wait longer, not for awhile. And all in all, in the nearly three year old's head, she was a pretty easy one to ignore.

One glorious night, we maneuvered her entire tiny body into a giant Christmas stocking and handed the whole package to Noah for our 2011 Holiday picture. We saw a sparkle, an "I am loving this" moment that took over him entirely, so that he exhaled the most raw and delighted laughter we'd heard in awhile from him.

That poor baby, who does that to their baby?

But then he had to hand her back and the moment was over and she was just lying there again, not in a stocking, ready to sleep or eat or poop. And he was empty handed and ready to move onto the next game.

She's a year and a half older now. She walks, plays, runs. She had her first real cup of chocolate milk the other day. She says things. And she says "Nooooooooah" most of all (to which he says, "What, Gra? Graaaaaa.... what? what is it?" To which she is silent and then eventually says, "Nooooooah" in a louder voice. And he responds, "What, Gra? I said, 'What' like a thousand times, Gra". And then she says, "Hi." So he says, "Hi, Gra."). He calls her Gra (read: Grey), but when he's mad, she's GRACE. When he's feeling sweet, she's Grace-a, and when he speaks of her in the third person, she's usually Gracie. He doesn't know it, but he's created his own little dictionary of Grace terminology. He doesn't know it, but she is now part of him, infused into his little growing bones, wired into his overactive little brain, showing up in all his thoughts. Wake up (Gra!) - Eat breakfast (Gra!) - Run around (Gra!) - Toys Play Sleep Eat Grow Laugh Cry (Gra Gra Gra!). He can't hand her back now and he never ever would.

She's the first thing he wants when he wakes up in the morning. "Is she up yet? Oh... I'm sure I just heard her, mommy. She's awake. Let me go keep her company before you come get her." When he gets mad at her, which is a normal amount of the time (I think?), it is almost always for good reason (hour long project of setting up a Lego fire station with 10 firemen sleeping on 10 individually created beds in the sleeping quarters? SMASH. 100 piece puzzle, first 100 piece puzzle ever done without help? DEMOLITION. Tiny sandle-footed wrecking ball will go where he goes, add her "touch" to his work). And he gets angry and says, "GRACE. I'll never be your friend again, EVER!" Moments later, he is calm, and she always becomes his friend again. There is no choice here and I think he knows that, but that's not why he goes back to her.

We walk a lot, as she rejects the carriage more and insists on being with him and with me. She steps on to the sidewalk, puts up her hands on each side, and we each grab onto her, as she tightens one hand around one of my fingers and places the other hand into his. He doesn't love it (she does) or resist it. It's just what he does now, what I do, what all of us do when we walk. Linked hand to hand to hand to hand.

We're together all the time, we three, especially these days, now that it's summer break (woohoo!). Days can get long and evenings often bring a sense that things are starting to unravel. This sense turns immediately into reality, as one child (me included in that category) falls to pieces and the other two (me included) follow shortly behind. One falls down, we all fall down.

Monday night was one of these nights, Grace with an oncoming cold, refusing to eat anything at all. Me in one of those exhausted dazes that so often come on at 5:00 at night, the kind of zoned out that has me separating piles of mail into Recycle and Keep and then recycling the Keep and keeping the Recycle... and then not even laughing about it when I realize it.

And at the dinner table, tears that I don't often see from Grace now dissolving into sobs. Desperate for her to feel better, I decide to give her a bath. And then Noah appears in the bathroom with us, also in tears. "I'm sick! I'm sick too, Mama! And I'm hungry and I don't want that food that you gave me!" And me, head in hands, blood boiling hotter, haze breaking into fed-up clarity and "HELLO, FAMILY? WHERE'S MY FAMILY?"  (yes, he says that).


John's home.

Our broken pieces, like silly, singing giddy cartoon characters, immediately dance ourselves back together. Our collapse becomes comical and we embrace our hero (though we think of him only as daddy), the final set of this family's hands wrapped tightly around us.

Grace wiggles out, unbathed and naked, and runs into her brother's room, with him not far behind.

And...what does an upside-down
peace sign mean? Because that's what I'm doing here.
I hope it's nothing bad.

Monday, May 20, 2013

Charities and Tourniquets

It's been about a month now, long enough for the majority of us to go through several thoughts each day before remembering the tragedies of the Boston marathon, but close enough that the eeriness still lingers and the memories feel more sharp than dull. I wonder if I can't jump into this brief window in time and add some other images that may even rest next to the pictures and stories already so deeply engraved into our minds.

