Friday, April 30, 2010
As you read this, I'm hanging at my friend Maryellen's beach house. I took the bus out here Thursday night; Saturday, Dave's going to drive up with the kids.
I am rarely the victim of Mommy guilt but when I said goodbye to Max, I got a gigantic pang of it. Zap!!! Right to the heart. Max doesn't quite get the concept of time, so when I kissed him a zillion times and said he wouldn't see me till Saturday, it went over his head. Sabrina seemed a little put out about my departure, but then SpongeBob SquarePants came on and she forgot all about me. I think she loves SpongeBob more, but I can't be sure.
I hate feeling like I'm putting something over on Max because he doesn't understand. On the upside, I am quite sure he's going to have the time of his life with Dave, since the last time I went away (for Blissdom), he had ice-cream several times daily, got to skip his bath and wear his favorite shirt three days in a row, and learned how to say "Read my lips: Noooooooo." Who know, maybe this time they'll even get over to Hooters.
Heads up: a reader with 18-month-old twins asked me about the Anat Baniel Method. I've heard good things about it. Have any of you tried it? What was your experience? Please share.
Thursday, April 29, 2010
I've been living in the past for the last few days, ever since I went to a high school reunion on Sunday night and reconnected with old friends who are now my new Facebook bffs. (Hi, Varda! Hi, Kelly! Hi, Marlene!). Notice I am not telling you which h.s. reunion, although perhaps the height of my hair gives it away. It was surreal to see people I haven't seen for such a long time. It didn't make me feel old or anything, because I'm never going to be old, but it did make me realize how fast life goes by.
Best bio line ever, from a guy: "I'm fat, but I still have all my hair."
I was a little disappointed that nobody commented on how much less poufy my hair was. What can I say except there weren't really great hair products back in high school; left untamed, my hair rose to those heights of its own accord.
We traded notes on life, kids (general consenus: Max and Sabrina are cute), memories. People looked great. The guys had generally aged more than the women did, probably because they weren't wearing foundation and Spanx (well, I'm assuming none of them wore them, but you never know). Poor Dave, I dragged him along and then abandoned him at the sushi bar as I flitted around like a social butterfly on speed; there were a lot of people to catch up with.
In general, I've found that most people either love reunions (me) or consider them only slightly more tolerable than a visit to the dentist. Where do you fall?
Posted by Ellen at 12:50 AM
Wednesday, April 28, 2010
Ken, a thoughtful (and funny) writer over at Blogzilly who's dad to Bennett, wrote a comment yesterday that really moved me. It was in response to my flip post on what Max would say if he had more words. Ken wrote:
"I hope to be where you are someday. In my present state of mind I would be focusing on what my son can't say. Your post shows there is hope to be in a better place and instead have some fun with it and be in a better place."
This is something I've been meaning to talk about. Because here's the thing: I know I seem pretty well-adjusted. I am. I know I seem pretty upbeat. I am...now. If I had started this blog when Max was first born, or even a couple years later, this would be a very, very different blog. It would be a blog filled with worry, hand-wringing, and all sorts of dark thoughts. To some extent, it's taken the passage of time for me to get to this better place, but along the way I happened upon some things that helped:
• I talked about my worries and my grief. With friends, with other parents of kids with special needs, with people in support groups, with a therapist. Now we have blogs, but there's nothing like having a real conversation to get the trauma out.
• I found ways to savor Max. I've written before about how my fears for Max's future would sometimes overshadow the fact that I had a really cute, delicious baby. So I got into taking photos of him. Lots of photos. I'd order prints and meticulously put them in photo albums. I made photo murals and hung them around the house. I'd order photo calendars of Max for Dave and family. I had a photo gallery of Max in my office. The photos brought in the joy of having a child, the joy that can get so easily squashed by all the medical drama.
• I'd make myself remember that as sorry as I felt for Max, he wasn't feeling sorry for himself. He was perfectly content. He didn't know that he was having trouble picking up the toy car because his hands were tight from the cerebral palsy; he just knew to keep trying.
• I'd think about how much worse things could have been. This was a total shift in perspective, because for the longest time all I could think was, Why did this happen to us? Why am I the only one out of everyone we know to have a child who suffered such a catastrophe at birth? But when I'd consider far more awful things that could have happened, I'd suddenly feel a lot better about the present.
• I put together the best team of experts I could find. I researched doctors and talked my way into appointments, shamelessly throwing myself at the mercy of secretaries. I made sure Max had experienced Early Intervention therapists. If someone wasn't working out, I'd go to bat to find a replacement. I fought the insurance company to pay for more therapies. And we tried alternate stuff, too, like craniosacral therapy and hyperbaric oxygen treatment. I was determined to give Max every possible chance at succeeding in life. Taking action was helpful for me, too; I felt like I had some control over a situation that seemed wildly, and scarily, uncontrollable.
• I didn't beat myself up. Between all the therapeutic exercises experts gave us, I could have spent 24/7 working with Max. I did my best, and I refused to feel guilty about not being able to do every single thing. Putting all that pressure on myself would have only made me more stressed, and that wouldn't have done Max any good.
• I forced myself to quit paying attention to major milestones. No more looking at the developmental books, no more updates from BabyCenter. I was only torturing myself by comparing what Max should have been doing with the reality of his delays.
