Saturday, January 31, 2009

Raising awareness about our kids

Since Max was a baby, I've been very open about what happened to him. Sometimes, it unnerves people how easily I can say, "He had a stroke." Marcela over at Pray For Nathan has come up with a card that she is thinking of handing out to people about her son. I think it's a great idea.

I've been a member of The Pediatric Stroke Network since the second week of Max's life. For the last few years, some member in the group has put together a quilt with faces of children who have had strokes and their birthdates. It circulates around the country from parent to parent, in hopes of raising awareness about pediatric stroke (it occurs in about 1 in 4000 births, so it's not as uncommon as you may think). We're in possession of the quilt now; that's Max looking at his picture of himself on it. Our local newspaper did a story about the quilt and Max, and I was really happy to do my bit to help.

I'm awed by the handful of moms in the network who have gotten tattoos to raise awareness. Jessica, mom to adorable Brendon, got a tattoo on her right foot, the same side her son's stroke affected him. I was was very touched by this video of Jessica getting her tattoo.

I will probably not get a tattoo in this lifetime, but I think it is really important to educate and inform other people about our kids. Agree?

Thursday, January 29, 2009

Better than Prozac: photos of the kids


Recently, I read an article in People about an amazing non-profit organization called Flashes of Hope. Started by a former model, it's dedicated to taking pictures of kids who are fighting life-threatening illnesses; professional photographers volunteer their time. Check out the photos—both beautiful and inspiring—and pass along the info to families who could use it.

If you couldn't already tell from reading this blog, I love taking pictures of the kids. I used to bring them to The Picture People, though Max didn't always do so well in a strange location. So every fall, we'd hire a professional photographer to come to the house; this year our neighbor, Jon, did the job. (He also took the photos below of Max at two.) When Max was a baby, looking at pictures of him was the one thing that could always lift me out of the how-am-I-going-to-handle-all-this fog I was in.

For the first four months of his life, Max wasn't able to focus his eyes on me. His brain was still healing from the stroke, and vision was slow to come. At the end of the day, our babysitter would put him in the stroller and meet me halfway when I walked home from the train. I can vividly recall stooping down on the sidewalk in front of the stroller, saying "Max! Max! Max!" and yearning so hard for him to look back and recognize me.

Eventually, he did.

These are some of my favorite professional shots of the kids, through the years.









Wednesday, January 28, 2009

Sablog: a "blog" by Sabrina, age 4 (today!)

On the day we took her home from the hospital

So, what would you like to tell everyone?
Sabrina: "I saw the snow today. I saw it outside. And Max was watching it too. And then, um, and then, um, it got nighttime, and then I took a bath and then, um, I put on my pajamas. And that's it!"
And what day is today?
Sabrina: "My birthday!"
And how old are you?
Sabrina: "I'm 4."
And what were you like when you were a baby?
Sabrina: "I was in your belly. Then I came out and drank milk. And I liked my hacibier." [Translation: pacifier]
And what was the favorite thing you got for your birthday?
Sabrina: "A present."
Ok. And which one did you like best?
Sabrina: "Um, um, the Cinderella one. The doll."
So you like princesses?
Sabrina: "Yeah."
How much?
Sabrina: "Lots."
Does Max like princesses?
Sabrina: "No."
Why not?
Sabrina: "Because he's a boy."
Boys can like princesses!
Sabrina: "No, they can't, because they're a boy."
What does Max like?
Sabrina: "Cars. Race cars."
OK, back to you. What's your favorite color?
Sabrina: "Pink. I love pink."
What's your favorite food?
Sabrina: "Um, um, macaroni and cheese."
Are you going to share your birthday presents with Max?
Sabrina: "They're only for me. Because they have some pink on it. But he can share sometimes with me if he WANTS to."
And does he want to?
Sabrina: "No thanks. That's all the questions. I want to stop doing this."
OK. Happy birthday, my little love.

Eight babies born at the same time? OMG!

You heard the news about the California woman who had eight babies, right? The babies are only the second set of octuplets on record to survive. Amazingly, they are all stable; doctors will be keeping a close eye on them for the next two months.

The most mind-boggling thing to me is that the mother is planning to breastfeed. I don't know how things went for you, but I had a hard time with it. Torturous, even. I was determined to give Max anything and everything I could, but getting him to latch on was tricky; a lot of that was due to muscle/sucking issues he had from the stroke. Feeding sessions often took an hour or more. Dave would leave for work and I'd be sitting on the couch with Max, trying to nurse him, with HGTV on. Dave would come home from work and I'd be sitting in the same place on the couch, trying to nurse Max, with HGTV on. It was the postpartum equivalent of Groundhog's Day.

Eventually I realized I was a very good pumper, and ended up doing that more often. I kept up the breastfeeding/pumpage till Max was 10 months old. With Sabrina, I lasted for six months or so. I had no problem giving the kids formula, I think it's made with pretty good stuff these days.

What have your breastfeeding experiences been, if any? And do you think it's insane to try breastfeeding eight babies?!