The MGH Pediatric Oncology Marathon Team comes together for a private pasta dinner the night before the big race every year, and for the second year in a row, I got to attend as my Dad's date (he was one of 107 runners this year). It is a night for the runners and their loved ones, but it is especially a night for the little ones they run for who are currently undergoing treatment for childhood cancer, and it's for their parents, and their siblings. It's the sort of night when tears swell your throat the moment you arrive, and you know they are not sad tears or joyful ones, but that they are both.

At every table sits at least one child patient surrounded by family, and you look at the parents, and you haven't the vaguest idea what really they've been through, but you look at them, and they are smiling, and they are laughing, and they are working on motivating signs for the runners and telling their kids to eat their dinner and to stop hitting their brother and they are just like you. And this could happen to anyone, and you know that, but they are experiencing it. You watch the kids and they are happy kids, resilient beyond belief, sneaking desserts, many running around, some sitting because they want to, others sitting because they aren't able to run right now.

This year, two women, both runners, spoke at the event. Both women were also treated for childhood cancer at MGH, and both, so many years later, were running the 26.2 mile race on Patriot's Day. I couldn't help but lean over to 11 year old Stephen, who dad runs for and whom I adore so dearly, and say to him, "That is going to be you someday." I really believe that. And he to me, "I hope so."

The medal ceremony, April 14, 2013
The night embraced the children with warmth and the families with very real hope. The runners, who'd been training for months to run for hours, were never once in the spotlight except when honored with the role of putting medals around their little patient partners who stood proudly on a stage if they were able.

Pre-race breakfast, Marathon Monday, April 15, 2013
At race, looking for snacks and dog-watching
The energy carried, seemingly without pause, straight into the next day, Marathon Monday. Noah, Grace, and I arrived at the 20 mile mark in our matching yellow MGH Marathon shirts and black pants, ate some lunch with other MGH fans, found Aunt Jan (dad's sister), and chose our spot to stand amongst the MGH team supporters. The day, all sun with the slightest breeze, wrapped itself around the fans, the runners. Umbrellas and parents shielded the little warriors who could attend, some with no hair at all, from the sun. But the energy was with everyone. I taught Noah how to cheer ("Go Go Run!" "You're almost there!" "Looking great, keep it up!") and Grace, for once silent, stared wide-eyed at the scene.

I left the kids with Aunt Jan and ran upstream to catch Dad, thinking he'd enjoy the company for a half mile or so. As I walk-jogged along watching for him, I listened to Boston; I heard fans saying to fans, "Hey, you're a really good cheerer" and a man on a microphone gave a shout out to every runner with a name on their shirt. The embarrassing, I've-never-felt-lazier-in-my-life moments where runners raise their arms up, asking the fans to cheer harder... those didn't even happen much this year, because we were already there, cheering freely, loudly loving our runners.

When I saw Dad, I sailed over him with pride, my feet barely touching the ground, eager to be at his side as he steadily (albeit perhaps more slowly than earlier on) made his way to mile 20. Once I figured out I had to slow it down a bit because he had 19.5 miles on me, I talked to him and said helpful things and gruffly (as if I had a right to act like an exhausted runner... but, oh, it was fun for that moment!) asked an enthusiastic Gatorade hander-outer for some Gatorade (for dad, not me) and the man said, "Yes, yes! Do you want two?" And I told Dad, as he kept running towards Heartbreak Hill that he had this, that I promised he was going to finish, that I couldn't even believe what he'd already done.

About 20 minutes later, the optimistic energy so thickly wound between patients and runners and fans alike dissolved into desperation. Nobody needs those moments rehashed; we all lived it in some way. For a few moments that afternoon, as I gripped my phone, white knuckled, waiting for dad's call, I lost all my faith in people; I felt hatred. I knew a person -- or people -- had done this. It is a shameful admission, that I felt that hate, and just as quickly as it came, it did pass and really didn't come back, and hope regained its place. Because that  day, that day. The shirts turned into tourniquets; the finishers who didn't rest but ran again to help save strangers; the sirens, the endless sirens screaming down the road to help save, make it better.

Now, think for a moment about the runners who were on their way towards crossing the finish line after the critical 4 hrs 9 minutes time seen on so much footage from that day. Most of the post-four hour runners would not have qualified by timing standards to run the Boston Marathon. Rather, they were running for charities, for Dana Farber and the Cystic Fibrosis Foundation and MGH Peds Oncology. They'd spent months raising thousands of dollars and awareness for their causes. They ran with names on their shirts for people they'd lost and people they were honoring and people who still have a chance. Boston made us so proud that day the way it stepped up and gave itself to all in need that particular afternoon. But it's worth remembering that the kindness was always there, the spirit has always run deep, from the front of the pack to the end, from those who finished and then raced to save lives, to those who ran in the first place for just that reason.