• I learned to celebrate small, everyday achievements.
• I also learned to hunt down the happiness. If I was bummed out, I'd get in touch with one of Max's therapists and talk about the good things he'd been doing. That always gave me a lift. A little wine never hurt, either.
• I finally got to acceptance. It came excruciatingly slowly because it kept head-butting with hope—my hope that Max would completely prove the doctors in the NICU wrong. As time went on, and it was clear Max had challenges, I readjusted my hopes. I was no longer looking for the miracle; I just really and truly hoped that Max would keep on improving. And he has. As our saint of a neurologist has always said, "Don't look at books, don't look at medical records, don't look at charts. Look at your child, and what he's doing."
And so, that's pretty much how I have gotten to this place. If you regularly read this blog, you know I still have the sad moments. I cry on occasion, including when I write posts like this that take me back to the early years. I still have a streak of denial; I have Photoshopped the drool out of photos. I have freakouts about Max's future. But I have come a long way, both in years and in my mind. I've learned. I've adapted. I've adjusted. I no longer see myself as a person who had a really horrible thing happen to her; I no longer see Max as a poor, unfortunate child.
I am a mom of a very wonderful kid who has some challenges, a kid whose smile heals me every single day.
If you have any words of advice to add, or you have a question you'd like to ask, please do.
Tuesday, April 27, 2010
I was on a crowded train today and there was a little boy, about three years old, riding with his mom. An elderly gent struck up a conversation with him. Suddenly the kid said to the guy, "You have a big nose."
Everyone on our side of the car cracked up. It is not a usual occurrence to have a car packed with New York City subway riders congenially laughing together; typically, it's just one cuckoo guy cackling to himself as everyone avoids eye contact with him.
"Well, I never knew that about my nose!" the guy said, totally amused, and everyone laughed again.
As I stood there, I started wondering what sort of crazy stuff Max might say if words could easily flow from his mouth. This is not to say Max doesn't communicate in his own way; he most definitely, and gloriously, does. Through words he says, some very clear and some garbled, though I understand him; through signing; through his Dynavox communication device (he has phrases on it; someday, he'll form sentences).
It was just one of those reveries you sometimes have as the parent of a kid with special needs, wondering what another version of your child might be like. They're not sad musings. They're just...musings.
This is what I could hear Max saying:
"Mom, please get me only purple clothing from now on. Including underwear."
"Can we live on the Disney boat? Please?"
"I would like only purple dishes, too. Also, I don't think it would cost a lot of money to paint the house purple, you can use what's in my piggy bank. You can use what's in Sabrina's piggy bank, but maybe don't mention it to her."
"These ugly braces on my feet are cramping my style. Doesn't Prada make DAFOs?"
"Of course I am completely capable of doing the potty thing. I choose not to get fully toilet trained because, well, skip it. It's an existential thing and you wouldn't really understand."
"MOOOOOOOOM! I KNOW YOU ARE SNEAKING OMEGA-3 OIL INTO MY FOOD AND I'M NOT GOING TO TAKE IT ANYMORE!"
"Sabrina, if you don't stop chanting 'Max likes GREEN! Max likes GREEN!' in that snotty voice, I am not going to do fake-burp contests with you ever again. And by the way, I can burp so much better than you! But not better than Daddy."
"If we can't go on the Disney boat, can we just go on an airplane ride to someplace today?"
"Hey! How much does it cost to buy an airplane, anyway? Could it fit in our backyard?"
"Mom, I know you killed the ladybugs we were trying to breed. I forgive you but please, let us handle the next batch."
"I think it's OK to eat chocolate ice-cream for breakfast. It has calcium!"
"Suck it, Sabrina."
"OT and PT and speech therapy are fun and all, but how about we go out and get ourselves some cold brews?"
Monday, April 26, 2010
Here's a phenomenon that's rarely discussed: parent abuse. As in, when your darling kids unintentionally maim you or otherwise do you harm. Talk about job hazards. Over the years, I've gotten whacked in the head (too many times to count), poked in the eye (ditto), punched in the lip and head-butted in my stomach. Once, Max tried to shove a Matchbox car in one of my ears while I was sleeping. Happily, I am not a heavy sleeper. Max also has this habit of grabbing one of my boobs when he's trying to get my attention, since evidently poking me or saying "Ohmmy!" is just not sufficient.
This weekend, Max ran over my right toes with his kiddie tractor trailer. I fully realize I am damn lucky that my child with cerebral palsy is able to ride a tractor trailer. But OMG, that hurt. The first three toes have turned a lovely shade of purple, so at least some good came of it (you guys know how much Max loves purple).
There really isn't much you can do in situations like this. Screaming "OUCH!" only freaks your kid out, and screaming "OH. MY. GOD. DO YOU KNOW HOW MUCH THAT HURT?!!!" will only result in years of therapy for him. So you just sort of stifle it as the tears well up in your eyes and hope that your toes or ear stay attached and that your kidney doesn't fall out or anything.
And you think, "Wow, the stuff I put up with in the name of parenthood."
What forms of parent abuse have you endured?
