1 day ago
Friday, December 31, 2010
The Love That Max Year In Review (2010)
In January, I made peace with Max's purple obsession.
In February, Max entertained himself.
In March, on Cerebral Palsy Awareness Day, I told the world that Max is not a tragedy.
In April, I celebrated the sisterhood of the special needs child.
In May, I shared Top 20 Reasons Moms Of Kids With Special Needs Rock.
In June, Max tried the iPad and Proloquo2Go.
In July, I asked people to spare us the pity stare. Also, I saw dead birds.
In August, we were that special needs family.
In September, Max played piano and had his longest phone conversation ever.
In October, we shared our kids' special strengths.
In November, Max rhymed and wore out his Halloween car wash.
In December, Max tried so hard to tell me something, and I finally understood.
I hope 2011 is an amazing year for all of our kids and all of us, too. Happy New Year! What were the highlights of your year with your child?
Thursday, December 30, 2010
Adventures in Stowe, Vermont
The hotel had story time in the lobby our first afternoon there. Max was enchanted, Sabrina was mostly fascinated by the cookies. The food at the hotel is scrumptious; we dined at The Buttertub, a kid-friendly place where they bring in the food from Norma's, the hotel's organic-centric bistro. One night, we had a meal mostly consisting of cheese (cheese fondue for us, mac and cheese for the kids), the sort of dinner you and your arteries can only handle on vacation.
Dave and Sabrina went skiing the next morning, while Max and I roamed around and tried to stay out of trouble.
He loved the game room and Amelia, the super-nice babysitter who was there for a couple of hours in the afternoon and the evening. At one point, Max tried to pilfer all of the purple ornaments from the tree in the lobby, but I stopped him as it would have put a serious crimp in our vacation if he got arrested.
The hotel has a large heated indoor pool. There's a heated outdoor one, too, for people brave enough to take a dip (i.e., people who aren't us). I also got one the best massages I've ever had, an aromatherapy one at the spa that left me in a happy daze, smelling like flowers. I think a personal masseuse is also missing from my life.
We spent at couple of days at Stowe Mountain Lodge, too, where Dave skiied the trails and Sabrina studied hard in ski school.
Stowe Mountain is ski nirvana. There are 116 trails (that's 40 miles' worth), with the longest run at 3.7 miles. Dave mostly did blue trails; even the green ones were more advanced than any others he'd skiied. Sabrina started off school at the lowest level, Snowflake, and within three days advanced to Chipmunk, Squirrel and then Raccoon.
She was very proud of herself.
We ran around Stowe a lot during our five days there. Memorable activities:
Breakfast at the Dutch Pancake Cafe. Yes, people, this is a plate filled with a gigantic pancake. I got #24, shredded potato, onion and cheese (there are 51 varieties). The kids got chocolate chip pancakes, and Max thought the powdered sugar on top looked like snow. I'll quote Dave on our breakfast: "This is worth the trip to Vermont."
A beautiful, snowy ride courtesy of Gentle Giants Sleigh Rides & Carriage Rides. Twenty minutes long and not cold, thanks to the heavy robes they put on your lap.
Yet another thing missing from my life: a horse-drawn carriage.
A chocolate-making demo at Laughing Moon Chocolates. Note Sabrina in the background stuffing her face. These sweets are decadently good, with creative varieties including Alchemist Vanilla Beer Truffle, Chipotle and Cinnamon Truffle and Tropical Turtles (that's Brittany dipping them above).
A walk around town.
A walk around town.
Lunch at Pie In The Sky. The herbed crust is delicious enough to eat on its own. We couldn't decide what to get (there are 43 toppings to choose from and a bunch of specialty pies), so we ended up with half pepperoni and half Tuscano (chicken, roasted zucchini, summer squash, broccoli and red onions brushed with roasted garlic herb oil and topped with mozzarella and smoked gouda, and surely if you aren't yet hungry, you are now). We also had a decadent hummus and spinach dip, and a tomato bisque. The owners, Skip and Susan, could not be any nicer. We were there with Max while Sabrina was in ski school, and they let him go behind the scenes.
Here's Max, loading wood into the oven. I hope his pizza-making fascination continues at home, because it would be so nice if he could whip them up on the weekends for us, though we currently lack the wood-burning pizza oven.