Tuesday, January 27, 2009

Let's all help a girl with big dreams

A beautiful girl at Max's school, Liliana, entered a contest at the modeling school she attends. The winner gets to walk the catwalk in Vegas—and as she says, "I would be the first person in a wheelchair to make it through!" Check out her YouTube video, the person with the most clicks wins.

Oh, and belated thanks to Rob over at Fighting Monsters With Rubber Swords for the guest-post opportunity. I am in awe of his blog, and was proud to be on it. This is his amazing little girl, Schuyler.

This kid's got imagination

Here's what Max looked like when I walked in the door from work last night. I couldn't help it, I laughed and laughed, he was so adorably fab in his camo pj's, pirate's hat and shades. He wanted to sleep with the sunglasses on but I refused (and I will refrain from making a joke about that so-called song, "I Wear My Sunglasses At Night.")

Max has gotten very imaginative lately, something that's always sorta-kinda been there but has really kicked in. He walks around with a toy phone and pretends to take pictures of things. He swoops his plastic plane around and "flies" it. He loves to play monster and catch me, Dave or Sabrina. He bends over, swings an arm and makes like an elephant. He hasn't yet gotten the hang of the "hide" part of Hide and Seek (he stands in the middle of the living room and puts an arm over his eyes) but, hey, maybe he's playing the existential version of the game, what do I know.

What I can say is that imagination like this is a good sign that all sorts of wheels are spinning in his brain. Go to it, my sweet soldier-pirate-hipster boy.

Monday, January 26, 2009

Monday Morning Confessional: big, bad fears

A scene from Sabrina's wild and crazy fourth birthday party

Hello, all. Hope you had a good weekend. My mom (aka Babba) came over, and Aunt Judy too. And Max wore jeans. And at Sabrina's party, she got to dress up as a princess, and we had Carvel ice-cream cake with chocolate crunchies, the best ice-cream cake in the history of ice-cream cakes. So, in a nutshell, both kids had the best weekend ever. And when they have a happy weekend, we have a happy weekend. It's contagious.

Max has been incredibly chatty lately. He lets out strings of sounds that seem like sentences (in Swahili or something). The rhythm and variation in tonality are a definite part of language development, and so I'm ecstatic. He was very excited to be at the party, which also thrilled me; he used to wig out in any new situation.

When Max is doing really well, I find myself thinking back to how little faith I had early on in his life that he would be OK. Max has microcephaly, which basically means the circumference of his head is small and so is his brain. The risk of the condition is that it can affect brain function. Early on in life, a couple of doctors made much of the fact that Max was microcephalic, which caused me great concern. I'd get anxious whenever we'd go to a doctor and he'd take out a tape measure. Once, I asked Doc Cargan, our wonderful pediatric neurologist, whether Max's head would look like the shrunken-head character at the end of Beetlejuice. That gave him a good laugh, though I was only half-joking.

Eventually, I learned that you can have a family history of microcephaly. As it turns out, my father also has a really small head, and the man is brilliant. Not for nothing, Albert Einstein's brain was also smaller than average.

I'm not deluding myself here. Max's brain doesn't work perfectly. But it works pretty darn fine, especially considering that he had a major stroke at birth. And his head looks perfectly OK—the good hair probably helps! The most important thing is that he continues to progress. That's a hard lesson I've learned: forgetting Max's medical history, not letting my mind go to crazy places and staying focused on what he's doing.

And this child continues to amaze me.

Around 12:00 EST today, a first post of mine goes up on 5 Minutes For Special Needs‚ check it out when you can.

Saturday, January 24, 2009

10 honest things about me

Thanks to Mel from Fraase Family and Ally of Ally in Wonderland for the "Honest Scrap" award. I'm flattered! Here's what I'm supposed to do:

A) List 10 honest things about yourself—and make them interesting, even if you have to dig deep! B) Pass the award on to 7 bloggers who you feel embody the spirit of the Honest Scrap and whose blogs you find brilliant in design or content.

So, first, 10 honest things about me.

1. I am almost four years older than my husband. We met at a dance club.
2. I am a piano idiot savant. I can play pieces like "Moonlight Sonata" by heart, but when I go to note read I'm completely flummoxed.
3. Once in a while, I cry in the shower when I think about what happened to Max.
4. I drive like a New York City taxi driver.
5. I have never watched Lost, Mad Men, 24 or Top Chef, but I have not missed a single episode of American Idol.
6. I am a gifted sleeper.
7. I have one of those familiar faces, and people often think they know me when they don't. At a recent event, I got to meet Condoleeza Rice. Yes, I did. She shook my hand and said, "We've met before, haven't we?" And I said, "No, I haven't had that pleasure." And she said, "I know you from somewhere!" Well, I wasn't going to argue with her.
8. I consider making scrambled eggs cooking. Can you say "takeout"?
9. I am not afraid of snakes, mice, spiders or bees. But I am really afraid of cockroaches.
10. Sometimes, I hide in my bedroom from the kids so I can blog.