Photo by Ciel Photography
Saturday, April 24, 2010
This week, I attended an event for The Bread Art Project, created by the Grain Foods Foundation to raise awareness about hunger in America. For every art creation you or the kids make on the site—it's really cool, you draw stuff on toast—$1 is donated to Share Our Strength, a national organization dedicated toward helping the 17 million American kids who cope with hunger. The group's goal is to end childhood hunger by 2015.
There's so much awful stuff happening to kids all over the world that I think it's easy to forget we have a hunger problem right here in on our very own shores. This is a really simple, fun way to help—go to it and make some toast, OK?
Friday, April 23, 2010
There are a handful of sites that I think have a good variety of stuff for kids; Educational Warehouse is one of them. It has arts and crafts kits and supplies, software, books, puzzles, stickers, kids' gear and more. Plus you can search for stuff by grade, age, price, brand—pretty much every category except "Stuff that won't bore my kid after five minutes."
They also sell those great watch-an-insect grow kits. We successfully tried the butterfly one last year, but I just got the kids Ladybug Land and noticed tonight that the last ladybug had kicked the bucket. Which means that I am now a ladybug killer, besides already being a goldfish killer, and critter sites around the web are going to start featuring "Wanted" posters of me. Above, the kit I have my eye on because it looks like fun to paint and we're all fascinated by birds in this family and I don't think I will harm any birds with it.
Educational Warehouse is offering up a $100 shopping spree to one of you, plus free shipping. To enter, just leave a comment below about the kind of stuff your kid most loves playing with lately. Max is obsessed with toy trucks, Sabrina with Barbies. They are such cliches, my kids.
Note, you must leave your e-mail if yours isn't on your blog, or you will not be able to win. Not even some not-alive ladybugs.
BONUS entries: After you leave your main comment, you can leave a separate one for each of the following that you have done:
• Follow LoveThatMax on Twitter.
• Tweet about this giveaway and leave a comment with your Tweet time stamp (translation for Twitter newbies: click on the time below the Tweet, which shows you the URL). Try this Tweet: Win a $100 shopping spree for your kid at Educational Warehouse from @LoveThatMax, http://lovethatmax.blogspot.com #giveaway
• Subscribe to the To The Max feed; you can do that here, or another way, and leave a comment saying how you subscribed.
• Follow this blog on Blogger.
• Join the To The Max fan page on Facebook.
• Add my button to your blog and post a link to your blog in the comment below.
• Blog about the giveaway on your blog or website, and link back to here. Leave a comment below with the URL to the post.
• Come to our house and resuscitate our ladybugs.
From now till May 31, you can also get twenty five percent off at Educational Warehouse by entering the code Max25 at checkout. Woo hoo, my little boy is a CODE!
This giveaway is open until Friday, April 30, 11:59 EST, and is for United States and Canadian residents. I will announce the winner on this blog the next day and alert you by e-mail. Good luck!
Update: The winner is Kim! Enjoy.
Thursday, April 22, 2010
Coming home on the train last night, I spotted a guy carrying one of those green totes made of recycled material. Good for him, I thought. Then he walked by and I peeked inside. The bag was packed with styrofoam plates, which are non-biodegradable. Meaning, they end up sitting around in landfills for basically forever.
Clearly, some of us mean to be green but aren't totally there yet—our family included.
A lot of our lightbulbs aren't CFLs (compact fluorescent lights), the kind that save electricity and energy. Also, we tend to leave lights on around the house. We get cases of bottled water from Costco, even though we have reusable SIGG and Nalgene bottles. We don't buy recycled tp or paper towels. We own a gas-guzzling SUV.
OK, those are our eco-sins. On the eco upside:
We recycle. We use natural cleaning products. We do online banking and get most of our financial statements online, so we're saving some trees. I unplug the coffee machine when we're done with it and the BlackBerry when it's finished charging (appliances that are plugged in when not in use are known as "energy vampires"). We keep the thermostat on the low side in winter. I take short showers and turn off the water while brushing my teeth, and I've taught the kids the same.
So, there you have it. We're doing some green good, but we could be doing more. I know this is A Really Big Deal—I want to leave my kids a cleaner, healthier planet. And if each one of us did a little bit, it really would make a huge difference.
OK, in honor of Earth Day, I'm going to toss a bunch of our old lightbulbs and put in CFLs.
Quick: How many bloggers does it take to screw in a CFL lightbulb? Two: One to screw it in, and one to write a post about it.
Do you think I missed my calling writing material for David Letterman?
Happy Earth Day, everyone.
What kind of green stuff are you guys doing?
Wednesday, April 21, 2010
Tuesday, April 20, 2010
Here's an action shot of Max and Sabrina trying on makeup at Sephora. Max went ga-ga for the purple shadow, Sabrina seemed to prefer charcoal, though maybe she's just a leeetle bit young to do the smoky eyes thing.
I used to dread taking the kids to the mall by myself. Max wasn't easy to control, Sabrina would inevitably run off, and I'd get stressed. The one place on earth where people go to aimlessly, brainlessly wander around used to fry me. I am so not that perfectly polished mom who strolls the mall with two kids serenely by her side. I am the frazzled mom who's yelling, "SABRINA COME BACK HERE!" as I struggle to hold onto Max, who only wants to go back to the car.
Last year, I took the kids out to eat sans Dave and overcame restaurantphobia. But mallphobia was a toughie.
