Thursday, June 30, 2011

Guest post: Top 10 Reasons My Son's Cerebral Palsy Is Awesome

This guest post is from Shasta over at Outrageous Fortune; she's mom to identical twins Malachi and Jaden, who just turned 1 (so wish them a happy birthday). The boys were born 10 weeks early. Jaden escaped serious trauma; Malachi had a brain hemorrhage. Like Max, Malachi has cerebral palsy. Like Max, he is a fighter.

Shasta is an amazing mom and a writer who's not afraid to go there. Here's her list of reasons why she thinks her son's CP is a good thing:

1. I take no milestone for granted. When Malachi finally takes his first step or says "I love you, mommy," it's going to mean so much more to me now that I've had to seriously consider that he wouldn't ever be able to do those things. I can enjoy when he learns new things, instead of grumbling about how annoying those new skills are.
2. I have become acquainted much more quickly to the concept that my children will fail to meet my expectations... and in other ways wildly exceed them. This is no different than with typical children, just something I was forced to accept much sooner.

3. Malachi has a built-in way to feel special and unique. I don't mean this in the sense of "special needs," which, as a friend of mine said, feels like a cloying sugar-coating for what are really extra needs. But I do think that lots of kids and adults feel empty because they were never given something to own as being uniquely them. Strangers will notice Malachi and I'm sure there will be times when he can turn that to his advantage.

4. Malachi will also have a built-in way to feel part of a group. Already in my first year of this journey, I've found the disability community is tight-knit and full of many kind and interesting people. It takes some pretty rare circumstances to have cerebral palsy, so in that way he will be part of an exclusive club that gets to laugh at the rest of us.

5. I don't have to chase after two crawling, walking, running babies. First, let me get one thing straight: I absolutely hate it when anyone else makes the suggestion that it might be easier for me that Malachi is developmentally delayed. It's not. But in all honesty, I do have to admit that sometimes it is nice knowing I can still leave Malachi somewhere and he won't move or that I can leave something he can't have near him and he can't grab it. As they get older, it'll also be nice that I don't have to worry right away about how to cram two crawling babies into a single Superyard or that they will both run off in opposite directions.

6. Handicapped parking. Ahhh, handicapped parking. I firmly believe that every parent of new multiples should be allowed handicapped parking (in several states, they are). Before I had it, I would have to find a space wide enough or else squeeze myself and the baby carriers between cars on BOTH sides, haul the stroller out from the back, walk from this distant space to the store, most likely in the rain, and then wrestle all this back in again after picking up the one thing I needed. Other parents can just grab their baby, but with two by yourself, you have to have the stroller. So, even though Malachi's not old enough to even be expected to walk, I don't feel bad at all about capitalizing on his disability for a few extra months of awesome parking. Oh, and in case you think I got my permit through dishonest means, let me note that under Oregon's very vague definition of "disabled" for parking, any baby would qualify. (Also, I rarely use it if there is only one space available or at high-traffic areas, like grocery stores.)

7. I don't have to worry about typical identical twin issues, like that people will mix them up or think they are the same person because they look the same. This often makes me very sad that my identical twins won't get the full Identical Twin Package: tricking people into thinking they are the other one, having people ask them stupid questions like, "How do you tell which one is you?," and having strangers label them cool things like "the sports-y one" and "the science-y one" instead of "the normal one" and "the disabled one." But then I read a post on my twins group forum from all these parents fretting about their kids having identity issues and worrying whether or not to tell them things like which one is "oldest" for fear they will get a complex. I just had to laugh. We have much bigger fish to fry.

8. Malachi's therapies have given me a much greater awareness of my own body, as well as sharpened my Mommy Kung Fu skills. For example, I now know I can pull on Jaden's leg to keep him from rolling over during diaper changes and I can tell from the way his body leans which direction he's liable to snatch something from. I'm also more aware of my own body's position in space, which has helped me resolve some long-standing back pain. 

9. His abnormal muscle tone makes him categorically cuter than the average baby. Typical babies at Malachi's age are already on the move and wanting to support their own weight when you hold them. Malachi still loves to relax against you and mold his body to yours, resulting in utter adorableness like this:
He also smiles big and wide all the time, often with a big open mouth that says just how happy he is to see you. The degree to which his mouth is open definitely seems abnormal, but what's so bad about huge smiles? Nothin', that's what.