Time to pass the "Honest Scrap" award along to 7 bloggers. I wish I could give it to all of you! But no, just 7, per the rules. I've chosen a mix of new and old blogging friends. Do not feel any obligation to do this if you don't feel like it. And the award goes to... Dianne at Nothing But Everything, Sarah at My Crazy Mommy Life, Mia at General Hysteria, Pia at Welcome to Par(ent)adise, Holly at Caleigh's Corner, Trish at Another Piece of the Puzzle, Jenn at The Pregnancy According to Jude.

Thursday, January 22, 2009

Friday Fun: It's primal scream time

So, here's what today is all about: Shout about something that's bugging you. Just get it out there. No holding back. No censoring yourself. No need to seek reimbursement from the insurance company, this therapy session's free. Here come mine:




Whew. I feel better now.

Really helpful stuff for kids with special needs (or any kids)

Today, I'm listing some things that have made life easier for Max and our family (but mostly for Max). Please add your own discoveries!

1. A great highchair

A year or so ago, at the recommendation of an OT, we bought a Keekaro. It's a good feeding chair for any kid, but it's especially wonderful for ones who need extra support. We got ours with a cushion that's easy to wipe down. It's for tots ages six months up, and can be adjusted to fit someone up until (so says the site) he is 250 pounds. I'd say that if your child hits 250 pounds, you've been using the feeding chair entirely too much and need to go find a hobby.

2. A great spoon

The Boon Bender came recommended by another OT. The plastic is malleable and can be angled, so it's handy for kids who aren't that coordinated about getting food into their mouths. Works for Max!

3. Great nutrients for nurturing kids' brains

When Max was in the NICU after he was born, a world-renowned pediatric neurologist came to examine him and mentioned Coromega Omega-3 Dietary Supplement. It's this orange-mousse concoction packed with Omega-3s, which are said to boost brain development. We slipped a half-packet into Max's food once a day when he was young, and now we go through one a day. We also use Nordic Naturals Omega 3•6•9 Junior (and the adult version for us).

4. Great toys for kids development
A couple of months ago, I blogged about smart toys for kids. One more I've since discovered:

Cranium Balloon Lagoon (geared toward five-year-olds and up but fine for a four-year-old) gets kids to use their hands in all sorts of ways and think creatively and logically. Max tried it at our friends' house this weekend and did an impressive job of fishing magnetic alphabet letters out of a "lagoon." It's in high demand, so see if you can find a used one on eBay. UPDATE: Mommie Mayhem is right, they're on sale for $10 at Toys R Us! Go get 'em!

5. Great (and free!) online educational games
These sites get two thumbs up from Max (OK, two hands up, he's not very adept about extending those thumbs—why his computer touch-screen comes in handy): Kinderweb and Kaboose Funschool.

Wednesday, January 21, 2009

7 Questions adult with disabilities

Meet Kara Udziela, a 39-year-old mother of two who runs her own successful public relations agency, Vibrance PR. Kara has cerebral palsy. She talks just fine, she's super-smart and she's funny. I hope you find her as inspirational as I did. Kara's happy to answer any questions you may have, so fire away in the comments!

How old were you when you were diagnosed with cerebral palsy?
Around one years old. I failed to walk and dragged the right side of my body when crawling. I have spastic cerebral palsy, which affects my entire right side. I walk with a pronounced limp and have a very stiff right arm that is pretty much useless except as an anchor for grasping things the left one's holding.

What prognosis were your parents given?
They were not given much of a prognosis, just a series of doctors and hospitals trying to do various surgeries and therapies to improve my walking. One doctor mistakenly cut the wrong tendon in my right calf when I was five, leaving me with no calf muscles and a withered leg. Several operations were done to compensate for that.

Growing up, which therapy was most helpful to you, and why?
I had it all except for speech. What I think should be given to all disabled kids—especially when they hit 1st and 2nd grade and when they are teens—are self-esteem classes, psychological counseling if possible, and exposure and interviews with grown-ups who have similar problems to them. I did not have this, and spent a lot of my twenties not dating—I assumed because of my CP. When I was 28, my final single girlfriend was getting married and I broke down in front of her. She suggested a counselor she knew. I went and said, "I am disabled, but haven't let that define me. I have a good job, an M.A., a house, and friends, but I would like to be married, but A, I think I secretly think I am not worthy of love despite all my parents have tried to do, and B, if I can never be married, can you at least help me to be happy without that?" This counselor was the perfect fit for me. Within months I was reacting differently when people asked me why I was limping or tried to help me with things. Within a year I was dating, a lot—and believe me, even without cerebral palsy, I would not be classified as anything other than mildly pretty. So that had to come from my attitude.

Kara with her husband, Chris, and Lex, now 1

Actually, you're very pretty! So how'd you two meet?
We were both at an Oregon hippie/yuppie retreat at a hot springs. We had to walk a ways through trees and such to get to the springs and all my friends blew me off. I could never have done it alone. I turned to Chris—he was a friend of a friend—and said, "I don't know you, but I can't get there by myself. Will you walk with me and hold my hand?" He did, and he half-carried me over boulders and rocks and held my hand tight at rough patches and we talked the whole way there and back. Three months later, I fell down stairs and hurt myself. I thought he would leave. My mom said, "This is his test." He didn't leave. He picked me up and pushed my wheelchair and nursed me. And when it happened again six months later, he said that he loved my soul and my spirit and that he was going to marry me. We have been married for seven years.