Grace in her Marathon MGH "dress"

Tuesday, April 9, 2013

Song of the season

It's such an important time of year, Spring. It's a season of new life, whether you're thinking of it from a weather-wise or Christian or tax return perspective... for those of us who have drudged our feet and our shovels and the bottom edges of our pants through the chill and at times bitterness of winter, it is simple warmth and light. For those of us who look for signs of hope in life, this is the season where nature throws us a bone in pretty much every direction we look. Even as the skies cloud up and rain pours down on us, we don't so much care, because it is our instinct to search for the sun that is bound to come out... if not in five minutes, at least by the next day. Even if this isn't true, it's what we believe. It's what I believe, right now, sitting here on my couch in early April, and maybe that's because I've forgotten past years of April showers.

Even in my neighbors' group on facebook, where there has been a predominant silence throughout the past several months, new friends are emerging and telling us about their just-born babies and those on the way; they are telling us they have moved into the homes that have been newly built; connections are being made and plans for seeing one another being etched. I hugged my next door neighbor the other day because I hadn't seen her in five months. She lives next door.

Grace seems to be feeling a new freedom of expression these last few weeks, singing more and dancing wildly, spreading impassioned tantrums throughout the day. She “scared” John the other day by popping out and saying “boo!”. When the front door is open, she sneaks outside now, no longer afraid. She freely asks for what she wants (“cookoo” = cookies, “caca” = crackers, “ga” = grapes. And ps, those are the three things she eats) and she celebrates when she gets them (“yaaaaaaay”). Behind our tiny, soft headed Gracie we’re seeing a giant whopper of a girl.

So, it is discover the world season for little ones, field trip season for kids, prom season for high schoolers, date season for parents (is that true? It should be true). It's senioritis season for graduating seniors and flip flop season for all. As mundane a small talk topic weather is, sometimes it truly becomes all we care about. A weather that heals runny noses, dry skin, doldrums, and disconnectedness.

Easter egg hunt 2011, Haverhill House
Now you'll notice the darkening mood of this post and I'm sorry that it's unavoidable. There is depth to Spring. My mom's last season was Spring. I don't remember what the weather felt like -- I didn't feel it much -- but I remember seeing the brightness of days through her giant hospice room windows. There was an Easter egg hunt outside the same clear glass, where heidiandnoah were carelessly running around, right past giant eggs that the grownups, momentarily joyful, pointed at aggressively (not to forget Anna wee Anna Virginia, too little to even crawl). There were benches out there where we sometimes went to think and cry, alone, and I know she saw those moments, that we weren't alone at all. There was the day, very near the end, when she was mostly unconscious, until we brought her on her bed outside in the breezy warm air. She woke up for awhile; she loved it. I thank Spring for that day.

When I think about this season, I cannot separate her from it. She is engrained in it, from the day she gave birth to me (the first day of spring), to the middle name she gave me (Hope), to the backdrop of her final rest.

I have a dear friend who is watching her mom die right now. And I actually wrote this post in the hopes that she would read it. I don't know why; it won't make her feel better. I am not trying to tell her that all her springs will be marred by the memories of these days, nor am I trying to say that this is a forgiving season for your mom to be taken from you. I am not trying to say she should hang onto hope or appreciate the tulips right now or any other such babble nearly absent of truly useful meaning. But maybe I'm hopeful that she will somehow seek solace in Spring, that the rain will soothe her and the sun will wrap around her... and that just when she can't handle the warmth any longer, a thunder shower will appear and call out to her in empathy. And though I know she can no longer hope that brain cancer isn't going to take her mom, perhaps Spring can remind her, in the surprises it brings, that there is always a reason to hold onto the hope that she will see her mom again, in brighter days.


Tuesday, March 5, 2013

Sitting in a homemade tent after a coffee cheers

There's a lot of time that passes between the moment we wake up each day and the moments, 13 hours later, when the kids settle into bed. It's normal now that we wake up without much of a plan and just blindly feel our way through our days. It's not a life I have experienced since I was a baby girl and a toddling girl and a preschooler (well, actually a "Tuesday schooler". Things were a little different in New Mexico in the early 1980s). I can't say that I ever truly considered what days would be like with my full time job being to teach and play, fix meals and bumps and teary eyes, and keep everybody sane enough and hopefully happy. But this is what I do now and it's a change, but a nice one, a tough one, and a period I know I will miss deeply someday.