Vanity helped me overcome it. This Sunday, I needed to get to Sephora—I am hopelessly addicted to Caudalie skincare stuff—and so I braved it. I also knew it would be a good thing for Max, per what the neurologist said at our last visit: Expose Max to as many new situations as possible. Who'd a thunk it—the mall. Educational.
You know how I was saying yesterday that once Max got past the wig-out stage of getting into Little League, he'd adjust and be OK? I guess I have the same issue, too. Because I was dreading the trip to the mall and fully prepared to get unraveled. Except it turned out to be a really fun trip.
They had a few fancy cars on display and the kids loved checking them out. And no, I did not give in and buy Max a Porsche Carrera.
Then we threw pennies in the fountain, like all the other sucker families.
Then Max dragged me into Abercrombie & Fitch and Brooks Brothers because he spotted purple shirts and I had to keep saying, "These are shirts for Daddy, not Max" although I was tempted to get him one and let him wear it as a nightgown, since as you all know he cross-dresses on occasion. And, yes, I guess I am encouraging him by letting him try on purple shadow and pretending to give him manicures at the nail salon, and I will have to see what the neuro says about that on our next visit, won't I.
Then we went to the Apple store, played computer games and checked out the iPad. I think I'm going to get Max one, along with the Proloquo2Go program for communication.
We had a blast.
And that's how I overcame my mallphobia.
What about you guys—have you had mallphobia? Any other public-space phobia?
Shout out to my sis, it's her birthday today. Max says, "Happy Ur-Ul [Purple] Birthday!" Sabrina wishes you well and would like to know if she's entitled to get presents. You know, to help you celebrate.
Monday, April 19, 2010
Hiya. I hope everyone had a fun weekend. The kids did...well, mostly. Sabrina had a soccer lesson, declared it "boring," then had to leave midway through to come home and go to the bathroom, in typical high maintenance style.
It was opening game for Max's Little League Challenger Division. Dave called me from the field. "He's crying and he wants to leave," he said.
"Don't leave," I said.
"Hon, he really doesn't want to play," Dave (aka Mr. Softie) said.
"But he's always like this—he wigs out the first time, then he settles in, then he loves it," I said. It was like the first time Max ever went, all over again. "Please don't go. It's the only sport he plays."
"Well, OK," said Dave, dubiously, and hung up.
Max eventually did agree to put on his uniform and the hat, but he refused to bat. So Dave left early and took him out for lunch.
I felt bad that I hadn't gone, but I didn't feel the least bit bad for pushing Dave and Max to stay. It's great for Max to have a regular sport to play, and I know he'll get into it once he's adjusted. Also, not for nothing, I think it's good for Dave to take his son to a softball game.
This weekend, I also pushed Max to work on his coloring; I refused to do it for him, as I often do. And I made him brush his teeth by himself. And get into his car booster seat by himself. And I coaxed him into making Sunday night dinner!
OK, just wishful thinking there.
Lately, I have been pushing Max a lot. At seven, he's ready to be more independent. He actually does a lot more things on his own at school, like putting on clothes, feeding himself, going to the potty. But he gets all codependent at home, and we have to quit coddling him. Well, maybe just some coddling, and lots of cuddling, cause he's still so yummy.
I doubt any of our kids would be doing as well as they are today if it weren't for us pushy moms.
We give pushy moms a good name, don't we?!
photo/istock (What, you didn't think I dyed my hair blond and got muscles, did you?)
Posted by Ellen at 12:02 AM
Friday, April 16, 2010
I am so continuously astounded by Sabrina's ability to speak that I sometimes let it override the need to address her inappropriate responses.
Me: "No, you can't watch a second Spongebob Squarepants!"
Sabrina, angrily: "YOU CRACK!"
Me: Laughing at the made-up curse she has just hurled at me.
Me: "OK, it's really late. It's time to go so sleep now."
Sabrina: "No thank you."
Me: Doing everything I can not to erupt into a fit of giggles.
Me: "Stop making those spit bubbles right now. You are driving me a little crazy."
Sabrina: "Are you driving the little car or the big car?"
Me: "The big car!" I say, smiling, spit bubbles suddenly forgiven.
And so on and so on. This ordinary-kid blather seems like anything but ordinary to me. After seven years of speech therapy for Max, and the Dynavox, and all that we've done to encourage Max to articulate sounds, the ability of my other child to talk seems downright miraculous.
And so, rather than put my wise-ass little girl in her place, I am sometimes literally rendered speechless by admiration. I know that cracking up when she says something fresh is not a Good Thing, but I just can't help it.
I assume that the charm will eventually wear off, especially if she gets any more obnoxious.
I assume she will not grow up and blow spit bubbles on job interviews.
For now, I will try my best to enforce a little more discipline. But I am a fool for the love of her speech.
Thursday, April 15, 2010
I'm feeling a little weepy tonight, because I keep going back and reading the comments from the last two days' posts on the guilt we feel about our children's disabilities. Like I said, I don't place a whole lot of blame on myself, but it's clear many of you do, and that is one serious weight to bear. I'll have more to say about that next week.