What's been the biggest challenge for you?
I still to this day have problems with the stares people give you, and I hate watching myself on video, but that is only because in my head I look and act and walk and move the exact same way as you do.

Got any favorite websites? Thoughts beome things, choose the good ones. Hokey spiritual The Secret kind of stuff, but the daily e-mails pump me up.

What's the most important advice you'd give to a parent of a special-needs child?
First, be vigilant of your child's health and care—trust no one completely. Always check doctors' credentials and history and get at least three opinions on surgeries or treatments suggested for your child even if it is a doctor you have known a long time. Second, do not discourage your kids AT ALL. Just because you don't think he can be a veterinarian based on his physicality doesn't mean he can't find a way. And, last, a positive attitude really is a priceless tool.

Kara with Liam, 4

Tuesday, January 20, 2009

Happy Inauguration Day to you

Dave and I capped off the three-day weekend by going to a movie last night. It's something we often do at the end of a vacation, a last hurrah to stretch it out a few more hours. We finally got to see Slumdog Millionaire, and it was engrossing from start to finish. That said, it revolves around some pretty depressing material, and in the end it disturbed me more than it moved me (and usually, as I've mentioned, I love crying at movies). The film was directed by Danny Boyle, who also did Trainspotting, another very uplifting film. Slumdog's worth seeing on the big screen, if you can.

As much as I enjoyed having a long weekend, I couldn't wait for today to come. I'm feeling mildly Cinderella-like since a bunch of coworkers and friends are in Washington, D.C. and I am not. Mostly, I'm beyond excited, so much so that I had trouble sleeping last night. To me, this inauguration—with its "A New Birth of Freedom" theme—also feels like a rebirth of hope and optimism.

I wish Max could understand what's going on. Sabrina's a little too young. Still, I'm going to record the ceremony and talk about it with them when I get home from work. Even if they don't really get it, they'll get my excitement and hopefully remember this day.

And how are you feeling today?

Monday, January 19, 2009

Monday Confessional: How high are your expectations for your child?

Max, ace skier

We just got back from an amazing weekend at our friends' rural home. Saturday was frigid, around 15 degrees, but Sunday was a virtual heat wave—25 degrees!—so the kids tried skiing. The mountain we visited participates in an adaptive ski program for the disabled, Stride. Joe, a professional instructor, was on hand to give Max a private lesson. He was a total saint. A skiing saint.

On the car ride up to our friends, I started wondering whether Max would tolerate ski boots. They're clunky and heavy for adults—would he be able to handle them? Would he mind the cold? Would he keep his balance on a pair of skis? I decided that if Max would just let us put the boots on him and he stepped around in the snow for a bit, I would be content. I believe this is what's known as a defense mechanism; I set low-ish expectations, so I won't be disappointed or sad if Max doesn't achieve what we'd like him to. I never let it show. I cheer Max on and say "You can do it!" even if I am not so sure inside my head.

Max was freaked by the frenzy inside the ski lodge and wailed. When we walked over to the rental area to get him ski boots, the very sweet teen guy at the counter took a liking to Max and gave him the royal treatment. The dancing snowman perched on the counter also helped relax him (God bless those corny little gadgets). Suddenly, there was Max clomping around in boots, extremely pleased with himself. When we got him onto skis, he was a little scared. Then he started loving the feel of sliding around on the snow and giggling. He was able to keep the skis parallel, a real feat. I was ecstatic! Once again, he amazed me.

Sabrina, who I thought would love skiing, was a real grouch (see Exhibit A, above). She kept complaining the boots hurt and that she was tired, and lasted maybe a half hour. Max was out for a good hour!

In other events this weekend, Sabrina and I had a bedtime stand-off and she announced, "YOU'RE FIRED!" Where the heck did she pick that up from—Donald Trump? We also discovered this weekend that Max is a chocolate-milk fiend, he drank his body weight in it, a good thing since he's so thin and we'd like to beef him up. We're off to get him gallons of the stuff.

Tell me, do you always set the bar high for your children—or do you sometimes do the low-expectations thing?

Friday, January 16, 2009

Friday Fun: What's your favorite room in your house?

I love looking at other people's homes. I've been known to drag Dave along to open houses in our area. And I'm always happy to drive around at night, prime-time for peeking. I'm not interested in what people are doing; I just like seeing how they've decorated.

My favorite room in our home, a 1910 colonial, is the dining area. The previous owners expanded the kitchen, did a cathedral ceiling and painted it this cheery red. Hey, I bought the light fixture! (And, yeah, I cleaned up the clutter before I shot this.) The winter when Max was born, I sat in this room for hours on end, looking out at the snow-covered golf course. I'd cuddle Max, sing to him and tell him he was going to be OK as the sun streamed in and warmed us up. Sitting here is still calming, even if Max is banging a truck on the table and Sabrina is doing laps around it and screaming "I'M PRINCESS ARIEL!!!"