Max paints a motorcycle purple at You-Paint-It Pottery.
Checking out apples being pressed into cider at Cold Hollow Cider Mill. Each batch is made with 2500 pounds of apples (Macintosh) and yields 250 gallons of cider.
We had a lovely babysitter, Liz, who I found through a Twitter friend (so if any of you ever need a babysitter in the Stowe area, let me know, because Liz rocks). One night, Dave and I went out to Michael's On The Hill and had one of our most memorable meals ever.
The restaurant is in an 1820s farmhouse. We sat on the porch (romantic!) and continuously sighed over how exquisite everything was. I had the watercress salad with cloth-bound cheddar, spiced walnuts and quince vinaigrette; the pasture-raised beef tenderloin with truffle butter...
...and the passion fruit tart with ginger crust and Tahitian vanilla meringue. Dave's dessert was even more insane—the El Rey chocolate gateau with molten peanut butter and concord grape sauce. (Are you nibbling on your computer screen by this point? I'm about to.) There was an anise sorbet palate cleanser before the main course, and itty bitty pickled vegetables that came with Dave's country pate that I hogged. I'm emailing one of the owners to find out how to make them. Or perhaps I can get Max to do it.
Amazingly enough, we all still managed to fit in the car on the way home. Max literally sobbed because he didn't want to leave.
I knew exactly how he felt.
Wednesday, December 29, 2010
Fun, redefined
Other than the car drama, our trip to Stowe was amazing. I got a lot of alone time with Max because Dave hit the slopes, Sabrina begged to go to ski school three days in a row, Max bailed on the adaptive skiing and me and my partially-torn ACL decided to not ski. So Max and I perfected our skills at being ski lodge bunnies and I must say, we were exceptionally good at it. Like, gold-medal good.
At first, I was bummed that Max wasn't into the adaptive skiing. He kinda-sorta liked the lesson he took last year through Vermont Adaptive Skiing when we were at Sugarbush, but this year, he wasn't having any of it. He wailed when we left him with the instructor at Stowe Mountain Resort. Cynthia was lovely; she'd been trained in working with disabled people. "Give him time! Go get yourselves a cup of coffee," she told us. So Dave and I reluctantly trudged away. A half hour later, a ski school person came to get us. "He's not into it," she said. We found a sniveling Max with Cynthia in the locker area. We took him to get hot chocolate, and then he was back to his usually happy self.
The truth was, having hot chocolate with us was Max's idea of fun. So was exploring the two hotels we stayed at, hitting the game room, eating spaghetti (and more spaghetti)...
...checking out purple snowboards...
...observing a hotel piano player...
...running back and forth across a covered bridge, and wearing the scarf 24/7 that he picked up on his purple shopping spree. We did some other activities he totally got a kick out of, more on them tomorrow; it's amazing how zonked I am from doing nothing but sitting in a car all day long.
When we headed to Vermont, I couldn't wait for Max to try adaptive skiing again. I thought he might really enjoy it this year, and I also wanted him to experience the same thrills kids have on the slopes. Then again, I've realized, lots of so-called typical kids don't particularly like to ski, and neither does Max—for now, anyway. "Adaptive" activities are an opportunity for kids with disabilities, not a requisite for trying to experience life like other kids do.
Max's idea of fun is Max's idea of fun.
Tuesday, December 28, 2010
If it's any day, it must be spaghetti day
Max is so full of spaghetti right now, it's a wonder his hair hasn't turned into pasta strands. He's had it for lunch and dinner every single day of our vacation. He'd have it for breakfast, too, if we let him. Not a bad food, in the scheme of things, though I wish more restaurants had the wheat kind. In Max's book, any sort of pasta qualifies as spaghetti—rigatoni, penne, macaroni, whatever, so we can always find it on the menu unless we're at a Wendy's or something, in which case he's forced to have a burger. Tragic, I know.
Max's word for spaghetti is kinda hard to understand ("eh-eh-eeeee") but I always make him tell the waiter what he wants, and then I translate. "Add butter," I'll add in a whisper, because we're still trying to fatten skinny Max up but he's a purist—he doesn't want any butter. Not even one lousy meatball. Just spaghetti, thankyouverymuch, with a side of marinara sauce. Eaten with a spoon. Stirred, not shaken.