10. He and the rest of our family will forever see the world differently. Having a unique perspective on the world can be an extraordinary asset, whether it be in the labor force or the marketplace of ideas or simply as a good friend. Malachi will have to work harder because of his difference, but that will help him develop compassion and character.

I know this, because his disability has already helped develop it in me.

Tuesday, June 28, 2011

Tracy Morgan compares boys with disabilities to chimps. That's funny?

Ever since I read about Tracy Morgan making fun of "retarded kids," I've been seething. Today my friend Theresa emailed me, and I got livid all over again. "I always thought this jerk was overrated. And unfunny," she wrote. "Now I know he's clueless and insensitive."

After making anti-gay remarks a few weeks ago in Nashville (including the gem that being gay is a choice because "God don't make no mistakes"), Morgan was doing a stand-up routine at Caroline's Comedy Club. This time, his sketch involved poking fun at people with disabilities. "Don't ever mess with women who have retarded kids," he said. "Them young retarded males is strong. They're strong like chimps."

Huh?! He thinks that's funny? I know I'm not the most objective source, considering I have a kid with special needs, but that's just an all-out stupid comment. There's no funny in there.

Tina Fey came down on Morgan for his previous display of brilliant wit. "The violent imagery of Tracy's rant was disturbing to me at a time when homophobic hate crimes continue to be a life-threatening issue for the GLBT community," she said in a statement to TMZ. I wonder if she will say something about this, too. Perhaps Morgan should consider not talking unless Tina Fey's writing his lines for him.

A few months ago, when I wrote about tweeting at people who used the word "retard" on Twitter, comedian Carolyn Castiglia put up a post about how the word "retarded" is a mainstay of comedy acts. I say there are a whole lot of other words out there to choose from. The word "retarded" is demeaning to those with disabilities, even when it's not used in a directly derogatory way.

If people keep using the word in any context, people will keep thinking it's OK to use—even as an attack on those with disabilities. Worse, they'll think it's FUNNY.

Get a sense of humor, Tracy Morgan. Get a heart. And get a clue.

Parenting kids with special needs: Supermodel Max (and other games I play)

There's a little game I sometimes play in my head—let's call it "What will he be?" It's about what Max might grow up to do. Take the other morning. As I was rushing around getting ready for work, Max and Dave were playing baseball in our kitchen. Dave would pretend to throw a pitch. If it seemed off, Max would shake his head and Dave would cry "Foul!" and then do it again. If the pitch was good, Max would hit the ball with his pretend bat then zoom around our first floor, sweeping the pretend plates.

"Could he be a pro baseball player?" I wondered as I put on my makeup. On the plus side, Max can run pretty fast, especially when he's outside and it's time for him to come in; he loves to shoot off down our block and make me chase him. On the challenging side, I'm not sure his arms would be up to the task. Fine, he'll just play for fun, I decided. Who needs the multi-million-dollar pro contract.

And so the game goes goes. Could Max someday be a restaurant owner? A chef? An accountant, like my dad was and my sister is? A doctor? A detective? A pasta maker? A blogger? I've pondered them all.

There was another game I used to play when Max was a baby, What If. It basically went, what if Max had never had the stroke—would he be crawling now, like that baby? Or babbling like that one? Or playing with a toy like that one? Would he look different? What would he sound like? It was a totally depressing game. I grew out of it.

That same morning I played "Could he be a pro baseball player?" I found the above ad in a magazine during my commute to work. The kid totally looks like Max—the dark, extended eyebrows, the lush lashes, the big brown eyes, the smile, the teeth.

"Could Max be a model?" I wondered. OK, he's handsome (and I say that totally objectively, of course). He's not great with posing on request, but in a quiet setting with just a photographer around, it could happen. His speech issues won't be a problem, given that models don't have to say much on the job (for print ads, anyway). Could he do a catwalk? Hell, yeah. "And now, here's Max, modeling the last in purple!"

So I've decided Max has potential to be a supermodel.

The "What will he be?" game never leaves me bummed out. It's cathartic to sort through possibilities, celebrate Max's skills and accept the ones he's still working on. And it's fun. I once giggled out loud in the middle of a work seminar at the thought of Max as a bull fighter (don't ask) and had to start coughing to cover it up.

Have you played this mind game..or any other kind?

Monday, June 27, 2011


We are finally finished cleaning out my dad's place. It's been a heavy load, emotionally and physically. So much stuff in a two-bedroom apartment, so much discovered about him that I never knew, so much wrestling with grief and acceptance that I will never see him again.

One of the hardest parts of dealing with a parent's death is realizing that there are all these things you never thought to ask about. I unearthed hundreds of old letters and holiday cards from people I didn't know, wry letters from pals and sweet letters from old girlfriends. I asked my mom about one woman who seems to have been her predecessor. "She didn't smell good," was all she had to say (clearly not the most objective source).

My dad lived in that apartment for decades. He was there with his parents and when they died and he and my mom married, she moved in. There was a ton of memorabilia: my dad's grade-school notebooks and yearbooks, old ice-skates (two pairs), countless family photos, Life magazines from the 1920s and 1930s, his collection of hotel bar soaps (not nearly as fascinating as his collection of bread bag tags), slides and maps from his travels around the world. The life he had before me. It was particularly painful to see the photos of him as a child, looking so eager and ready to take on the world, and to read the "Bob, you're a great guy!" inscriptions in his college yearbook.

We donated dozens of bags of unworn clothes and unworn shoes to a charity and homeless shelter. We gave furniture to Goodwill. We hired someone to haul away an entire truckload of trash. We brought his stamp collection and boxes of mementos to my house.

Now that it's done, I'm relieved, but at times my heart literally hurts from sadness. My father died in March. Now his apartment is empty, and all that remains is memories and the boxes neatly piled up in my basement. And they just don't feel like enough. 

Saturday, June 25, 2011

Stuff I learned at Type-A Parent...and one unforgettable woman

I'm just back from the Type-A Parent Conference, where I spoke about getting freelance writing gigs (mostly having to do with my life as a magazine editor). I love this conference (props, Kelby!) because it's intimate, friendly, full of smart sessions and packed with fantastic people (including, above, the fabulous Washington, D.C. ladies who adopted me). A few things I took away from the conference:

• Asheville, North Carolina is an amazing place for a getaway. Lots of cool art galleries to check out, places to explore like The Biltmore Estate (America's largest home), and a bazillion fantastic restaurants. I went to Early Girl Eatery (organic Southern), Zambra! (tapas), Bouchon (French), and the Green Sage Coffehouse & Cafe twice because their coffee was that good. Our restaurant recos all came from, that's right, Aiming Low (thanks, Robin, for the calories, the super-cool handmade cards and your groundbreaking website idea).

The Charlotte airport is my new favorite—I've never seen rocking chairs in an airport. If they tried putting those in a New York one, they'd probably get stolen.

• From a super-helpful photography session by Amanda Padgett and Jenna Hatfield: Instead of always taking pictures from standing up looking down, shoot from down up—it's a really cool perspective, especially when you're photographing kids. Also, if you take pictures with a digital camera, you want to add a little contrast when you tinker with it—digital photos have a haze. And then there's the fascinating "rule of thirds" about photo composition.

I wasn't able to apply any of my newfound photography know-how to Sadie, my friend Megan's daughter. Megan writes over at Sweet Sadie Marie. Like Max, Sadie has CP. Like Max, she kicks butt. I couldn't get her to slow down for a photo—she was zooming all over the place.

• From the "No Brainer" files: If you sit next to someone at lunch and stare at your PDA the entire time, it's called anti-social media, and it's rude. "Attention is the rarest and purest form of generosity," keynote speaker Patti Digh of 37 Days said. A-men.

• "Give up the need to be right," Patti also said, something I need to do more often. A friend at the conference told me something her mother taught her: If you're in a tug of war with a person and you let go, they're the one who falls. Wise words.

• If you want to see if your blog is too slow or has other tech glitches, head on over to Is My Blog Working? I'm a little scared to find out what's wrong with this thing. Thanks to Heather Solos from Home Ec 101 for that tip, and lots more. Check out her book, Home Ec 101: Skills For Everyday Living—Cook It, Clean It, Fix It, Wash It.

• A whole bunch of great bloggers are writing books. My friend Joanne, of Pundit Mom fame, just came out with Mothers of Intention: How Women and Social Media Are Revolutionizing Politics in America. Per Joanne, "Women make up the majority of online users and utilize the Internet more effectively than men, overall." Y-E-S.

• There is all kinds of courage in this world but to me, one of the most awe-inspiring kinds comes from people who, even as they are in the throes of battling a disease, strive to prevent it from happening to others.

I had the honor of meeting Susan Niebur from Toddler Planet. Susan is an astrophysicist and a mom of two boys, ages 6 and 4. Susan has inflammatory breast cancer (IBC), a particularly aggressive form of the disease. The last time the cancer returned, and it's come back four times now, it got into her bones and is now metatastic.

Susan works, raises her children, deals with cancer and all of its crappy side effects, does whatever she can to raise awareness about IBC ("the cancer that kills without the lump"), and tries to make life better for women with it. When you have IBC, lymph nodes are removed in your arm; that can produce swelling called lymphedema. The solution: A compression sleeve. "Like a bra for your arm," Susan describes it. Insurance won't pay for the sleeves, as they are not medically necessary. (AAAAARGH, INSURANCE COMPANIES). They cost about $100 each. So Susan set out to find a way to have them donated to women who need them...and she did. Not only that, but she recently got a big-deal designer to do one up, and it's in the works.

Susan received the Bloganthropy Award at the conference, given to bloggers who use social media for social good. All of the finalists were worthy, but none more so than Susan. She received $2200 from the sponsor of the awards, P&G's GIVE Education program. In her speech, Susan mentioned the 19 other women who were there with her in spirit—the moms who write with her at Mothers With Cancer.

Susan (right) with Katherine Stone from Postpartum Progress

Please read Susan's eye-opening post about IBC, then tell your friends—you could save lives. And don't miss The Starfish, Susan's reminder about the power each of us have as individuals to make a difference in this big, crazy world. It will stay with you.

Photo of Susan & Katherine/Amy Mascott

Friday, June 24, 2011

Happiness secrets from the 1000 Awesome Things guy

I don't remember how I first found out about the 1000 Awesome Things blog, but once I did, I was hooked. On days when I feel like I could easily write 1000 Crappy Things, I head on over there for a hit of happiness. The writer, Neil Pasricha, is all about simple pleasures, the kind you don't need to buy—you just have to appreciate what's right in front of you.

This is Neil. You didn't think he'd be a sourpuss, did you?

Neil's first book, The Book of Awesome, was an international bestseller. Just out: The Book Of (Even More) Awesome. A few of my favorites: • Driving around with the windows down on late summer nights • When your fries oder has a few onion rings stashed in the mix • The smell of an old hardware store • Realizing you still remember your childhood friend's phone number • When a cop finally passes you after driving behind you for a while. One "awesome" I'm dubious about: "When you hit the point where you're comfortable farting around each other." That's because one of you is usually significantly more gassy than the other. And it's not me.

Check out this Q&A with Neil, then keep reading for copies of his book!

Hello, Neil. Congrats on your latest book. It truly is even more awesome.
"Hello Ellen! Why thank you! I really appreciate that."

So, what simple pleasure did you most enjoy today?
"Hmm, let's see! Well, I woke up an hour before my alarm clock and realized I had extra time left to sleep. And! I definitely cooked up some perfectly toasted toast for breakfast. You know, where the top is all crispy and brown, but not black, and the butter just glides up crispy and smooth, melting in all the tiny crooks and crannies, creating a delicious little bed for the jam? Mmmmm."

Excuse me while I go get some toast. OK, in the book you reveal that even as you were writing about all the awesome, life dealt you some blows—a broken marriage, a friend who committed suicide. I know that writing the blog and book kept you going. But not everyone can write. And sometimes, it's just hard to see the joy. Got any good strategies for finding the good when you're gloomy?
"That's a great point, Ellen. And while I definitely recommend everyone write their own 1000 Awesome things, maybe that's not in the cards for some people. I'd say my personal tips are to follow a three-step process: 1) Find an outlet 2) Talk about it 3) Focus on the positive. For me that outlet was 1000 Awesome Things and The Book Of Awesome, but that could just as easily be a friend, a therapist, a diary, or teacer. I think talking about it allows us to let things out and help think them through at the same time. And focusing on the positive is just as important! I found that writing about the other side of the pillow, finally peeing after holding it forever, and high-fiving babies always cheered me up."

There's just so much to be thankful for.

You must get gazillions of emails. What are a couple of your all-time favorite ones?
"Ha ha, that's a good question! Well, there was the time Trident emailed me to ask if I'd put ads on my site in exchange for a case of gum! That was pretty funny. To be honest, the ones that really do mean the most are the teachers who mail me their Sixth Grade Book of Awesome or the kids who say they get hope from The Book of Awesome when they're feeling down and out."

What are some of the most out-there suggestions people have made about "awesome" stuff?
"Well, that's sort of the beauty of it, I think! I saw a husband and wife flipping through The Book of (Even More) Awesome at a bookstore and the wife went, 'Look honey! Sneaking candy into movie theaters! That's awesome!' and the husband was like, 'That's not awesome—that's breaking the rules' And...ha, ha, I guess it's just that everyone has their own awesome things. The Book of (Even More) Awesome is a collection of what I hope most people like, but definitely not all! Some people probably hate puppy breath or when a baby falls asleep on you!"

What do you think is particularly awesome about parenthood? Some days, we need reminders!
"OK, sure! Let's see, how about:
1) Baby toes
2) When the baby's diaper isn't as bad as you were expecting
3) When your child runs to the front door when you come home from work

I hope you and all your readers have a very awesome week!"

Will do!

I have two copies of The Book Of (Even More) Awesome to give away. To enter, just leave a comment below about something that was recently awesome in your life.

This giveaway is open until June 29th at 11:59 EST; I'll randomly pick two winners, announce them here, and alert you by email. Note, you must leave your email if it is not visible on your blog because I do not possess awesome ESP.

UPDATE: The winners are Melody and TeamAidan. Awesome!

Photo of Neil/Gala Darling

Wednesday, June 22, 2011

Love this finger-painting idea (marshmallows involved)

This stunning plate, created by Max, is remarkable for three reasons:

• He painted it by himself, without any help from me.
• Note the color—NOT PURPLE!!! Except for one little splotch in the middle! He made it for an orange-loving girl in his class—Max has a crush, I think. Perhaps this is a turning point. I am a little weary of purple. And it's about time we married him off.
• It could probably sell for millions of dollars in an art gallery. I'm on it.

A new occupational therapist did a session with Max last night. You always get new tricks from different therapists, and sure enough, she had a good one. How's this: Painting with marshmallows! She poured fingerpaint onto a plate and presented Max with a bag of marshmallows.

Max was enchanted. First, he wanted to eat one. Then he grabbed one between his fingers (SCORE!), made some dots then and swooshed the paint around. The marshmallow makes the paint glide easily—I was dying to try! This was, by far, the easiest time he's had painting. He needs so much help learning to grasp things, and this was totally inspiring.

We've had some success with brushes. Alex Jumbo Chubby Beginner Paint Brushes are easy to grasp:

I found these Creatology ones at Michaels:

Alex also makes versions with thick handles:

Got any great tricks you've recently learned from your occupational therapists for inspiring kids to use their hands? Share! And any OTs reading this...spill!

Tuesday, June 21, 2011

A little way to help our kids feel really, really good

I tend to think of Max as a kid who needs help: from me and Dave, from teachers, from therapists, even from Sabrina. His hand and arm muscles are impaired by the cerebral palsy; sometimes they're stiff, sometimes they're weak, so much so that grasping a crayon takes serious effort. Max requires assistance with pretty much anything involving self-care, from getting dressed to using the bathroom, as well as stuff like going up and down stairs and getting in and out of cars. I've been so focused on helping Max that I've never given much thought to him as a helper, and how awesome that could be for inflating his confidence, until recently.

It started with an email from Max's teacher. At lunch that day, she told me, Max had helped a classmate clean up her desk, then held her hand to steady her as she went to throw out a napkin. "Children always seem to recognize when someone else could use some extra help," she wrote.

Then I found out from the school speech therapist that Max has been teaching another girl in his class how to use the Proloquo2Go speech app. Lately he is quite the helper, apparently (and a ladies' man).

This weekend, I interviewed a new occupational therapist. She asked how Max helps out around the house, and I didn't have much to say. We've been lax about giving him chores. He cleans up in the playroom after he's been in there and sometimes, he'll help make his bed. If I'm baking, he'll help mix; if I'm cooking spaghetti (like, all the time!) he helps break the strands in half. That's pretty much it. I don't expect him to do chores regularly the way I expect Sabrina to, and that's not doing Max any favors. Just the opposite, actually (special needs parent epiphany #25,379).

The OT pointed out that small things, like letting Max set the table, are good for his fine-motor skills. She also mentioned how empowering it can be, not to mention the idea of teaching him responsibility. Max may have disabilities, but there is no reason we shouldn't hold him up to certain standards. He needs that. He deserves that.

We are spending next week in a condo at the beach, a fine time to teach Max how to make fresh pasta noodles, haul out the trash and pay our bills online. OK, for real, it'll be a good chance to get him to set the table, toss stuff into laundry, and scoop chocolate ice-cream into a dish. Max loves hearing "Good job, Max!" and I'm sure he'll be pleased to help out. And to serve himself ten scoops of chocolate ice-cream.

I know pitching in will help Max feel great about his abilities. When Max can do something well, he does it repeatedly and often, one reason he loves to zoom around on this green tractor he's just about outgrown. He's mastered steering it. He's nailed pedaling it. And he just wants to keep doing it and doing it.

Like anyone, Max takes pride in stuff he's good at. I think more chores could be a great thing. For all of us. [Insert evil parental laughter here.]


Monday, June 20, 2011

Cape May, Congress Hall and relaxation, rediscovered

If there's one thing that's lacking in my life, it's genuine relaxation. It's not just a matter of finding the time. It's just that ever since I had kids, it's been hard to lose myself in the pleasure of a moment. It takes a lot for me to sink into a book, crocheting or a Netflix movie. I feel restless, like I should be doing something. I suspect I am not alone here.  

When the fabulous ladies of The Motherhood invited me to visit Congress Hall in Cape May, New Jersey, with a group of other bloggers, my RSVP was HELL YEAH (OK, I didn't say it but I thought it). I arranged for babysitting, made sure Max had a good supply of spaghetti, reminded Dave that he's the dad and he doesn't have to give in to Sabrina's every whim, and escaped. The mere act of cruising down a highway alone, without Madagascar on the DVD for five thousandth time, was a treat.  

Congress Hall dates back to 1816, when it was a boarding house called Tommy's Folly, because people thought the owner, Thomas H. Hughes, was out of his head for building a place so large. He went on to become a congressman. Voila! Congress Hall. 

My room. Mine, mine, mine. I could have happily stayed in for two days. I loved that the floors sloped, as befits a fine old hotel; the place was renovated in 1879, though the charming details remain. It's America's oldest seaside hotel. As grand as the hotel looks, the soaring columns and verandas were standard architecture for its time. 

The place sure does make it easy to chill out. Like, mandatory.

This year, Cape May was ranked one of the best beaches in the country. It's particularly beautiful, and it rarely gets that crowded. Also, the hotel's cabana boys will bring you food and drink, though I am not sure they will help build sand castles.

I roamed around town. The hotel is right near the Washington Street Mall; "mall" is a totally wrong word for the wide brick walkway lined with seaside-chic stores. 

The preferred mode of transportation. 

I have been craving a Bloody Mary for too long, and I had the best one of my life at the Rusty Nail bar/restaurant at the Beach Shack (a sister hotel of Congress Hall). This place, which Travel & Leisure considers one of the country's best beach bars, makes their own mix and it was just right—rich and not too spicy. The comfort-food menu was temptation central. I had a balanced meal: 1 part salmon, 10 parts Buttermilk Mashed Potatoes, 10 parts Strawberry Cobbler. 

The pool, where I got to sit and read a magazine from cover to cover and nobody shrieked "MOMMMMMY! WHERE ARE MY GOGGLES!!!" Nobody that I owned, anyway. Congress Hall, as beautiful as it is, is completely family friendly. 

People regularly get married on the hotel's expansive lawn. I am a sucker for weddings: Family's, friends', strangers'. 

One relaxing thing that I never do anymore: Walk around neighborhoods and check out the houses. There are loads of old Victorians in Cape May, and the streets are quiet, a stroller's paradise. 

We visited Beach Plum Farm, a 65-acre farm that supplies much of the produce served at Congress Hall's restaurant, The Blue Pig Tavern, and other Cape Resorts Group eateries.

The perennial herb garden. The farm also produces flowers, blueberries, strawberries, tomatoes, and many fantasies about quitting your job to run a farm.

Maybe the prettiest chicken coop ever—eat your heart out, Martha!

I've never once been tempted to gnaw on raw asparagus spears, but the just-picked kind are surprisingly sweet. I would eat many more veggies if I had a bigger backyard garden and no resident groundhog, although if someone built Maxsutawney Phil a little house like the one above, he'd be welcome to stay.

Our lunch setting. I know. I felt like I was in a Merchant Ivory film.

Chef Lucas Manteca, of The Ebbitt Room, and straight out of central casting. He prepared our feast. Everything tastes ten times better when you are in a Merchant Ivory film.

Mercifully, I was not forced to return to reality; I got a pedicure at The Sea Spa, a place that's just as serene as it sounds. 

My toes, so rarely available for photo shoots. 

For dinner: Exceptional food (Steak Frites!)...

...excellent conversation with Amy from Selfish Mom (who is the opposite of selfish, and I hope that doesn't ruin her rep)...

...and one wonderful dessert (that would be Strawberry Shortcake). 

Heaven, continued: Sitting on a bench on the walkway by the beach, alone with your thoughts.

And that was my fantasy two days, fully complimentary, in the most picturesque hotel and seaside town. If you're planning a visit, you can get $100 off a 2011 stay at Congress Hall, the Beach Shack, or the Virginia Hotel if you book by July 31; use the code MOMBLOG. You can also "like" the Congress Hall Facebook page to stay updated on offers and/or fuel your own fantasies.

This sort of trip happens, like, never (and certainly not without the kids) but it was the motivation I needed to figure out ways to really relax. Like taking time to sit in the swing on our front porch, away from the siren call of my computer. Or hitting the Farmer's Market alone early weekend mornings. Or mixing up a Bloody Mary once in a while. I wish I could have had one with you guys—I know you need some serious relaxation, too. Hmmm.... Can someone plan that get together? We'll call it Love That Mom, and we'll all sit around doing absolutely nothing. Meanwhile, here's the next best thing: the secret ingredients for the Bloody Mary. I asked.

Mix up tomato juice or V8 with the desired amount of vodka (or not—I happen to love Virgin Marys) with a small amount of cider vinegar, salt, Worcestershire sauce, celery salt, fresh lime and lemon juice, onion powder, garlic powder, fresh horseradish, a pinch of dried ancho chili powder and pepper, and a dash of Tabasco.

Sunday, June 19, 2011

Worrying less is easy (if someone reminds you)

It's early morning, and Max is standing outside his bedroom, at the foot of the staircase. He wants to go downstairs. I am in a towel, dripping wet from my shower.

"Honey!" I shout to Dave, who's in the kitchen. "Max wants to come down!" Our stairs are kind of steep, and he needs help navigating them.

Dave trudges up the stairs. When he gets near the top of the landing, he reaches out his arms for Max to fall into them. Eeek.

"Someday," I say, "you're not going to be able to do that. Max is going to be big, it'll be dangerous. You'll both fall backward!"

"But not today!" Dave says, scoops Max into his arms and heads downstairs.

I am the worrier; he keeps us focused on the here and now. And that's very much how we make it work.

How do you and your partner balance out the worrying?

Thursday, June 16, 2011

Why dads of kids with special needs rock

In honor of Father's Day and fairness—because it's obviously not just we moms who rock—I asked guys around the blogosphere (and my blog-less husband) to explain their awesome-ness, in their own words. This is what they had to say.

"I am not only Max's father, I am his buddy. Nobody plays with him like I do or tosses him around like I do or makes him laugh like I do."—Dave

"I do what I can to try and get by. I do the best I can under the circumstances and HOPE that I 'rock.' Although most of the time I feel I’m still a very long way from being able to claim any kind of trophy, I’ll never stop trying to be a better father, that much I’m certain of."—Ken Lilly, Blogzilly

"The thing people don't think about in regards to special needs dads is that we do what we do for our kids, and we really would and will do anything for them, but we do so in the face of a societal narrative about fathers that largely ranges from dismissive to hostile. We see Homer Simpson on TV and we know that we don't have the option of being that kind of fatherly buffoon. We go online and see literally thousands of sites and blogs geared toward special needs mothers, and we read about their "unique" struggles, struggles that we work through as well. We're called silent partners, even when we have something to say. And we do it all happily, because the rewards of parenting a child unlike any other are ours as well. We don't require a parade or a sit-down with Oprah. We have our child's love, and that's all we need."—Robert Rummel-Hudson, Fighting Monsters with Rubber Swords, author of Schuyler's Monster: A Father's Journey with His Wordless Daughter.

"I rock as a blogger because, being anonymous, I can say things that those with severely disabled kids feel, but can't say. As a father, I rock because I never had a 'normal' kid. I don't have the expectations and comparisons, first hand, that others do. When I am a voracious advocate for either of my children, I am doing no more than others would do for their normal kid. I advocate, I speak out, I demand simple competence and respect towards my children. And I rock as a single father, because I am a rock, I am an island."—Single Dad, Single Dad/Disabled Daughter

"Dads of kids with special needs rock because we accept our kids for who they are, not what we once wished they would be. We also rock because we all look exactly like George Clooney."—T. Lewis Stark, Big Daddy Autism, author of Big Daddy's Tales From the Lighter Side of Raising a Kid with Autism

"Mothers are nurturing, healing, comforting and when needed, can be a ferocious mother bear. Fathers are the rock. The source for strength and leadership. The father's role is to lead by example. To instill values, morals, determination and will without having to speak a word about them. When our children are diagnosed with a special need, that strength is greatly challenged. It's in these times that the father either falters or shows his greatest strength stands up to the challenge. When that happens, you know, without a doubt, that his child will turn out just fine. That father has taken the hardest, biggest and most important step to being the rock, source of strength and leader that the child will grow up to learn from. That's a comforting thought."—Stuart Duncan, Autism From A Father's Point of View

"Reasons why I rock as a dad:
1. I sacrifice my time by playing video games with Jackson.
2. I eagerly watch Star Wars and cartoons with my sons.
3. I don't change poopy diapers, I do the harder task: I take them to the trash can!
4. I am a sucker for the "PLEEEAAAAASSSSE Dad" expression.
5. Light saber fights and nerf gun wars are my favorite activities
6. I don't open doors of opportunity for my boys, I kick them open.
7. I will always try my hardest to provide my boys with the best quality life they can have.
8. Most importantly: I accept and LOVE my boys for who they are, not for what they can or can't do. They are my greatest accomplishments!"—Josh Bauman, Our Family of Four (in case you're wondering: he got 11 officemates to shave their heads, along with him, and his company donated $400 to the Make-A-Wish Foundation).

Wednesday, June 15, 2011

Top 10 phrases I'll never program into Max's speech app

1. "Got a light?"

2. "Those jeans make your butt look big."

3. "I'll take everything purple in this store. Charge it."

4. "Hey, babe, wanna see my Lightning McQueen underwear?"

5. "My mom can beat up your mom."

6. "I like my scotch on the rocks, thanks."

7. "Hand over all your cash and nobody gets hurt."

8. "If you think this iPad is cool, you oughta see my Rolls Royce."

9. "Book me on the next flight to Disney World, then call my mom and tell her where I am."

10. "Snooki, will you marry me?"

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