So, welcome to my first blog-post party (I believe this is officially known as a "meme," but I'm not that blog-y). Which room in your house makes you most happy? Put up a photo of it on your blog, explain why you love it and link back to this post. Then fill in the form below. Can't wait to see your spaces!

Thursday, January 15, 2009

Life BC (before children)

Glam, weren't we?

Dave took me out for sushi last night to celebrate our eighth wedding anniversary. Before I left work to meet him, someone asked why we got married in January. That's easy: We wanted a nice-sized wedding and they have sweet deals in January. (And, no, I'm not always that practical.)

Before we had kids, Dave and I used to go out all the time. We saw every good movie, went to museums and the theater, hit dance clubs, took drives to random interesting places or just hung with friends. We do a lot less of that now. For years, I volunteered on Thursday evenings in the pediatric playroom of a hospital that treats cancer. The kids were easy to be around—they just wanted to be kids and play, and after awhile I got used to seeing them bald and hooked up to IVs. It was the parents who were hard to take, I could always sense their sadness. I miss volunteering, and I'd like to do a weekend project at some point soon.

Some other things I miss about life before children:
• The obvious: No worrying about biggie stuff. Like, will Max talk? Will he be able to better use his hands? You get the point.
• A neat living room. A neat kitchen. A neat bedroom. A neat bathroom. A neat anywhere.
• Long showers where nobody's pulling back the curtain and saying "Hi, Mommy!"
• Blasting Bruce in the house at full volume.
• Lazy Sundays. Some weekends, I'd be grateful for a lazy 10 minutes.

Got something you miss?

Wednesday, January 14, 2009

I still need my Mom. Do you?

My mom stayed at our house till Tuesday morning. When she's here, everything in the world feels OK. She plays with the kids, feeds them, gushes on and on about how brilliant and cute they are. Sabrina inevitably says things to her like, "Babba, who colored on your legs in purple crayon?" (My mom has varicose veins.) And "You're old! If a monster comes to get you, will you be able to run?" And "Mommy is mean and tells me what to do!" Max loves to cuddle on the couch with her.

My mom is the most nurturing human being I know. When I left for work on Monday morning, she handed me $5. "Buy yourself some breakfast," she said. She'll make our bed while I'm in the shower. She'll clean up whatever mess. She'll prepare a bowl of strawberries for me. I don't ever ask her to do anything, she just does it.

Some days, I feel the weight of the responsibilities of bringing up a child with special needs. But when my Mom's around and looking after me, I remember that I'm someone's child, not just a mother. And it's comforting.

Even if she is always telling me I look better with a little lipstick on.

Tuesday, January 13, 2009

The ex-neighbor's not an ax murderer (but—horrors!—my kids watch too much TV)

So, about the mysterious bones they discovered in my new next-door neighbor's backyard: The sweet, elderly guy dropped by last night to tell us that the police tested them and they were "animal" bones. OK, then. No ax murderer of human beings lived next door to me, let me set the record straight. Why animal bones were there, who knows.

In other news, I am thinking of taking the drastic step of hiding all the DVDs in our home and telling the kids something like "The DVD fairy has taken them back until you're 25." On weekends, they glue themselves to the screen any chance they can get. It's gotten so bad that if they were watching a movie and I said, "HEY, KIDS, YOU CAN HAVE CHOCOLATE PUDDING AND CANDY FOR DINNER! AND I WILL BUY YOU EVERY SINGLE TOY IN TOYS 'R US TODAY! AND YOU CAN GO ROLL OUTSIDE NAKED IN THE SNOW, JUST FOR FUN!!!" they would not hear a single word I said, they have become such DVD zombies.

I think the occasional video is fine, but too much just cannot be good for their brains. Especially Max's. He is six years old, but cognitively he's significantly younger. He (and Sabrina) would be much better off reading or playing. I've heard of families that don't let their kids watch any TV or videos. I used to think that was extreme, but now I get the point.

If you have a toddler and you didn't hear about this study on how videos like "Baby Einstein" aren't necessarily good for tots, check it out. I know that the American Academy of Pediatrics recommends no more than two hours of screen time a day but on weekends, our kids' TV consumption can be double that. And that's not counting computer and Wii games.

I just Googled and found a great book, The Berenstain Bears and Too Much TV. Ordered! I also got The Berenstain Bears and the Trouble with Chores because Sabrina has a bit of a "No, you pick it up!" 'tude. Sadly, there was no The Berenstain Bears and Husbands Who Do Not Take The Time To Fix Broken Things book. Dave!

What's your policy about your kids and TV/videos? And if you have any tips to share about weaning them off it, please share.

Monday, January 12, 2009

Monday Morning Confessional: More "duh!" Mommy moments

I was on the phone with my friend Wendy this weekend, talking about Sabrina's upcoming birthday party. "I hate to tell you this, but you put the wrong date on the invite," she said. The party is Sunday the 25th. I wrote Sunday the 24th. Oops.

I bumped into a friend in town yesterday, and we were laughing about the mistake. She told me that when she sent out invites to her daughter's birthday party last month, she mailed a few envelopes without any invitations inside. Just empty envelopes.

Got a good "duh!" Mommy moment to share?

P.S. One day this week, I'd love to try a meme—a blogger (that would be me) comes up with a theme for a day, and anyone who's interested in participating does a post on her own blog related to it. Game to try it?

P.P.S. My other confession is that I had chocolate for breakfast, lunch and dinner this weekend. And I don't regret any of it.

P.P.P.S. Didn't get to see Slumdog Millionaire this weekend after all, and now everyone and their mother will be lining up to see it because it won all those Golden Globes. Damn.

Saturday, January 10, 2009

Mom sleeps late, family survives

This is what my bedroom looks like. Right.

Sad but true: I consider sleeping late a major accomplishment. Dave let me sleep in this morning, and I woke up at 11. The kitchen was a holy mess from breakfast, but OK, I couldn't be an ingrate. I got a whole 11 hours of sleep, and felt amazing all day.

Ever get to sleep late?

Stuff I missed in Mommy school #1: How to prevent lice

Anyone else remember Wacky Packs stickers from their childhood?

Happy weekend! I'm looking forward to a visit from my Mom and sister. Dave and I are dying to see Slumdog Millionaire, which is supposed to be an incredible story. We finally saw Milk last weekend and while I am not a big fan of Sean Penn himself, he did an outstanding job acting in the film. It was amusing to see such a real-life macho asshole kissing another guy.

OK, on to...bugs! I was talking with one of my best friends, Hedy, last night, and she was telling me a few kids in her kids' school had lice. Then she told me about Fairytales Hair Care, products that are said to naturally repel lice. I was like, how did you hear about that? She always seems to know critical mom information that I somehow missed. Every mom needs a Hedy in her life.

This summer, some kid in Sabrina's camp got lice, but it wasn't an outbreak, and so far I haven't heard of any such thing in Max's school. My sister and I got nits as kids, I still remember how much the shampoo stung my eyes. Worse, my mother made me chop off all my hair, so I basically had a boy crew cut. When I'd walk into the girl's room at the library or a restaurant, inevitably I'd hear, "Little boy, that's the girl's bathroom!" Still not sure I've recovered from that.

Friday, January 9, 2009

Kids behaving badly

Max and Sabrina, before sibling rivalry struck.

I'm still feeling all warm and fuzzy from putting up yesterday's post, and getting such nice feedback. Thank you. Especially because this week the kids have not exactly been making me feel all warm and fuzzy.

Sabrina is turning 4 this month, we figured we'd lucked out and skipped the terrible twos and terrible threes. But is it possible to have the terrible fours?! Because she has become master of the meltdowns. Tonight, after she kicked Max as we were in bed reading books and I reprimanded her, she sprawled out on the floor and writhed and shouted like she was straight out of The Exorcist. She eventually calmed down and came back into bed. At which point Max decided it would be fun to kick her.

Sometimes they feed off of each other's badness. Even though in my heart I am a little glad that Max is smart enough to know just how to press his sister's buttons. As a toddler, Sabrina was obsessed with her pacifier. "My habifier," she called it. Max, who has so much trouble using his hands, developed a knack for swatting the thing right out of her mouth when she got on his nerves. Sabrina would wail, but Dave and I got a kick out of seeing him do it.

Once, when Max was about 2, we went out to dinner. In the middle of our meal, Max was getting antsy and he grabbed a chunk of bread, threw it, and it landed on another family's table. "WOOO HOOO!!! GREAT THROW, MAX!" I screeched without thinking, so excited that he had managed to grasp a chunk of bread. Back then, he really wasn't grasping much of anything. Then I realized that the family of four at the other table was glaring at me.

What "bad" behavior doesn't really get you mad? What behavior does? Discuss!

Thursday, January 8, 2009

What I wish I'd known when Max was a baby

Max at ten months doing his best Buddha imitation.

Recently, I got an e-mail from Jennifer over at The Pregnancy According To Jude. She said the blog and Max were inspiring to her, which I was grateful for, and she told me all the heartbreaking stuff she'd been hearing about her baby (like Max, he had a bilateral stroke). Things like Jude might not walk, Jude might not talk. Dave and I were told the same about Max. I got another e-mail from Whitney, mom to little Suze Beth Booze who had encephalitis and resulting seizures. Whitney's also been told the worst by doctors about her little girl.

I know just how they're feeling. You hear so many horrible things from doctors that you're not left with a whole lot of hope. You feel anxious about your child's future every waking moment, and all the while you're struggling to accept that the baby you expected to be like every other baby isn't. I've said it before to other moms, those first two years are the toughest. I wish I'd known back then some of the stuff I know now. And so, Jennifer, Whitney and all the other wonderful moms I have met through this blog, this post is for you. These are the things I only realized in hindsight. I hope they help you, in some way.

• Put away the What To Expect book you may have bought, cancel the "Your Baby This Month" e-mails from Babycenter. Constantly comparing your child to typically-developing kids will only make you despair. Your child will develop at his own pace. As long as he keeps improving, that is the key thing.
• Don't attempt to diagnose your child yourself. Seizures were my biggest fear after Max got out of the hospital. I'd read up obsessively on them, and then convince myself that Max was having one kind or other. Max's neurologist finally set me straight.
• You need to have at least one doctor, ideally more, for your child who besides being wise is also a kind, rational, reasonably optimistic human being. And who also understands what you're going through. Try with all your might to find this doctor.
• If you need therapy, get it. I did. If you need to cry, do it. I did. In the car when I drove Max to therapy appointments, in the shower, as I lay in bed at night. You've been through a trauma. You have to get the grief out of your system.
• Accept help. I am a pretty independent person who likes to do things myself. But after Max was born, and I was feeling overwhelmed by all the doctor and therapy appointments while adjusting to having a baby, I let my sister do the housework. I let my friends look up information for me. I let Dave spoon-feed me dinner as I breastfed Max. They got me through that first year.
• Try hard, try so very hard, to enjoy your child. Look at how delicious Max was. I knew it, but I didn't enjoy him as thoroughly as I could have because I was so consumed with fear about what he would "be" like. All of you have beautiful children. Stop peering so hard into their future, and enjoy them in the here and now.


Wednesday, January 7, 2009

The best music for kids (that grownups like, too)

I cannot get this song out of my head—listen at your own risk.

I was driving the other day, Dave had left Sirius on the ABBA station and "Thank You For The Music" came on. It's been in constant rotation in my mind ever since; I am seriously ready to go out and get a sequined pantsuit and karaoke machine. I've realized that ABBA would be a great group to introduce the kids to—such happy, boppy, fun music.

There are lots of excellent kiddie singers out there (Laurie Berkner, They Might Be Giants, Milkshake, Dan Zanes, Justin Roberts, Rebecca Frezza, Brady Rymer), but it's amazing when your kids like the same music that you do. Mine are into The Beatles, Maroon 5, the Gipsy Kings. They tolerate Norah Jones, Miles Davis and Chopin playing in the background. They're not much for rock yet (sorry, Bruce and Red Hot Chili Peppers) or The Grateful Dead (Dave's fave).

Music has been an amazing thing for Max. He's able to sing along in his own way, and is pretty much in tune. I love hearing him use his voice. Once a week, a music therapist (the one who Max has a thing for and Sabrina is jealous of) comes to our house, plays guitar and sings songs. Max and Sabrina always have the time of their lives.

Which music of "yours" are your kids into?

P.S. No word yet on whether the ex neighbor is or isn't an ax murderer, stay tuned.

Tuesday, January 6, 2009

A weird-neighbor story, for your amusement

Vintage Max, on our street.

So, I didn't mean to bum out everyone yesterday morning, especially on a post-vacation Monday morning. I just blog it as I think it. As repentance, I offer up this juicy tidbit.

For as long as we've lived in our house (six years now), the neighbor to the right of us has barely said hello. A guy in his mid-fifties who was always puttering around in his backyard. There was a woman living with him for a few years, then suddenly I never saw her anymore. From what we could see through the shrubbery, his backyard looked like a holy mess, with filled garbage bags lying everywhere. Once, he dumped all these empty alcohol bottles in the little patch of woods across the street from our house, and he got caught and received a citation. Like I said, weird. Very.

Anyway, he moved out last month and a sweet, 100-percent normal elderly couple moved in. On Sunday, I noticed two police cars on our street. I organized a neighborhood watch several years ago, after there was a robbery down the block, and I'm supposed to send e-mail alerts if there's any criminal activity. I called the police dispatcher to see what was up. "Nothing criminal, just an ongoing investigation," he told me.

Cut to last night. I get home late from work because of a delayed train. "The man next door stopped by," Paulet tells me. "He said not to be nervous, there's a police investigation going on because they found some human bones buried in his backyard."


I practically sprint next door. The couple's grandkids were playing in the back of the house and found some bones that seemed human. Cops came by. Then they found a pacifier buried under the deck which, my neighbor said, "Made the cops go crazy." Said bones have been sent out for DNA testing. They'll know the results in a few weeks.

There you have it, a little Desperate Housewives mystery in my neighborhood. But who doesn't have some story about a bizarro neighbor?

Monday, January 5, 2009

Monday Morning Confessional: Ever wonder about the "normal" version of your child?

Max's smile, along with his cerebral palsy, are both part of his personality.

I've been on an inexplicable organizing frenzy since we got home from vacation. I've gathered bags of clothes for the Salvation Army, put the kids toys' in some semblance of order, plowed through piles of paper. One of the things I unearthed was a therapy schedule I'd written out when Max was two. He had at least two sessions every weekday, plus hippotherapy on Saturday mornings. Thursday was especially jam-packed: speech at 9 a.m., OT at 12:30, a teacher at 3:30, another OT at 4:30 and PT (the therapist did the MEDEK method) at 7:15.

The schedule got me thinking about all that Max has been through in his six years, and all that Dave and I have been through. I've heard other parents of special-needs kids say they wouldn't trade their child for the world. I used to think they were deluded, but now I get it. Max's unique way of expressing himself—with animated sounds and the occasional word—is part of his personality, as is the cute way he hobbles when he walks, the determined way he manipulates his hands to get them to do what he wants, the expressiveness of his eyes, even the drool. Still, I sometimes wonder what Max would have been like if he'd been a typically-developing kid, how our family life would have been different. Do you sometimes think about those things, too?

Saturday, January 3, 2009

The wildlife we spotted on Captiva Island

The dolphins are at second 15, if you're impatient.

We went an a one-hour boat cruise. Max didn't want to get onboard at first (new situations sometimes scare him) but he settled down, and then he was pretty amazed by the dolphins. At one point, he grabbed my Flip video camera and proceeded to film everything in sight. I now have video clips of every passenger on the cruise.

Our other major wildlife sighting occurred after I took one of the Doritos Sabrina was eating. "I WANT IT BAAA-AAACK!" she shouted, then she threw herself on the floor and had a tantrum, flailing legs and arms and all. I'll spare you the video footage.

We're on our way home now, back to the cold and other realities. Thankfully, I feel completely rejuvenated from this trip. But please God, no snowstorms till I'm back for a week or so. Deal?

Friday, January 2, 2009

Procrastination: Are you a pro?

Today's guest post is from Shannon over at Cerebral Palsy Baby. When I was first thinking about starting a blog, I found hers at 4 a.m. one Sunday morning, e-mailed her to say hello and she was incredibly encouraging. She's also an amazing craftsperson, see her blog for some samples of the stuff she sells on Etsy. I bought a crayon roll, they're adorable.

I've always been a procrastinator, but like many of you (hopefully), having children has only worsened my condition. Having a child with disabilities means that I need to be on top of their appointments and schedules but the schedules for me and my husband have long gone by the wayside. I promised my husband six months ago I would find us a new dentist. Well, I need to make that call today. Being a stay at home mom has also really fed into my procrastination. I shower (as often as I can, which means every other day most of the time) and dress according to what we need to do that day. I can't remember the last time I plucked my eyebrows. I guess I really am becoming that mom. But right now when my girls need me so much and we're doing as much for them as humanly possible, they are my top priority and other areas will suffer, as little as possible, but there will still be some suffering. I made caramel corn last night, so there really isn't that much "suffering."

So, in your world, what takes top priorities and what gets left in the dust? If you could add an activity/hobby, what would it be? I know people who shower, dress nicely, and put on makeup every day before they can do anything else. I make a pot of coffee every morning, make sure everyone is fed, and there are adequate clean clothes (I can't ever keep up on socks, though, weird). Hair brushing comes when I remember. Luckily Elise's hair is so short it doesn't require combing. I sew and make soaps because that is my release from stresses and the daily grind. It is important for me to get that break, even if the girls are wrestling in the living room over some toy and screaming, I'm still in my zone for a few minutes.

Take care everyone.

Thursday, January 1, 2009

How much do you trust doctors?

The post I did a couple of weeks ago on good doctors vs. bad doctors stirred up a lively discussion. Katy from Bird on the Street, mom to impossibly adorable Charlie (see?), had more to say on the topic, so she's today's guest poster. Happy New Year, all. I hope it's filled with happiness, health and lots and lots of progress for our kids.

I think that most of us grow up thinking that doctors are all-knowing. If we're sick, they make us better. They heal us. It's hard not to be in awe of people with that kind of power.
The truth is that most pediatricians have it easy: strep, ear infections, and childhood vaccinations are all pretty easy to handle. Things like brain damage are a totally different story. There is little black and white; brains are plastic and there's no telling what one will do.
So how much do you trust the doctors who monitor your child's brain? For me, my respect went out the window on the second day of Charlie's life. The doctor predicted that he would have "no brain wave activity." He said that he would do the EEG again in eight hours, but his prediction was that Charlie was brain-dead.
Guess what? He wasn't. Not even once. While not normal, Charlie never failed to show brain waves.
So I take what they say with a grain of salt. Doctors have to earn my respect—I'm not handing it out for free. I am a big fan of Charlie's current neurologist and I feel like she respects me and my decisions. I ask a lot of  questions, though. I spend  time considering the choices I make. I decided to hold off on vaccinations until Charlie's second birthday (which will be here before I know it) because I wanted to protect his already-assaulted brain. I decided I didn't need an MRI of Charlie's brain or a visual evoked potential test because neither could tell me much about his future or his abilities. It felt like excessive testing for the sake of testing. This is not to say that I don't trust his doctors. I do. But I am the running the show and I'm not going to let someone tell me how to take care of my child. They have lots of patients and I have only one.
So how about you guys? Do you trust your child's doctors implicitly?


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