One of these days, I need to dye some pasta purple with food coloring. It would be worth it just to hear his squeals. If any of you happen to know where to get some online, do tell.
Which food is your kid loving right now?
Photo/fotoparatas
Monday, December 27, 2010
The question that still hurts
Greetings from snowy Vermont! We're "stuck" here in Stowe because of a major snowstorm at home. I like me a good blizzard, but it is exceptionally wonderful to be forced to extend your vacation. We're all happy, especially Max, who loves to stay in a "ih oh-hell" (that's "big hotel"). This trip's been filled with all kind of treats like ginormous Dutch pancakes, a dip in a heated outdoor pool and a sleigh ride (coming up tomorrow).
Vacation is mostly a great escape for me. Our days are free of routines, there's someone picking up very plush towels off the floor and making the beds, we eat out for our meals, I'm not playing Julie the Cruise Director of Max's therapies, I can sit in a hotel lobby and listen to a piano player (as I am now). But vacation can be an unwanted reality check, too; away from all our friends and family, it becomes very clear how some people view Max. Especially kids. More than once here, a child has looked at Max and asked, "Is he a baby?" I'll usually say something like, "He's eight! He just doesn't talk like you do." Sometimes I'll add, "He loves chocolate ice-cream! Do you?" which usually works as an ice-breaker.
I've developed a thicker skin over the years about this stuff. Yet the comments from children continue to prick me. I wish they didn't, but they do.
It's strange: Out of everything I've gotten past about Max's stroke and the cerebral palsy, this is one of the few things that still pains me. Or, well, maybe it's not so strange that it should bother me when another child can't immediately see my boy for who he is: an awesome kid.
iphoto/Antonio
Vacation is mostly a great escape for me. Our days are free of routines, there's someone picking up very plush towels off the floor and making the beds, we eat out for our meals, I'm not playing Julie the Cruise Director of Max's therapies, I can sit in a hotel lobby and listen to a piano player (as I am now). But vacation can be an unwanted reality check, too; away from all our friends and family, it becomes very clear how some people view Max. Especially kids. More than once here, a child has looked at Max and asked, "Is he a baby?" I'll usually say something like, "He's eight! He just doesn't talk like you do." Sometimes I'll add, "He loves chocolate ice-cream! Do you?" which usually works as an ice-breaker.
I've developed a thicker skin over the years about this stuff. Yet the comments from children continue to prick me. I wish they didn't, but they do.
It's strange: Out of everything I've gotten past about Max's stroke and the cerebral palsy, this is one of the few things that still pains me. Or, well, maybe it's not so strange that it should bother me when another child can't immediately see my boy for who he is: an awesome kid.
iphoto/Antonio
Saturday, December 25, 2010
What's your favorite winter sight?
Hello, all. Haaaaaaapy holidays! We're very merry, especially because we're in Vermont for the weekend. Dave's skiing, Sabrina's in ski school, Max is hanging at the hotel's kiddie program (he ordered me to leave him) and I am vegging out. Some of you may recall my adventure with skiing last year, and my very svelte left knee. I am too chicken to hit the slopes again this year, even though my ACL is only partially torn. "If you get into another accident, you could really mess it up," someone told me the other day, striking the fear of God into me. Can you spell w-u-s-s?
It's a long ride here from where we live, a good seven hours, but I was the happiest passenger during the last couple of hours as we drove through Vermont. It's the icicles, frozen mid-cascade on the cliffs on the side of the road; they utterly and completely mesmerize me. I can never get enough of them.
"Will you please look at the beautiful icicles? Please?" I said, begging the kids to tear their eyes away from the DVD.
"ICE!" said Max.
"Wooooow," said Sabrina.
And then they went right back to the magical sight of Thomas the Tank.
Icicles in the mountains of Vermont are the prettiest of all, but even ice hanging off the side of our garage is beautiful to me, ice queen that I am.
What winter sight blisses you out?
istock/natureniche
It's a long ride here from where we live, a good seven hours, but I was the happiest passenger during the last couple of hours as we drove through Vermont. It's the icicles, frozen mid-cascade on the cliffs on the side of the road; they utterly and completely mesmerize me. I can never get enough of them.