Today, I have something really cool—and not at all depressing!—to tell you about. Actually, it's downright inspirational. A few weeks ago, I found out that actress Holly Robinson Peete, a mother of four and national autism spokesperson, wrote a book with her daughter Ryan called My Brother Charlie. Ryan's twin brother, RJ, has autism; they're 12. The book mirrors their lives: It's written from the p.o.v. of a girl, Callie, whose twin brother has autism, but it's helpful for any family with a child who has special needs.
I received a review copy in honor of National Autism Awareness Month and read it to Sabrina and Max several times in recent weeks. The first time, I was only a few pages into the story when Sabrina asked, "Does that boy talk?" I answered, "He can, but he doesn't do it all the time." She said, "Like Max?" and I said, "Max can also talk, he just does it in his own way." I loved that this book sparked conversation. Sabrina only occasionally asks stuff about Max or makes comments, and usually they're of the "Ewww, he's drooling" variety, but I know she's processing a lot about him in that head of hers. When I directly ask her questions she doesn't like to talk, so having a book like this is really helpful.
Max kept gesturing at Charlie and saying "MAX!" then he'd touch the girl's picture and say "Sa" ( for Sabrina). He was totally drawn to the illustrations, which are gloriously colorful, big and eye-catching.
Sabrina was mildly obsessed with why the twins in the book were dressed alike. I think she saw kindred spirits because she still only wants to wear Max's clothes.
The book is really sweet and clear; it explains, in a very basic way, that kids with autism are sometimes quiet and want to be alone—but also makes it clear that like other kids, they enjoy having a good time. And that they have their own way of saying "I love you." Which, as we all know, is very true.
I have three of the books to give away, including one copy autographed by Holly Robinson Peete, each worth $17. To enter, leave a comment below. Any kind will do. And if your e-mail is not apparent on your blog, please mention it your comment so I can get in touch with you if you win.
This giveaway is open until Thursday, April 22, 11:59 p.m. EST, and is for U.S. and Canadian residents. I'll pick the winners via randomizer.org, announce the winners the next day, and alert you by e-mail.
Thanks to Holly Robinson Peete and her daughter (above, with RJ) for a great book. They are one beautiful family.
Update: And the winners are Witkowski Family (they get the autographed copy), Pia and remarker/fcffollower. Enjoy the book!
Photo: Chris Voelker, VoelkerStudio
Wednesday, April 14, 2010
One thing struck me about yesterday's post on whether you've blamed yourself for what happened to your child, besides the outpouring of raw emotion: None of us spoke about blaming our doctors.
Candace blamed herself for not insisting she be moved to a hospital with an NICU. Jenn regretted choosing a VBAC. Chrissi spoke of doctors blaming her for not taking adequate folic acid, though it wasn't true. I got so mad when I read that.
I've never gone down that path of blaming the doctor. Dave has. The only time I have ever seen real anger coming from my husband—the most sweet, good-natured guy I know—is when he talks about Max's delivery and the hell that ensued after our seemingly perfect little baby started having seizures.
Moms have a special physical and emotional connection to the babies we carried; maybe that's why we feel responsible when something goes wrong during the delivery or afterward. But it's also such a woman thing to shoulder the guilt, isn't it?
Who have your husbands blamed, if anyone, for what happened to your child?
Photo by yador
Tuesday, April 13, 2010
I recently finished a book that's taken me months to read, This Lovely Life. A writer friend of mine knows the author, Vicki Forman, and recommended it to me. It's taken me a while to read because I sobbed every single time I read it. Literally sobbed over a book like I've never sobbed before. The author had twins, Evan and Ellie, born at twenty three weeks gestation who each weighed a pound; this is her memoir.
I have to admit, I don't typically want to read books about ailing or disabled children. I've got a few of these books on my shelf that I keep meaning to get to, but then I never feel like it. There are plenty of real-life moments where I get distressed about Max; I don't need that pain in my reading material. But I was sucked into Vicki's book, and then I had to keep going. It is so honestly and powerfully and beautifully told, its emotions all too familiar—the anger, the grief, the disbelief, the resolve, the heartbreak. It is a book worth the pain it may unearth.
One passage in particular choked me up, the part where Vicki is waiting to hear from doctors about her newborn twins and she's thinking about what she could have done differently:
I shut my eyes to the memories and began a ritual then, in my vigilance, that would accompany me during the next days and weeks and even years, one where I rewound the clock to the moments prior to my walking through the hospital's sliding glass doors that afternoon, as if by staying awake and rewinding the clock I could also change it all, have the story turn out differently. The moment I felt those dull pains, earlier that morning. I call the hospital before noon, I don't wait until I am bleeding. Or earlier. Saturday night. We'd been out to dinner and I'd been almost unable to climb the steps to the restaurant. Why didn't I turn to my husband then and say, I think I need to go to the hospital? Why didn't I recognize my pain as signs of labor?
This passage took me to a painful place, one I hardly ever go to. The place where I wonder if anything I did caused Max's stroke. Factually, what caused it was a loss of oxygen during birth. But that hasn't stopped me from thinking the worst. One thing in particular stands out.
