Hot cocoa for Rett syndrome.

Months ago, a good friend's daughter (who has a sister with Rett syndrome) came up with the brilliant idea to have a hot cocoa stand to raise money for the International Rett Syndrome Foundation. She and her family and friends built a real homemade stand, then decorated it with rainbows, etc. And finally, a few weeks ago, we, the parents, were able to pull together the rest of the details: baking cookies and brownies, making hot cocoa, putting up signs, and spreading the word.

The result? Drink for a Cure, so named by 9-year-old organizer Simran. Only one of her many big ideas. And it was a success!



The real stars were the Rett siblings, Calvin and Simran. They were a bit shy at first, but by the end of the afternoon, they were flagging down passers-by and, um, somewhat aggressively passing out fliers about Rett syndrome. But no one was too put out because they were being attacked by cute kids with a good cause. In the end, we raised something like $1,100, including some online donations.

Calvin and Simran hard at work:



Violet had tons of fun, too. Here she is with her Daddy and some pals:

Pinewood Derby...at last!

Calvin joined Boy Scouts in the fall, and one of their most popular activities is the Pinewood Derby. The boys (with a lot of help from their dads--and some moms) build little cars out of a block of wood and then race them down a track. That is a very oversimplified explanation of the whole event, because in reality there are a ton of rules and regulations about the way your car can look, the types of wheels you can have, the weights you use. And then there are all sorts of creative ways to make your car the fastest while not exactly bending the rules (not that we tried any of that, of course).

And apparently, there is whole Pinewood Derby industry, as I learned when I was sent to Michaels to get new wheels for Calvin's car. I thought it would be a simple task, and asked the lady working inside where the shelf of derby car kits were located. She paused, smiled, and led me to a whole section devoted to the little boxy contraptions, reminiscing about how different it is now compared to what it was like when her 30-year-old son was a Boy Scout. Now, you can buy all sorts of prefab shapes that you can then just paint as you would like. There were also stickers and designs and wheels in all sorts of neon colors, although Noah later explained that those are forbidden in Calvin's pack.

He and Calvin opted for their own original, classic design, and then added a little Lego driver man (Calvin's idea). They worked on this car in a little makeshift workshop in our the garage for several hours each weekend, and the work looked something like this:



And the car looked like this:



The event was canceled two weeks ago because of snow, but finally took place this week. I thought I would just join the boys for the beginning of it, so I could see all the cars and the start of the race. The cars were amazing. Most of them had your pretty basic race car look, but a few had some more creative shapes, like one that looked like a giant Lego man and another fashioned like a rolled-up Washington Post. There was another featuring a Kiss logo with (I think) Gene Simmons as the driver?? That had to be some dad's idea:





I only planned to stay for the first few minutes, but I ended up getting completely sucked in. There was a huge crowd there, with boys and their parents each cheering for their own cars. They were egged on by a jolly announcer in a Scout uniform who told them that the louder they yelled, the better their cars would perform--guaranteed. As a result, it was bedlam. And it was a little scary how into we all got.

The announcer was great, calling out the cars in a fun, fast-paced way. "In the first lane, we've got Mr. Berlin, going against the 0-man in lane 2." That kind of thing. The kids loved it. And so did their parents.



Calvin's car did well, winning several races, but unfortunately did not place. He seemed excited though and maybe just a little overwhelmed.

Checking out his car at the end and plotting modifications for next year:

D-Day Revisited (sorta)

Today is the 2-year anniversary of Violet's diagnosis with Rett syndrome. I don't really know what more to say about it. Last year, I dreaded the day as it approached, some ominous anniversary hanging over our heads. We were supposed to go to the birthday party of the 2-year-old daughter of some very dear friends. I declined, explaining I just didn't know what I'd be able to do that day, but I knew I couldn't go to a little girl's birthday party. Our friends graciously understood. And to be honest, I can't really remember what we did that day. I think we just had a quiet day at home, just the four of us. I just remember I was so glad when it was over.