I wondered before I started this just what would constitute a day at home; it was hard to imagine. It evolves, of course, with their age and their interests and their moods and my moods. But *usually* our mornings start earlier than anyone (but Gracie) would like. We have given up on the idea of her ever going back to sleep in her crib once we hear the initial "yeeaaaaa!" call from her room. Every morning we are surprised by how early it is she wakes up and we stumble to her room and she clings to us and we take her to our room, flop her into our bed. We stay silent and quietly beg her to do the same, which she usually almost does. We never give up hope that she will accidentally fall asleep in those first moments in our bed. But soon, it's all just too much and she eventually bursts out joyfully and sits up for the purpose of falling on top of us, over and over, laughter growing. In walks Noah, aggressively rubbing tired eyes, and the day begins.

It's 6:30 am, let's dance!

Fast forward an hour and we're at 7:30 am. Gracie has already rejected at least three breakfast items I have tried giving to her on several different types of spoons and Noah has abandoned his half eaten yogurt in his haste to get Lego-ing. He has graduated recently to the tiny Legos that come with instructions, which he very confidently calls "constructions" (has anything ever made more sense?). A few mornings ago, he spent about an hour studying the booklets that show the scenes that only children with every Lego on the planet can construct over the course of their entire childhood. We are slowly figuring out that when we build things, we have to build them high - up on a table or, better yet, up in his bedroom, where the little walking, screeching, flailing fuzzy headed monster can't reach him.

He does his building with his Legos and his regular blocks and his castle blocks and sometimes with things that are just lying around. Here he is describing a one clown circus he recently created:

He is a puppeteer now, with measured control over the characters who act in his make-believe toy worlds. And buzzing around him, sometimes with a barking toy dog in tow, always one step from a stumble, is his little sister, whom he adores. He lives on constant tornado watch, anxiety elevated slightly much of the time. It's a new obstacle for sure, but he seems to accept it, and sometimes even calls her "honey". "Honey, don't go near Noah's castles." And then are the other moments, "GRAAAAAAAAACE! I AM SO MAD MAD MAD! THAT'S MY CASTLE! YOU RUINED IT!" Sometimes she says "uh oh", but mostly she seems not to notice the outburst and continues on her way. I sit by Noah and either compliment or comfort him, depending on what has just gone down.

Moments later, I hear "uh oh uh OH... Yaya!" (I think she calls me Yaya (which I believe is not a mommy name, but a word for a Greek grandma), unless she really, definitively NEEDS my attention, in which case she suddenly remembers how to say mama). I know what has happened well before I reach her. She stands outside the bathroom door looking at me and pointing. I run to the toilet, wondering what it is this time.... a binkie? the rest of her breakfast? her sippy cup? Last week, she stuffed a giant stuffed dog in there one morning and one of Noah's shirts the next. I scold her with muffled laughter and remind myself... again... to close the door to the bathroom always. We should get one of those toilet locks, I say, morning upon morning upon day upon evening. And then the thought goes away until the next time I forget to close the bathroom door.

I take a couple laps around the downstairs, wanting my coffee but forgetting where I put it down. It is 8:30, just about the time I used to arrive at work, put my bag down and scurry over to my coworker's office for our walk to buy coffee. Sometimes, these days, I pick up my cup from whatever precarious place I left it and raise my mug to her in a quiet toast. It's easy to imagine her doing the same (and in fact we've had an occasional few moments where we find each other online at just the right time and we take the moment to clink our mugs).

My nostalgic smile suddenly turns to an exaggerated response to a begging at my shins. "What can I get for you, little one?" She says, "baba!" very clearly and directly, which, ironically, comes with much ambiguity, as "baba" takes on the meaning of "baby", "bottle", "binkie", and "bye bye" in our house these days. I hand her a bottle, she laughs (I've guessed right!), and toddles confidently out of the room.

Noah calls to me (again) to come see his tent. It's made of living room blankets, the sheets from his bed, and all the pillows in the house. He asks me to climb in and I do. We sit together under there, holding up the tent with our heads, alone for a moment, and I want to whisper, "We're doing OK with all this being at home stuff, right, Noah?" Sometimes the words do come out and he says, "Yeah, shhhhhhh, Mommy, shhhhhhh quiet. Now get in closer, so nobody can see us."