In my seventh or eighth month, I spray-painted the medicine chest in our bathroom. The label said you shouldn't do it if you were pregnant. But I was in extreme nesting mode, determined to have the house "done" before Max came along (we moved in here in August, he was born in December). I was super-prego, full of energy and enthusiasm and excitement. I was in glowing good health. And so I repressed my better judgment, put on a face mask, opened the window and I spray-painted that chest. It took maybe five minutes. As soon as I was done, I regretted it. If anything happens to the baby, I thought, I'll know it was this. Yes, I thought that. But I didn't really think anything would happen. Certainly not anything as insane as a baby having a stroke, a bilateral stroke that's the cause of Max's cerebral palsy.
A doctor I once met with told me the only other moms he'd met whose babies had strokes were moms who'd smoked crack during pregnancy. And I thought, Well, that pretty much absolves me of any responsibility. I also thought, Go to hell for telling me that.
I know the five minutes of spray-painting did not cause Max's stroke. I told our neurologist about it years ago, and he basically said it was crazy talk. It is not something I regularly ponder or feel guilty about. But it is the one black speck of doubt in my mind and it will always be there, no matter what the facts are.
I hope, I really hope, none of you blame yourselves for your children's issues.
Photo by leonrw
Monday, April 12, 2010
...going to the beach and getting Max a new purple bucket
...watching Sabrina swinging
...Max enjoying the water
...Sabrina riding on Dave's shoulders
...Max going down the slide
...Max on the swing
...Max trying a teeter-totter for the first time ever
...when your mom lets you pull your purple shirt from the laundry and wear it for the second day in a row.
What blissed you out this weekend?
Saturday, April 10, 2010
It's Friday morning, and Max and I are hanging out in town. We have ice-cream (yes, I let my skinny boy eat ice-cream at 10:45 a.m.), browse the kids' section in the bookstore, locate every single purple item in the toy store. Then we pass by the nail salon and Max dashes inside. It's completely packed.
Max is mesmerized by the sight of a lady who is getting tips put on her nails; the manicurist is using some sort of little drill. Max points to himself. "Max, you want that?" I ask. "YES!" he says. Go figure; I am not a tips type of girl but I end up with a seven-year-old boy who wants them.
Max walks over to an open chair and stands there, expectantly. I scoop him up and seat him.
"Is it OK if I pretend to put fake nails on him?" I ask the guy at the counter, who is staring at us.
"What?" he says.
I realize there is a bit of a language barrier. I say it again, slowly: "Can I pretend to put nails on him? Not for real?"
"What 'pretend' mean?" the man asks.
"OK, listen, I will just sit on the chair and PLAY!" I say, and before the guy can say another word I plop into a chair, grab a bottle of nail polish, open it, and make like I'm brushing some onto Max's nails.
I figure this guy will not call the cops on some crazy lady who is pretending to put nail polish on her little boy.
I figure that pretending to put polish on Max will not trigger any lasting gender identity issues.
Of course, within a minute or so Max has had enough and he jumps off the chair. He waves bye to the guy and runs out the door.
"Bye!" I say, and scoot out after him.
Wherever Max leads, I will follow. Although you can bet I will not be walking by any strip clubs with him.
Friday, April 9, 2010
Hell has officially frozen over, because I have a recipe to share (some of you may know that I am not that big on cooking, UNDERSTATEMENT ALERT). It's for a really, really good gazpacho. While I didn't actually create it myself, I think you should all be duly impressed that I have a recipe to share. So what if it's for a cold soup.
I've had gazpacho on the brain ever since a new Twitter pal, Danielle, asked what people's fave healthy foods are. I mentioned gazpacho, edamame, peaches and Hostess Snowballs, the pink kind, because as we all know they are chock full of vitamins and minerals and fiber and Omega-3s. Then today, I had lunch with my friend Erin (she blogs for Parenting, check out her posts!) and the waiter said the soup special was minestrone. "Do you have gazpacho?" I asked. They didn't, but we all agreed gazpacho rocks.
I'm going to be making some over the weekend. The recipe is from a restaurant in Palm Beach whose name I can't recall. Dave and I had dinner there a few years ago when we were on vacation, and I was so wowed by the gazpacho I begged the waitress to get the chef to share the recipe. He did. Enjoy!
So, what food are you obsessed with lately, healthy or not?!
REALLY, REALLY GOOD GAZPACHO
1 large cucumber, peeled, seeded and finely diced (1/4" cubes)
1/2 green pepper, finely diced
1 small jar pimientos, finely diced
1/2 large onion, (sweet or spanish), finely diced
3 tbsp. parsley, finely chopped
2 tbsp. fresh basil, finely chopped
1 large clove garlic, minced
1 cup Wish-Bone Italian Vinaigrette Dressing
6 large tomatoes, peeled and chopped or a 14-oz can of tomatoes, chopped
1 8-oz can tomato juice
Salt and pepper to taste
Sour cream, croutons and cucumber spear for the garnishes
Combine diced cucumbers, green pepper, pimientos and onion in a large bowl with parsely, basil and garlic.
Mix in Italian dressing.
Add tomatoes to soup along with the tomato juice; if using canned tomatoes, first strain the liquid from tomatoes.
Salt and pepper to taste.
Puree in blender.
Chill until ready to serve.
Makes a lot.
Photo by JungleFrog
Thursday, April 8, 2010
I can't remember when I first tried Fat Witch brownies, but I do remember thinking something along the lines of: "I am in love." These are, hands down, the most decadent brownies I've ever had. While a lot of brownies are overly moist or overly dry, Fat Witch brownies are just right. They're rich, melt-in-your-mouth good. And the name makes me smile; Skinny Saint brownies just wouldn't have the same allure. Not that these are going to make you skinny or anything.
The good people of Good Witch are offering up two tins of brownies, each worth $45. They contain 9 Fat Witch Babies (1.5 oz. size), 9 Blonde Babies (a chocolate chip cookie in brownie form), and 9 Walnut Babies. If someone in your house is allergic to nuts, you can ask for all Fat Witch Babies.
To enter, leave a comment below saying what your favorite kind of brownie is. Me, I'm a purist—I like straight up chocolate.
BONUS entries: After you leave your main comment, you can leave a separate one for each of the following that you have done:
• Follow LoveThatMax on Twitter.
• Tweet about this giveaway and leave a comment with your Tweet time stamp (translation for Twitter newbies: click on the time below the Tweet, which shows you the URL). Try this Tweet: Win a tin of 17 gourmet Fat Witch brownies from @LoveThatMax, two winners, ends 4/15. http://lovethatmax.blogspot.com #giveaway
• Subscribe to the To The Max feed; you can do that here, or another way, and leave a comment saying how you subscribed.
• Follow this blog on Blogger.
• Join the To The Max fan page on Facebook.
• Add my button to your blog and post a link to your blog in the comment below.
This giveaway is open until Thursday, April 15, 2010, 11:59 p.m. EST, and is for U.S. and Canadian residents. I'll pick the winners via randomizer.org, announce the winners the next day, and alert you by e-mail.
Note, you must leave your e-mail address if yours is not visible on your blog.
Note, if you choose not to share these with your husband or kids, I won't tell.
Update: The winners are Sue14625 and Em. Hooray, and enjoy! Don't 'em all at once! Uh-oh, I'm starting to sound like a mother.
Wednesday, April 7, 2010
We are headed home from Disney World. The line at airport security is impossibly long, and I know Max is going to wig out because crowds unnerve him. In situations like this, I have been able to explain to a staffer about Max's special needs, and they have let him go through the employee security entrance. I approach the woman stationed there, and explain that I have a child with special needs who gets upset by crowds.
"You can't go in here," she says. "Do you have any suggestions?" I ask. "You can walk over to Gate B, where they have a family entrance," she answers. "Wait—you want us to walk all the way over to another gate? I have a feeling that might be just as crowded." She stares at me. "Well, that's your choice," she says, matter-of-factly.
I walk away and spot a woman with a Transportation Authority badge headed toward us. I stop her and tell her about Max, not mentioning that we have just been turned away from the employee entrance. "Come with me," she says, and we head right back to the employee entrance. I am feeling a little giddy at the thought of seeing Ms. Stonyface again. "This family needs to go through here," the Transportation Authority woman says, adding something I can't hear, and then she waves us through. "I have a child with autism," she says to me, quietly. "I know how it goes."
This is the sisterhood of the special needs child, that instant connection with someone else who has a child with disabilities.
It is a look from the other mom at a birthday party where your two kids are clearly the only ones with challenges.
It is the conversation you so easily strike up with the other mom in the waiting room at the developmental pediatrician/neurologist/[fill in the blank] specialist.
It is finding out that another woman in your network of work friends also has a child with special needs, seeing her for the first time in years and hugging her tight.
It is going to an event for kids with special needs and getting excited for other moms when their kids do something awesome because you know that giddy feeling of "YES. HE. CAN!!!!"
It is finding out that someone else in your neighborhood has a child in Early Intervention and trading notes when you bump into each other in town.
It is being asked by a friend to call one of her friends who has a child recently born or diagnosed with special needs, calling, and talking like you've known each other for years.
It is being in a restaurant, mall or park, noticing another mom with a kid who is handicapped, and suddenly feeling less alone in a sea of typical parents with typical kids.
It is the bond I share with all of you.
This is the sisterhood of the special needs child.
Got a story to tell?
Photo by idg
Tuesday, April 6, 2010
Monday, I took a shower at 2 p.m. I didn't expect it to be a revelation, but as I was shampooing and scrubbing and shaving and pumicing, I realized how awesome it felt to be in the shower in the afternoon.
I haven't had an afternoon shower in a really long time; it's not part of my routine. I typically only do morning showers.
I wasn't a routine-loving person before I became a parent. But kids, they love their routines. Especially Max, a boy who feels most happy and most comfortable when he knows exactly what's going to happen and when. We have wakeup routines, meal routines, drink routines, car routines, Purple Max routines, play routines, potty routines, bedtime routines, routine routines.
The routines tend to make life feel like it's speeding by. Sometimes, it's hard to tell one day from the next, one week from the next. Sometimes, routines make me feel like the settled-in, suburban mom that I am; they make me acutely aware of the passage of time and that I am getting, gulp, older.
My friend Wendy came to visit this weekend; while she was here, our neighbor, Greg, dropped by to ask about borrowing the power washer. I had to explain to Wendy, who's from the city, about the wonders of the power washer and why I'm always using ours. "When did we get this old that we're standing around discussing power washers?!" she asked after Greg left. Yep.
How about you—do you like routines? Or do they sometimes feel so...routine?
Photo by bluetel
Monday, April 5, 2010
I've been thinking a lot about our Disney trip, both because we had such a fantastic time but also because it's clear I keep sabotaging my emotions by building up too-high expectations about Max and how he'll enjoy himself. I wanted him to have that complete Disney experience since that's what I thought would make him happy. And I want to make this child deliriously happy, because deep down I feel he deserves it for all the challenges he's been handed in life. I also think it's his right to delight in Disney the way other, typical kids do.
These are the feelings I packed with me for our trip to Disney World.
I've written before about learning to appreciate the small stuff in life, inspired in no small part by Gretchen Rubin's blog and book of the same name, The Happiness Project. Generally, I do appreciate the small stuff. But when it comes to big events and big trips—let alone Disney World, the mother of all kiddie trips—my hopes and expectations soar, despite myself.
On Sunday, I was looking through vacation photos yet again. And I discovered something I hadn't seen before: all the little things that made Max (and Sabrina!) happy.
Like staring out at the sea
Coloring in the cabin
Getting a wagon ride from Dave
Dumping sand out of a bucket
Eating an ice-cream cone
Riding the monorail
A new purple bowl. A staffer at the hotel had been putting out bowls for an activity; Max grabbed this one and wouldn't let go, so she gave it to him. Max carried that purple bowl all over the place; he even got Goofy to pretend-eat out of one.
Enjoying the airport train
I realize, in the end, these seemingly minor moments of joy were just as blissful for Max as the major thrills I'd hoped he'd experience from the rides. It was a magical experience for him. Max's own kind of magic. A low-key, purple kind of magic.
Excuse me while I go adjust my reality meter once again.
Friday, April 2, 2010
The adventures continue and, yes, I have turned into one of those parents who cannot stop showing you photos. On Day 2 we hit Epcot. Max still wasn't into the rides. Not the adorable The Seas With Nemo & Friends ride, not even the Test Track car ride, though he did like checking out the GM cars on display.
Sabrina test-drove this one.
Both kids enjoyed the nearby "car wash." Sabrina decided to take a quick shower in the mist.
We roamed around the World Showcase, where Max fell for a purple dragon puppet in China and the kids downed pasta and gelato in Italy. Dave found a big old turkey leg to gnaw on, so he was content too. Great mystery of life #7329: Why do men like to gnaw on gigantic turkey legs?
Alice was lovely.
Jasmine, too. This time around, Max did not try to impress any of the ladies by blowing his nose.
There was a gorgeous Flower & Garden Festival happening, with amazing displays like this.
Next, we took a bus we over to the Animal Kingdom Park, where we all thoroughly enjoyed the safari. We did it at 5 and it was nice and calm, with lots of animals roaming around.
Along the way, we were privileged to witness the rare and wondrous spectacle of...a lion taking a dump. I chose to not capture that moment on film, but here's the homeboy himself.
After, Max played the bongo drums as Dave sang a song about a lion making a doody, to commemorate the occasion. Even now, all Dave has to say is, "Lions make big doodies!" and Max cracks up.
The following day, we headed over to Hollywood Studios and went right to the Animation Courtyard. There's a fantastic indoor area here that's perfect for kids with sensory issues; it's quiet-ish and features a Digital Ink & Paint studio. You can color in characters on-screen, or even tape voiceovers for assorted Disney scenes, like from Snow White and The Seven Dwarves.
There were character meet-and-greets, too—the Incredibles, the crew from the movie Up, and Wizard Mickey Mouse. Generally, the lines were shorter than we'd seen elsewhere, another nice perk about this area.
Then we went on The Great Movie Ride, which takes you through decades of movies, complete with real actors and a loud shooting scene. Max wailed. Eeek. Baaaaaad Mommy and Daddy. Then we tried Toy Story Mania!, a superfun ride that involves putting on 3-D glasses and whizzing in a cart through a gallery of games where you shoot down moving targets. We knew Max was not going to be into it but we wanted to give it one more shot. Again, he wailed.
That was that for rides. We headed back to The Magic Kingdom and did more laps around Tomorrowland's Indy Speedway.
Sabrina's idea of a great snack: a pickle and an ice-pop. There were healthy snacks to be had, including pieces of fruit and bowls of fruit salad.
On our last day, we hung out at the hotel and enjoyed the pool and the water slide. Max would literally not let go of the purple Mickey Mouse balloon we'd bought for him. But one of the lifeguards asked if he could bring it to the front desk to hold for us, because if the balloon got loose and made its way to the savannas, an animal could feasibly choke on it. We totally spaced and left the balloon at the hotel. Baaaaaad Mommy and Daddy, redux.
So, that was our trip to Disney. I was a little disappointed that Max didn't like the rides, both because I wanted him to enjoy them and because I wanted to enjoy them with him. I've gotten better over the years about trying not to have preconceived ideas about how Max would enjoy an event or vacation. But big trips breed big expectations.
The truth is, most of the rides are too much for him at this point (I loved Felicia's idea yesterday about letting Max view rides on YouTube ahead of time before our next trip, to help prepare him). In the end, though, Max had a wonderful time hanging with the characters, driving his car, taking in all the sights and just being a kid. And I know he had a great time because Max literally cried when we pulled up to the driveway at home; he wanted to be back at Disney.
Posted by Ellen at 7:30 AM