It wasn't much different this year, except that I didn't really anticipate the day quite as much. It is almost 6 p.m. and Noah and I haven't even discussed the fact that today is that day. I'm not even sure he realizes it. We've been too busy doing what we do most Sundays: Tending to children while doing odd chores and trying to relax. We had donuts for breakfast, read the paper, talked about Star Wars with Calvin, went to lunch at a great pizza place where we discovered Violet loves suppli (yummy little cheesy rice balls). I guess we fed her way too many, though, because she threw up when we got in the car. Noah and Calvin went to the auto show. I went home with V, Grammy helped clean her up, and here we are.

I know I will never forget that day, the day we found out our girl's life would never be as expected. Nor would ours. I was sitting in my little Subaru, waiting to pick up Calvin from preschool. I had a babysitter who watched Violet on Friday afternoons, so Calvin and I could go to lunch and have some one-on-one time. I was trying to figure out what we would do when my phone rang.

We had gone through months of testing for Violet for various disorders, and they'd all come back normal. So I wasn't surprised to see the neurologist's phone number, and I wasn't particularly worried. She asked if it was a good time, I said it was. She told me the results of some kind of routine bloodwork we had done, all of which had come back normal. We had taken the Rett test only the week before, but we were told not to expect results for a month or so, so I wasn't really expecting any results. I sat and watched Calvin and his classmates start pouring out of the preschool building. The doctor started talking about Rett syndrome, about all the reasons she had thought Violet didn't have it. And then she said, "Unfortunately, Laura..." And I knew.

It is hard to describe that moment of realizing something or being informed of something that will forever change your life, and your daughter's. I could hear my heart pounding in my ears, and I thought it would explode and I would throw up all in one moment. I remember I just wanted her to stop talking. I wanted to throw my cell phone out of the window. I wanted to run.

But at the same time, I saw my smiling four-year-old running to the car, chaperoned by his teacher, who by now had realized I wasn't getting out to come get him. His backpack bobbed along behind him. It was like everything was normal outside of the car. But inside, our world had forever shifted.

So I will never forget these details, but I suppose I don't really revisit them as much. I dreaded the anniversary of that day last year because, I guess, I had expected some monumental change to happen in one year. That we would have accepted Rett syndrome. That we would have adjusted our life as need be. That we would have a plan. We didn't.

We still don't really. We have made progress, I guess. And there have been changes, for sure--some of them good, some of them just different. Violet started school, and it seems to be going well. We know a lot more about Rett syndrome, although we still have lots to learn. We have connected with a network of specialists. We've met a lot of amazing families who are dealing with the same things we are. We are trying to get Violet a computer to help her communicate. But she is also getting bigger and not yet walking, so we are constantly reevaluating how to transport her, assist her PT, get her dressed in ways that are comfortable for everyone. It is still hard to see typical girls her age.

And these are things we will probably have to deal with in one way or another for the rest of her life. So I guess I've stopped expecting big breakthroughs and am trying to accept the ebb and flow of things. There are a lot of good things that happen in our life, and a lot of not so good things--some related to Rett syndrome, most of them not. Taking stock can be difficult and not always helpful. I am trying to focus on Violet's individual pace and internal developmental calendar, and not watch the years go by, expecting anything specific. I am trying. But it is very hard.

Calvin's half-birthday.

Today is Calvin's half-birthday. We remembered this last night while we were having dinner. We mark the occasion because, some years, when I'm really organized, I will send in a treat he can share with his classmates to celebrate his half-birthday, since his real birthday is in the summer. Having a summer birthday myself, I know how June-July-August babies get screwed when it comes to the whole cupcake-and-crown celebrations in school, and I wasn't about to let that happen to my kid:)

Well, this is not one of those years when I am really organized. And conveniently, there was no school today anyway. So instead, we celebrated by going to the dentist for check-ups for both Calvin and Violet, getting Calvin a haircut, having lunch out, and then coming back home for an intense game of Wii Lego Star Wars, The Complete Saga--Calvin's pick, of course. (And that is how he always refers to the game, with the entire title.)