"Will you please look at the beautiful icicles? Please?" I said, begging the kids to tear their eyes away from the DVD.
"ICE!" said Max.
"Wooooow," said Sabrina.
And then they went right back to the magical sight of Thomas the Tank.
Icicles in the mountains of Vermont are the prettiest of all, but even ice hanging off the side of our garage is beautiful to me, ice queen that I am.
What winter sight blisses you out?
istock/natureniche
Thursday, December 23, 2010
This is how I do it
"How do you do it?" people ask.
Which always gives me pause
because while I often feel
like I am barely keeping up with life
and there are days
when even taking a deep breath
feels like a luxury,
there is no question:
I do whatever I can
for my child—
just like any mom.
I have no exceptional mom abilities,
no particular mom tricks.
Well, actually, my trick is that
I try to feel content
with "whatever I can."
Even if I cannot do
every single therapy exercise
or every thing the teacher suggests
or look into every educational toy
or upload new photos onto the iPad every weekend
or etc. etc. etc.
Even if I ignore things
like the drooling that isn't getting better
Which always gives me pause
because while I often feel
like I am barely keeping up with life
and there are days
when even taking a deep breath
feels like a luxury,
there is no question:
I do whatever I can
for my child—
just like any mom.
I have no exceptional mom abilities,
no particular mom tricks.
Well, actually, my trick is that
I try to feel content
with "whatever I can."
Even if I cannot do
every single therapy exercise
or every thing the teacher suggests
or look into every educational toy
or upload new photos onto the iPad every weekend
or etc. etc. etc.
Even if I ignore things
like the drooling that isn't getting better
or the seizures that are still a possibility.
Even if there are weekends
when we watch entirely too much TV
or there are times
when I really
just want to be alone.
This is how I do it: I sometimes don't do it.
And I've learned to be OK with that.
Even if there are weekends
when we watch entirely too much TV
or there are times
when I really
just want to be alone.
This is how I do it: I sometimes don't do it.
And I've learned to be OK with that.
Wednesday, December 22, 2010
Shopping with Max
• One purple candle: check.
• One container Smucker's Grape Jelly: check.
• One walking cane with lots of purple (small): check.
• One walking cane with lots of purple (large): check.
• One Crayola purple toothbrush: check.
• One purple pashmina scarf: check.
• One purple-tubed CVS Color Protect Moisturizing Conditioner: check.
• One pack purple birthday candles: check.
• One stand-off at the checkout counter about what Max could and couldn't get: CHECK.
At least we didn't come home with the canes.
And now, a public service announcement: I am getting the heck off of Blogspot and moving to www.lovethatmax.com, so you can start visiting there. Bookmark it, change your feed subscription, alert the authorities, etc.
Labels:
The purple obsession lives on
Tuesday, December 21, 2010
The stuff I don't take for granted
In the car with Dave over the weekend, I was pecking away on my BlackBerry, e-mailing a friend. I'm not sure why but it suddenly occurred to me how itty bitty the keys are, and how amazing it is that people have the ability to type with them.
Until Max was born, I never once appreciated the fact that my fingers do what fingers are supposed to do. But now that I've seen what sorts of fine-motor challenges a human being can have—the stroke impaired Max's hands, especially his right one—at times I am awestruck that my fingers are fully functional.
These thoughts randomly pop up. Like I'll be crocheting the granny-square blanket I've been making for Sabrina that may or may not be finished by the time she's in college (she's five) and I'll think about the intricacy of the movements required. Or I'll be twirling some spaghetti and marvel at the maneuvering it takes to do so. Or I'll watch Sabrina cutting paper with scissors and feel so grateful she can do that.
Max's hands are less stiff than they used to be, but opening them fully to grasp a toy or coordinating his fingers to hold the phone do not come easy to him. We need to work harder at adapting things around the house; I'm sure there's some sort of handle to attach to the phone that would better help him grasp it.
Tonight, both kids were in the bathroom brushing their hair in front of the big mirror. Max managed to hold the brush, but then Sabrina said in that sweet sing-songy voice she sometimes uses around him, "Maaaa-aaaax, do you want me to brush your hair for you?" He nodded, happily. And she brushed his hair then said, "Now it feels so soft!" And I totally melted.
If you don't have a kid with disabilities, chances are you've never once thought about the wonder of fingers that flex, legs that walk, mouths that talk. But if you do have a kid with disabilities, I'm betting sometimes you think about this stuff, too.
istock/SunForRise
Monday, December 20, 2010
How did pregnancy treat you?
Michelle and Jake in Brookville, New York; Baby Megan born 8 lb., 1 oz.
There's a new book out, Ripe, that consists entirely of nude portraits of pregnant women. The author, Alex Garbarino, is a friend of a friend and she sent me a copy. I paged through it, enjoying the beautiful bodies and kinda-sorta wishing I were pregnant again.
Deborah in New York City; Baby Remy born 6 lb., 2 oz.
Max was my first pregnancy, and it was a great one. I think in my my I've glorified it even more because what happened after he was born was such a hell. My pregnancy seems like pure bliss in comparison. Innocent, even, if you could call a pregnancy that.
I had good energy. I was in awe of my growing belly. I loved feeling Max kicking. Sometimes I'd just lie on the bed, watch the ripples and try to figure out which part of his was moving. My Sabrina pregnancy was easy and uneventful, too, though I got indigestion at the end (which she still gives me—girls!).
How did pregnancy treat you?
Saturday, December 18, 2010
Holiday giveaway: Win a $50 Staples Gift Card
I am a gadget dork. At my last job, one of the assistants had a label maker that I coveted. I am not sure why, because some days I barely have time for a bathroom break, let alone labeling stuff, but still. I thought it would be cool to own a label maker. Like, if I could label stuff, I'd maybe lead a more sane existence. It's sad that my fantasy life has come to this.
When I saw this Minimate Cross-Cut Shredder ($49.99) at a Staples holiday party thrown by Audrey from Mom Generations, I lusted after it. And, yes, Max would approve of the color. I know I'm supposed to be pulverizing bills and financial papers so identity crooks can't pluck them out of the garbage, so it would be cool for that, though I can't think of any other evidence I have to destroy except the ridiculous stuff I share here sometimes, and I don't think the shredder works on blogs. Though it's supposed to be tough enough to mince credit cards and CDs, so if that Raffi or Barney music is driving you up a wall, this could come in handy.
There were other cool holiday gifts on display:
The Olympus Stylus Tough
The Flip Video UltraHD Digital Camcorder (I WON one, and also got a Staples gift card).
I also loved the Omnitech Bling Ear Buds you can get in Staples stores for $9.99. Hello, stocking stuffer!
Got gadget lust, too? I have two $50 Staples gift gards to give away. To enter, just leave a note below about what sort of gift you're secretly hoping to get from your spouse. Then just leave this post CONVENIENTLY open on your computer and maybe he or she will notice? Maybe leave your computer open on their pillow at night? Just trying to be helpful, as always.
• Follow LoveThatMax on Twitter
• Like LoveThatMax on Facebook
• Tweet about this giveaway: Win a $50 Staples Gift Card from @LoveThatMax, ends 12/28, http://tinyurl.com/25bnfey
This giveaway is open to U.S. residents only until12/28 at 11:59 p.m. EST. I'll randomly pick two winners, alert you by email and announce it here. Good luck, fellow gadget coveters!
Update: The winners are Stephanie and Julie. Happy Staples shopping, ladies!
Friday, December 17, 2010
Holiday giveaway: Win a Hallmark Recordable Storybook
Basically, you record yourself reading the words on each page. Or you can record your kid talking. Or your Aunt Tillie. The instructions did not say whether recording your dog, cat or parakeet would work, and since we have none of those, I can't say. What I can tell you is that it's idiot-proof: You press a button, and the prompts tell you what to do. Every time you flip the page, the recording automatically starts. I enjoyed recording it, and even more, I enjoyed the look on Max's face when he heard my voice.
We also got I Love You Grandma, which I'm going to have the kids record and give to my mom. The books are geared toward kids ages 18 months and up, but both Max and Sabrina got a kick out of them. They're sold at Hallmark Gold Crown Stores.
Get psyched: I have two Hallmark Recordable Storybooks to give away, each worth $29.95. You can take your pick of any of the 15 books online. To enter, just check out the books and leave a comment below about which one your child would like.
Bonus entries:
• Follow LoveThatMax on Twitter
• Like LoveThatMax on Facebook
• Tweet about this giveaway: Win a $30 Hallmark Recordable Storybook from @LoveThatMax, ends 12/22, http://tinyurl.com/2fj9n2y
This giveaway is open to U.S. residents only and ends 12/22 at 11:59 p.m. EST. I'll randomly pick the winners, alert you by email and announce it here.
Bon chance! Word, if you buy one regularly-priced Recordable Storybook at Hallmark through 12/24, you can get an additional holiday one for $19.95. Perhaps your iguana would like to record one?
Update: The winners are Tina Reynolds and lezanac. I hope you, your kids and/or your ferret enjoy!
He tries so hard to tell me things
I'm hanging with Max in his room at bedtime. We've just finished reading a Thomas the Tank book, and now wants to flip through a mini album of photos from our last trip to Disney World. It's been months since we looked at the book, and he's excited all over again.
We get to this shot of the castle.
Max points to the turrets, puts one hand to his ear and makes a whooshing sound.
Hmmm. "Oh, Max, do you think the top parts of the castle look like rocket ships?"
"Noooooooo," says Max.
Again, he puts his hand to his ear and makes a whooshing sound.
"Are you saying you want to fly to Disney World?" I ask.
"Noooooooo," says Max.
Lately, Max is trying so hard to articulate words and show me things with his own kinds of signs. And there are times when I don't know what he's trying to say. I could run downstairs, get the iPad, see if it can speak the word for him. Except I don't always want a machine in between us. Obviously, the iPad is a breakthrough device for a child with speech challenges, but tonight Max has something he's eager to tell me and I want to encourage him to communicate on his own. I'd like to give him confidence that he himself has the ability to express words, thoughts, feelings. And that his mom can understand him.
Max whooshes again. Then it hits me. "Are you saying there are fireworks at the castle?" I ask.
"YESSSSSSSS!" Max says, smiling. And I give him a high-five, and we both laugh.
Victory.
Wednesday, December 15, 2010
Welcome To Holland: Get to know the author!
I don't remember exactly when I first read Welcome To Holland, Emily Perl Kingsley's essay about the journey of raising a kid with special needs. I do know Max was pretty young, and that I was deeply moved by it. Welcome To Holland gets passed around a lot online; I'm sure you've seen it at some point. What Emily wrote:
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this...
When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans...the Coliseum, the Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It’s all very exciting. After several months of eager anticipation, the day finally arrives. You pack your bags and off you go.
Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland!” “Holland?” you say. “What do you mean, Holland? I signed up for Italy. I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It’s just a different place.
So, you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower paced than Italy, less flashy than Italy.
But after you’ve been there for a while and you catch your breath, you look around. You begin to notice that Holland has windmills. Holland has tulips. And Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that experience will never, ever, ever, go away. The loss of that dream is a very significant loss.
But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.
When Max was around three, a newspaper ran an article about Emily and her son, Jason, who has Down Syndrome. On impulse I picked up the phone, tracked down her work number and got her on the line. Stalker-like, yeah, but she was kind enough to spend a few minutes chatting and encouraging me to have hope. She even gave me her email.
A friend of mine recently heard Emily speak at an event and gushed about her. So I emailed Emily to tell her that, and ask if she'd be willing to answer some questions. She is!
So, what would you like to ask the author of Welcome To Holland? Leave your q below; I'll gather them, send them off to her and run her responses here.
Photo/Oldebekn
When Max was around three, a newspaper ran an article about Emily and her son, Jason, who has Down Syndrome. On impulse I picked up the phone, tracked down her work number and got her on the line. Stalker-like, yeah, but she was kind enough to spend a few minutes chatting and encouraging me to have hope. She even gave me her email.
A friend of mine recently heard Emily speak at an event and gushed about her. So I emailed Emily to tell her that, and ask if she'd be willing to answer some questions. She is!
So, what would you like to ask the author of Welcome To Holland? Leave your q below; I'll gather them, send them off to her and run her responses here.
Photo/Oldebekn
Giveaways alert!
The wonderful Marcela over at Praying for Nathan, mom to gorgeous Nathan (who I think looks like Max), is giving away a brand new XBox 360 4G Console with Kinect. There's a wonderful reason behind it: She's hoping to gather ideas for his Dynavox. It works in an amazing way; the computer reads his retina, so when he looks at an image, it says whatever it's been pre-programmed to say. You have to see the smile on Nathan's face in the video. Please, go enter and share ideas with Marcella.
Also, tomorrow's the last day here to win a YBike and get your kid some wheels! Because otherwise, he'll be asking to borrow the car.
And I wonder why he never wants to help
Here's our holiday card. I was all proud of myself because I ordered them from Shutterfly on Thanksgiving weekend, when they had some sort of great deal. Of course, since then they've sat on our living room bookshelf. Every night I'd think, "I'm sending them out!" And then, I didn't because there were approximately 73 other things I'd rather be doing. I kept wishing I had a wife who would handle it; Dave is never into pitching in with tasks like this. Tonight I realized why.
For the first time ever, I roped him into sticking on the stamps and mailing labels. He was also in charge of sealing envelopes with this handy-dandy Bottle Moistener I pull out once a year. I'd do the addressing.
I glanced over after he'd done a few. "Honey, the mailing label is crooked," I said.
"OK," he said.
I looked over again a little while later. "Sweetie, now the stamps and the mailing labels are crooked," I pointed out.
"Does it really matter?" said Dave, reasonably.
"Well, as long as you're doing it, you might as well put it on straight," I said.
He just stared at me.
I looked over again in a bit.
Crooked.
I didn't say a peep.
Sometimes, I give wives a bad name.
Tuesday, December 14, 2010
Appreciating the baby-ness
I've been a little melancholy lately, bear with me. It started with Max's birthday; I'm having trouble accepting that he is eight. In some ways, his birth seems like a lifetime ago. And yet, certain aspects of that time in my life are extremely vivid, almost visceral. I can picture what it was like to hold him in the middle of the night in the hours after he was born, the night before we first learned he'd had a stroke and I thought sleep deprivation would be my biggest challenge. I can still smell the hospital smell. I can still see the faces of the doctors. I can still hear the monitors going off in the NICU. The one thing that I can't picture is Max lying in the incubator; I've pretty much blocked that out.
I look at the kids' faces a lot lately, searching for vestiges of baby-ness. Max still has it in him. Some of that has to do with the speech challenges, which can make him seem younger than his years, but it's also in his mushable cheeks and sweet smile. Sabrina has got pudgy cheeks and hands and a little belly. They both have such kissy lips. Is it weird to make out with your kids? I do. I kiss and kiss and kiss them.
I spent a lot of Max's early childhood aching for him to mature. I'd wonder endlessly about what he'd be like when he got older. He's made amazing progress, but now I don't want the little kid in him to disappear; I haven't had my fill. I am making up for lost time, those years when I didn't appreciate his deliciousness as much as I could. And could it be I'm a little uneasy? Yes, I think I am. Are his challenges going to be more evident as he gets older?
If your kids are little, I'm begging you: Savor them. Nibble their hands, nuzzle their cheeks. I know you're worried about what the future holds for them. But try so hard to just appreciate them for what they are: beautiful, yummy kids.
Like any children, they are only young once.
Monday, December 13, 2010
Scenes from my fantasy life
Breaking news: This weekend, I watched an entire half-hour infomercial for a Time/Life collection of CDs from the '70s. I grew up with that music—my mom always had the radio on in our house—and I knew every single song they played.
I had the rare chance to zone out because I was away at an event in San Diego. Nissan debuted their fourth-generation minivan, the Quest, and through my work with Redbook I got invited to speak about work-life balance at a lunch for bloggers. (They sprung for the plane ride, my hotel room and a massage, which was nice, as another part of my fantasy life involves being a jet-setter or a lady who lunches.) I thought the Quest was impressive: I liked the wood-paneled dashboard, the rear seats you could easily pull up and down, the low-ish step for getting into the back, doors and a trunk that opened with a push of the button on the handle, a Blind Spot Warning System in which a light on the oversize side-view mirrors flashes if a car is passing (so you won't turn and hit it) and actually beeps if you veered toward it (I tried, just to see what would happen). Here 'tis:
I forget how bad the entire state of California is for my hair until I see pictures like this. Anyhoo, we got into a good discussion, we ate good food, we had our own hotel rooms (heaven). So there I was, lying in bed at 11:30 p.m. propped up by three pillows because there was no Dave to hog them, and I got sucked into the Singers & Songwriters infomercial. (Word, my friend Sheila Weller wrote a book about Carly Simon, Carole King and Joni Mitchell, Girls Like Us, it's an excellent read).
Then I had a five-hour plane ride home and the entire time, I was singing the songs. I mean, not like I was doing plane karaoke or anything, but the elderly guy next to me slept, and the engines were loud, so I could sing softly: "I'm leaving on a jet plane... Sunshine on my shoulders... Sarah smile... Bye, bye Miss American Pie... In my mind I've gone to Carolina... You're so vain... If you leave me now...." As I sat there I thought, I want to learn to play guitar. And get a gig singing in the pub in town.
Dave, Max and Sabrina were at the airport waiting for me and I was ecstatic to see them. Max was wailing, because he wanted to go somewhere on a plane and meanie parents that we are, we wouldn't let him. At home I bathed the kids, picked up the entire house because nobody else has that talent, caught up on mail and chores and generally got back to reality, where there isn't spare time to take guitar lessons or, for that matter, watch infomercials, although there is plenty of opportunity to drive a minivan.
But, man, I'd really like to learn how to play guitar. And sing in the pub in town.
OK, if you had the time, what would you learn how to do?
I had the rare chance to zone out because I was away at an event in San Diego. Nissan debuted their fourth-generation minivan, the Quest, and through my work with Redbook I got invited to speak about work-life balance at a lunch for bloggers. (They sprung for the plane ride, my hotel room and a massage, which was nice, as another part of my fantasy life involves being a jet-setter or a lady who lunches.) I thought the Quest was impressive: I liked the wood-paneled dashboard, the rear seats you could easily pull up and down, the low-ish step for getting into the back, doors and a trunk that opened with a push of the button on the handle, a Blind Spot Warning System in which a light on the oversize side-view mirrors flashes if a car is passing (so you won't turn and hit it) and actually beeps if you veered toward it (I tried, just to see what would happen). Here 'tis:
I got to chat and laugh with a wonderful bunch of women: Ciaran from Momfluential, Lori from A Cowboy's Wife, Kim from Traveling Mom, Elizabeth from Traded My BMW for a Minivan, Jamie from Blonde Mom Blog, Romy from Romy Raves, Theresa from Rock On Mommies, Amy from BabyCenter, Caryn from Rockin Mama, Sondra from Happy Healthy Hip Parenting, Sugar from Sugar in the Raw and Courtney from My DFW Mommy.
I forget how bad the entire state of California is for my hair until I see pictures like this. Anyhoo, we got into a good discussion, we ate good food, we had our own hotel rooms (heaven). So there I was, lying in bed at 11:30 p.m. propped up by three pillows because there was no Dave to hog them, and I got sucked into the Singers & Songwriters infomercial. (Word, my friend Sheila Weller wrote a book about Carly Simon, Carole King and Joni Mitchell, Girls Like Us, it's an excellent read).
Then I had a five-hour plane ride home and the entire time, I was singing the songs. I mean, not like I was doing plane karaoke or anything, but the elderly guy next to me slept, and the engines were loud, so I could sing softly: "I'm leaving on a jet plane... Sunshine on my shoulders... Sarah smile... Bye, bye Miss American Pie... In my mind I've gone to Carolina... You're so vain... If you leave me now...." As I sat there I thought, I want to learn to play guitar. And get a gig singing in the pub in town.
Dave, Max and Sabrina were at the airport waiting for me and I was ecstatic to see them. Max was wailing, because he wanted to go somewhere on a plane and meanie parents that we are, we wouldn't let him. At home I bathed the kids, picked up the entire house because nobody else has that talent, caught up on mail and chores and generally got back to reality, where there isn't spare time to take guitar lessons or, for that matter, watch infomercials, although there is plenty of opportunity to drive a minivan.
But, man, I'd really like to learn how to play guitar. And sing in the pub in town.
OK, if you had the time, what would you learn how to do?
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