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I really am the luckiest. Not only do I get to visit exotic (and warm!) locations around the world, but I get to do it with a group of girlfriends that is fun, funny, smart, interesting, brave, adventurous, supportive, nurturing, loving, hilarious and — least I forget — gorgeous.

photo-6The view from our beachphoto(232)Um, yes, we are wearing the Mexican wrestling masks we all bought for our kids.

photo(233)The little beach bar next door to our house, perfect place for drinks at sunset

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The view from right outside our bedroom window

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Beach bar again

These pictures are really nothing compared to the much better ones I need to download off Shutterfly. The jungle adventure shots of us ziplining, rappelling and aero-cycling are must-sees.

Thank you, girls, for making our trip such a super fantastic fabulous wonderful restorative and all-around special experience.  Mexico should expect us back again soon.

And thank you, Mark, for taking such good care of the boys in my absence and never once complaining.

Did someone say lucky?

I guess that last one should have been titled The Year in Picture. This one can be the Year in Pictures.

2012 started with a family trip to Jamaica, with requisite swimming, horseback riding and playing with cousins:

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Once back at school, Braedan was the youngest kid in the district to join Ski Club. He enjoyed it immensely despite record little snowfall:

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At the end of February, Mark and I went to Charleston, South Carolina with friends. A wonderful weekend in a beautiful and charming city:

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March was dedicated almost entirely to St. Baldrick’s events, from the Bluffton Basebald trip to our Cleveland Heights event to the always fun downtown head-shaving. I was surrounded by bald people all spring long, which could not have made me more proud:

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Then we ventured off to Colorado for a spring skiing adventure, complete with an ambulance ride to the medical center for Austin’s low oxygen levels:

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We fully expected May to kick off the grand two-year cancer-free celebration, only to instead plunge into sixteen days of darkness and despair upon believing Austin’s cancer had returned yet again. A lucky double rainbow and a long overdue MRI provided intense relief at the end of the month and our good-year-gone-bad reverted to great.

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Then it was summer and all the joyous relaxation that comes along with it, including endless hours of baseball. baseball, baseball, swimming and waterskiing in Chautauqua and biking through Europe:

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Backroads 2012 076008017

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And of course, our tenth wedding anniversary and our super celebration-of-everything party:

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Fall meant back to school for Braedan and off to school for Austin:

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More travel, this time for Mommy and Daddy on their own:

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Plus birthdays and fall sports, school events and some “little” surgeries, a lot of lost teeth and holidays, holidays, holidays. Of course, this was all interspersed with fighting, crying, whining, random ailments and injuries, complaints about school and battles over homework, boredom, sibling rivalry and the like. But I suppose that’s what makes it all worth it. The year ended with a few days of skiing in Chautauqua in near magical conditions:

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It was definitely a year to remember, filled with significant milestones and an awful lot of globe trotting. But what matters most is what remains: health, happiness, family, friends, luck, love, laughter. We’ve got it all.

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It was magical.  That’s really the best word to describe it. The weather held out beautifully and the party was most certainly held outside in the yard, where we had always envisioned it (and what we — ahem, Mark — had worked so hard for). It had a wedding-like quality, which was both good and bad.  Bad only in the sense that all these people had come to celebrate with us and we managed to have very few meaningful or long conversations with anyone. It was lots of quick minutes with one group or another before moving onto the next arriving (or departing) guests.  I now want to have many smaller gatherings where we can actually sit and connect with our friends (and boy, do we have the leftover beer and wine for that!).

I do have two regrets. The first, pretty minor, is that I fully intended to use my last blog post to ask people to take their own pictures and post them.  That way I would have seen the evening from many different perspectives, all the small groups that formed here or there, on the lawn or the porch or even the treehouse deck. But I totally forgot and it wasn’t until the sun had already set that I thought to ask our helper girls to go around and snap some shots.  The flash on my iPhone isn’t very good, but they definitely managed to capture the magical quality of the yard with all its twinkling lights.

Shiny happy people

Representing the westside

(You must all know that, if you’re in my life, you have implicitly granted permission for me to publicly display your photos, official release form or not. And you all looked lovely anyway, so no complaining.)

My second regret is much bigger and it’s that I didn’t take advantage of this once-in-a-lifetime opportunity to thank everyone publicly.  You know that whenever there’s a microphone available, I find a way to speak into it! And yes, we had a microphone and yes, I had something in my head to say, but there never seemed to be the right moment. It all went by in a flash, until suddenly I took a breath and there were just fifteen of us sitting out on the porch (which we did until 3am). When one of my girlfriends said she was surprised I hadn’t spoken, I said that I’d intended to, and they then convinced me to stand up and do it right there.  I felt a little silly, since I was speechifying to my nearest and dearest (and a few late night randoms) but of course, I didn’t need much arm-twisting.

I will write it to you here tomorrow, I promise, a belated Thank You edited from what I can only imagine was some margarita-induced rambling. But for now just accept our thanks for coming and sharing in the specialness of the night with us. And thank you for all the wine and gifts; I made the stupid mistake of separating everything from their cards and gift bags as soon as I opened it and now I can’t figure out who brought what. Oops!

And one more photo of the party aftermath … tonight’s recycling:

I’m baaaaccckkkk.

We’ve just spent two weeks in Chautauqua and the boys are now finally at an age where vacationing with them feels like, well, a vacation. Even when my husband is back in Cleveland.

They made some new friends up there who happen to live just two doors away and it was play, play, play from morning til night. I love that kind of freedom, reminiscent of the 70s and 80s (and surely earlier) where the kids can just wander off to knock on someone’s door: “Can Taylor and Amanda come out to play?” The unplanned, unstructured playdate is not dead, I assure you!

So much of being there feels like stepping back in time. From the rocking chairs on the front porches to the unique thrill of sparklers to the carnival-like amusement parks.

Remember these old school rides?

Of course, they’ve been modernized with the addition of a rock climbing wall:

 

We even got Braedan up on water skis, which brings me further back into my childhood.  Hours and hours out on the boat, circling around as the latest water skier masters their craft. He was fabulous and so so proud of himself.

So, now I dig my way out from the piles of mail and laundry … and the stifling heat of Cleveland in July. With images like this in my mind:

 

There are seven kids in my backyard right now. Four boys and three girls, ranging in age from 4 to 10. Most of them just appeared, by biking around the block or by climbing the fence at the edge of the yard.

They’re hard to see but there’s one on the trampoline, two on the monkey bars and four in the treehouse.

And it’s not just today. Almost every afternoon, Braedan brings one or two friends home from Fairfax, racing down the block with backpacks slung over their shoulders. Then another one or two (or sometimes four) neighborhood kids will appear, usually on their bikes, which lay scattered over our driveway.  The remaining daylight hours are filled with laughter and screeches as they jump, climb, slide, swing, bike, kick, chase, or scoot from the back to the front and back again.

I love this. I love that few of them are preplanned playdates, with drop-offs and pick-ups.  I love that I can glance out my kitchen window and check on them when I can’t tell if the screams are of pleasure or pain (they’re usually of pleasure), but can also just let them go, trusting that they’ll find me if they really need me. It reminds me of my own childhood when all the neighborhood kids played together, no matter our age, endless twilight hours of Ghost in the Graveyard.

This is how it’s supposed to be.

We’ve been in Chautauqua for the past ten days. Each day I think I’ll go brrow my dad’s laptop and dash out a quick update but somehow my days are filled and by the time the kids are tucked into their bunks at night, I am done. Mark was here for 4th of July weekend and then it’s been a steady stream of my girlfriends and their children. At one point, we had seven kids in the house, all younger than Braedan. Between waterskiing and tubing, running and biking, shopping for, preparing and cleaning up after the never-ending mealtimes, we are all plenty busy … and plenty tired.

The kids are at such a better age for a trip like this without Daddy. They’ve got friends to entertain them day and night and, with Gram and Gramp right next door, there is always someone willing to go fishing off the dock or give an extra push on the swing. It’s really been quite nice and, according to Mark, we are very lucky to not be home since the painters are going full force, resulting in the entire house’s worth of windows being covered with plastic (not so nice when it’s 90-plus degrees out … and no, those hundred-year-old houses do not have air conditioning!). 

But I am super excited to go home and see firsthand the progress that’s been made. The pictures Mark texts me at the end of each day are pretty fabulous. The painting should be done by week’s end and I promise that as soon as I’ve seen it in person, I’ll post photos here.

But for now, I’ll fall asleep yet again with the waves crashing outside my window and I’ll have my morning cup of coffee out on the porch and then the kids and I will plan another day of chock full of relaxing.

 

What a great trip. First it was four days in Cape Cod, with beautiful weather and old friends (well, they’re really Mark’s old Peace Corps friends, but they feel like my old friends, which is really really nice). Long lazy days of bike riding on the Cape Cod Rail Trail, kayaking around the pond and indulging in Maine Wild Blueberry ice cream cones (yum).

Note the labels on the benches

Note which side we’re sitting on

Long lazy evenings of grilled dinners on the deck, kids playing happily and competitive puzzle-building (yes, puzzles can get competitive!).

Then it was off to Boston, a city filled with nostalgia for me. The kids enjoyed the swam boats in the Public Garden and the Duck Tours past all the historical sites, ending with Braedan steering the amphibious truck in the Charles River. A rainy afternoon at the New England Aquarium, followed by an always-too-short visit with my college roommate and her kids at Quincy Market. When we woke up to rain yet again on Thursday morning, we decided to hit the road early, skipping the planned visit out to Tufts, which was really just for me and would have only been a bunch of brick buildings and grassy hills to everyone else (and probably another ice cream cone for good measure).

All in all, it was a perfect blend of beautiful nature and beautiful city, from cartwheeling in the sand along the ocean to running down the path along the Esplanade. Friends and family, old memories and new memories, good food and, well, … ice cream.

All along, throughout this entire cancer journey, the function of Austin’s kidney has been a guidepost for us, a signal of which way the wind is blowing. It has given us hope, it has given us something to fight for, it has at times taken on enormous (and perhaps undeserved) significance as the determining factor in whether we felt good or bad, victorious or defeated, hopeful or hopeless.

And now it seems on the verge of failure.

Not right away, this won’t happen overnight. But it is definitely starting.  His pre-chemo lab numbers this morning were not good, although they did improve after several hours of IV hydration.  In fact, his doctor wants us to go home with “fluids in a bag” for next week. We’re also moving up his end-of-treatment scans (MRI and chest CT) to next week, before any more damage is done.

We’re not sure what all this means yet or how long the kidney might still last or whether it might pick back up again when the immediate stress of chemo is gone. But I’m sad. Sad for my little guy, sad for us all. Sad for that kidney that has been so traumatized and yet worked so hard, that has gotten back up after being knocked down so many times.

Yesterday Austin had one of his little preschool friends over for a playdate. We were talking a bit about school and how Austin misses being there and I gave a quickie explanation of how his medicine sometimes makes him more vulnerable to getting sick so he can’t be around all the germs and so on. And this sweet little four-year-old shook his head and said, “But medicine is supposed to make you UNsick.”

Ah, if only four-year-olds ruled the world.

Well. Wow. What a day.

I’m not usually at a loss for words (and I’ll surely manage to find a few now), but that was just a really great day.

Started off with me and Austin eagerly waiting through 50 painful minutes of the morning fluff on Fox 8 (my deep apologies to anyone else who also suffered through that — if you taped it, just save yourself and skip to the last ten minutes of the program, please!). But finally, there they were. First Mark and Dr. Letterio, sitting side by side with their half-shaved heads, talking about the importance of pediatric cancer research. And then, right when I thought the segment would end without Braedan getting his chance in the spotlight, they scanned back to the anchor table and there he was, sitting adorably on the anchor woman’s lap. And she looked just about ready to eat him up. With good reason too!  He was breathtakingly cute on that screen, all big eyes and pretty face.  I’m trying to find a link to it on their website but haven’t had any luck so far.

Then, by mid-afternoon, Mark and I and his dad were (wisely) in a taxi on our way downtown. A.J. Rocco’s was quite a scene — bottleneck at the door, people pushing their way through, sloshing the cups of beers raised high above their heads. It was reminiscent of my college years thankfully minus the bar smoke.  It was part party — hanging out with friends and drinking beer, and part hospital visit, surrounded as we were by our doctors and nurses strangely dressed in street clothes, not a white coat in sight.

The whole thing had an emotional tinge to it: random people hugging and crying, bits of heartfelt conversation wafting up through the ordinary bar noise. I was honored to meet some of the members of Team Austin we didn’t know, shavees who had simply picked my child from among the others on the St. Baldrick’s site, in part because of his cute smile and in part because they wanted to find someone currently “in the fight” (is he ever).  People who had never met us, for whom we were no more than a figment of the internet, but who nonetheless raised thousands of dollars in our name. And as I was gushing about my appreciation for all they did, they were likewise thanking me, telling me how proud they were to be part of this, how special they felt to be able to do this on behalf of Austin.

And then there was Cori. This woman had hair down to her waist, literally, to her waist.  We don’t even know each other all that well, but she just signed right up, like “Why not?” On her St. Baldrick’s page, she mentioned how when you see a child fall down at the playground, you just go and help, no hesitation. Well, this was the same thing for her: We walk to Fairfax together and wait on that playground, rain or shine or snow (mostly snow) for our boys to come dashing out the door, our little ones antsy in their strollers. We’re “playground friends” as she says. So when Austin “fell down,” she helped.

And help she did. She hadn’t raised a huge amount online, a decent amount but nothing worth the length of that hair. So when her turn came yesterday and her name was announced, the MC asked for extra donations. A few of us walked around the bar with leprechaun hats outstretched for people’s cash. Now remember, most of the people there had already given in one way or another, either money or hair. But most hands managed to fish out their wallets and give some more, because she came up with a whooping five hundred dollars on the spot.

And everybody watched with bated breath as the barber sniped off huge chunks of ponytail to donate to Wigs for Kids. And everybody teared up as the buzzer started working its way across that suddenly short hair. And everybody cheered when she stood up on the chair afterward to show how beautiful she looked.

The MC was standing next to me as I was cheering loudly and turned to ask if she was a friend. “She’s shaving for my son,” was my answer at that moment. But my answer right now is, “Yes. She is my friend.”

And that’s not all. Less than an hour later, one of Mark’s colleagues, the other woman on our team, walked in. And her hair was only an inch or two shorter than Cori’s! So the hats were passed around again and I was thinking, “These people just gave, there’s no way they’ll give again.” But give again they did, handing over another $377.  It made me feel a tiny bit guilty, these women with lush long locks willingly sitting on that stage, while I won’t do it and I’ve never even liked my hair! But I’ve suffered enough on behalf of pediatric cancer. I make my sacrifice every day. I’m keeping this hair.

Most of all I felt moved, touched, lucky. I don’t use the word “blessed” very often because it’s too religious for me, but I felt enormously fortunate. Fortunate that my life is so rich with generosity and kindness and friendship and love. That my husband and my children and I are surrounded by such an open and giving community. Yesterday made the heavy burden we bear feel, if not lighter, at least more tolerable. It made what should be an experience seeped only in negativity feel positive.

It made me feel full and whole and lucky. And so I thank you.

My sincere apologies (partly tongue in cheek) for not requesting anyone’s help on Thursday night with the whole key debacle. It honestly didn’t even occur to me to ask someone else to do it for me but I promise you I will the next time (although we do try to learn from our mistakes and hopefully there won’t be a next time!). It actually all worked out okay. I bundled Braedan up (in the thirteen degree weather, not 18 like I’d thought) and we drove around looking at the holiday lights while waiting for Austin to be released. At 10 o’clock, we pulled up to the hospital entrance and Mark delivered a very awake and excited Austin to my warm cozy car. The two boys literally shrieked with delight at seeing each other and squealed the entire way home. We let Braedan sleep in Friday morning and I brought him to school after 10.

Next, my sincere apologies (less tongue in cheek) for not updating the Carepage site when I posted here on Thursday. A few people told me yesterday that they hadn’t gotten their email alert and therefore hadn’t checked the blog. I insisted that I had updated the Carepage but when I finally checked it last night, discovered I was wrong (I have a few things on my mind, you know).

And finally, again sincere apologies (again somewhat tongue in cheek) for my multicultural faux pas with the Menorah lighting. Braedan told me last week that Hanukah started “on Friday” and so, fully trusting my five-year old as a valid source of information, we lit the first candle last Friday, the 4th! We had made it through four candles before I realized the start of Hanukah was actually yesterday, the 11th. So much for my attempt at religion. . . .

Enough apologizing (no one wants to hear the cancer mom say she’s sorry, right?). Our weekend has been lovely. Mark and Braedan went to the Cavs game last night (another source of squealing delight) and several of my girlfriends came over with wine and chocolate after Austin went to sleep. There was much laughter and some tears and way too many bottles of wine consumed, which added up to a near perfect evening.

This morning, the boys were picked up by their favorite family friend “Uncle Pauly” who took them on a surprise visit to Dunkin Donuts (“a Dunkie’s run”) for breakfast. Then they went back to Caryl and Paul’s to make gingerbread houses, an activity they worked hard on for many hours. This was good because we had a showing this morning and another tomorrow afternoon — our first  showings in weeks, how’s that for great timing?

Now we’re making lasagna and awaiting the arrival of Mark’s parents. We’ll traipse over to the General Electric plant at Nela Park to see the best lighting display in town, one of our favorite holiday traditions and then show off all the progress on the new house. After dinner, I’m off again with my friends to the alumni holiday party for our high school.

The boys are just delighted with everything lately. Austin is jumping and laughing and cartwheeling (yes, he knows how to cartwheel) more than usual, they’ve been bickering a little less than usual. Our Charlie Brown Christmas tree is up and decorated. Wishing stars have been arriving from near and far. All is good in this house. All is good.

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