This may not sound like such a fun semi-birthday celebration to you, but Calvin actually LOVES going to the dentist. He is the happiest, most relaxed dental patient I have ever met, which is completely baffling to me because I have a bit of a dentist-phobia. Today, he brought in his own sunglasses to shield him when he kicked back in the chair under the bright light. Then he laughed and chatted and charmed the dental hygienist. The kid did not get that from me.

What he does not like, though, is getting his hair cut. He's just too ticklish. And today, he could not sit still so our favorite endlessly patient hairstylist Jessena nearly jabbed him with the scissors several times. (Accidentally, of course, because he wouldn't stop moving.) I had to intervene, holding his shoulders down, trying to distract him with a serious discussion about the Scooby episode we were watching. (Yes, we were at the Cartoon Cuts.)

But we muddled through, and came out the other side with one slick-looking boy. See for yourself...

Before:




After:




One passerby even commented that he looked like a young James Dean, I think mainly because he was sort of casually slumped against the wall and had the lollipop stick hanging out just so:

Lazy getaway.

Noah and I took advantage of the three-day weekend this week for a little getaway to a B&B in Virginia. Out in White Post, it was tucked in alongside farmland and wineries and cute little roadside markets. The weather was pretty cold and crummy out though, so we didn't do much exploring, which was fine by us. It was probably 24 of the laziest hours of our life. We went into our room, started a fire, unpacked our books, and only left to eat dinner and retrieve some homemade hot cider, both of which were located in the rooms just below ours. It was perfect:





This was the view from our window in the old stone manor house. It sure looked picturesque (and cold) out there. Not that we ventured out, but it was nice to admire from inside...

Violet is contagious.

Now it's Violet's turn to stay home sick. I think she's just got a bit of a cold. But she was up last night coughing and didn't sleep well (and neither did I!), so I thought I'd keep her home so she could rest up.

So she's had a relaxing morning: a long breakfast, some TV time, and then snuggles with Grammy. And now, along with the cold, what I think she really has is a case of the giggles. And it is contagious:

Sick day and skiing (but not at the same time).

Calvin is home sick today, again, for the third day in a row. He's had a fever and a little bit of a cough, but no other symptoms. He actually is one of the cheeriest sick kids I've ever met. When you ask how he feels, he says, "Great!" He's been eating fine and was literally break dancing on the floor the other day (I think thanks to a nice dose of Tylenol), but still the fever, so he's home.

At age 6, I think he is finally catching on that this sick-day thing is a pretty good deal. On Tuesday night, he started with the fever, so I told him he probably wouldn't go to school the next day. Still, he was up at 7, got himself dressed and came into our room, ready to go. I reminded him he wasn't going to school, and he said, pouting a bit, "But Wednesday is my favorite day of all. We have P.E.!" And, "Someone in my class, Alexandra, is having a birthday." I had forgotten these are some of the social highlights of a 6-year-old's schedule. But still, I held my ground, and home he stayed.

By last night, after he had spent hours playing with his Christmas toys, reading Star Wars books, playing card games with Grammy, watching WAY too much TV, and playing on the computer, he said, "It's kinda fun to be sick." Uh-oh.

Here he is during a hot game of the classic, age-old Redskins/Cowboys checkers. (I had to be the Cowboys, of course.)





A week ago, Calvin was in good shape, health-wise, so Noah took him skiing for the first time. They took a day trip to West Virginia and signed up for a little father-son class. Noah was pretty excited. I was worried Calvin would hate it and they would both be disappointed. But Noah said they both had tons of fun and Calvin did great. He didn't mind when he fell a few times, and even enjoyed doing "banana peels," as their instructor called them (which is just a nice phrase for when your skis slip out from under you and you fall on your tush.) And now Calvin has been downhill skiing exactly as many times as I have, and is probably way better at it.

Here they are: