A Super Ordinary Boy

Today Dylan looked more or less like all the other second grade boys on the school field trip, with his gap-toothed grin, energetic legs, sweaty head and dirty fingernails, digging through the dirt for fossils at the Museum of Life + Science. In fact, most days when we see him, he's just like all the other kids.

Except for last summer, when we had to go to Duke Hospital to see Dylan. Then, for the first time since 2007, he looked more like a patient than the kid down the street. For two weeks, while a team of nurses and doctors poked and tested and treated him for an infection, we were reminded that in spite of looking and acting and generally being like all the other kids, Dylan has cystic fibrosis.

As CF patients go, he's been pretty healthy, according to his mom -- but his parents work hard to keep him that way. Each day, he takes more than 20 pills, three nebulizer treatments and two airway clearances -- and that's when he's well. If he has a lung infection, he can spend up to two hours a day doing breathing treatments. After his two-week hospitalization last summer, he spent another eight weeks at home on IV meds -- that meant no swimming in the pool for all of July and August.

So stop for a minute and imagine your daily routine with your kids.

Think about how full each day is and how often you're running late for school or work in the morning because they can't find their shoes or didn't remember their homework or need you to make an extra snack or are just generally being pissy. And think about how hard it is to get your kids to bed on time because there are always a hundred things, both real and imaginary, that suddenly have to be completed before you can get them to go to sleep.

Then imagine that in the midst of all that everyday chaos, you've also got to work in five different breathing treatments and convince your child to swallow 20 pills. Every. Single. Day.

Now if you're Dylan's mom, you don't complain about any of that. In the 7+ years that I've known her, not once have I heard her complain. Instead, she says things like this:

"That is a lot for a little guy to have to handle and as a mom it is hard to watch him having to endure all he does everyday. Dylan has made me a stronger person. He never gets a day off. I will continue to do all I can to keep him healthy until a cure is found."

On Saturday, my family and I will join with the rest of the Super Dylan Nation in the Cystic Fibrosis Foundation's Great Strides Walk. We will wear our red shirts and wind our way through downtown Raleigh for 3.1 miles. We will marvel at how our little friend with cystic fibrosis can run the whole 5K. We will celebrate all that his family does to keep him healthy.

And I will also say a quiet prayer of thanks that we can do something -- however small -- to help make CF stand for "cure found."

Click here if you'd like to join us on the walk, share your support through a donation to the Super Dylan team (no gift is too small!), or learn more about the CF Foundation.

Need more convincing?

• Five reasons why you should donate to the Super Dylan campaign
• For Super Dylan's Mom
• "The Longest-Lived Survivor"

One Amazing Night

On any given day, I probably have three blog posts lurking in my head somewhere. Unfortunately, on any given day, I probably have about two minutes to spend actually writing them down.

And so over time, those posts collect in my brain and my fingers and get all tangled up until it's too hard to write once I finally do carve out some quiet time. The topics become too important or involved or complex to throw down in a 15-minute burst, and so I keep putting them off. It's kind of like how I don't call my best friends who live far away because I want to be sure I really have time to talk to them and of course I never really have that kind of time and so I keep not calling until it would probably take three days to cover all the things we want to talk about and we end up with a seven-minute cell phone chat in the carpool line instead which is totally unsatisfying and yet still better than nothing.

Phew.

So tonight I'm starting to unpack that very crowded brain, beginning with the thing that's probably hardest to put into words. Which is funny, I guess, given that the whole event was about showcasing writing.

Last week I had the incredibly good fortune to share a stage with 14 other local writers as we gave motherhood a microphone. The inaugural Raleigh-Durham edition of the Listen to Your Mother show was simply amazing -- and I say that not because I was in it.

It was amazing because it happened -- thanks to much hard work by Marty, KeAnne and others. It was amazing because so many people bought tickets that the show sold out the day before -- the audience was filled with friends and family who made me feel important by their presence. And it was amazing because of the live connection that I didn't know I craved until I was standing on stage.

It's one thing to sit here at my laptop, spill all these stories onto the screen and hit publish. Sometimes people will leave comments or send a tweet, occasionally someone I know will reference a post in conversation. For the most part, it's just me and the silence of my own writing.

So it's another thing entirely to stand in front of hundreds of people who are laughing and giving me real-time feedback as I read my writing aloud. I probably should have been nervous -- my pale face in the spotlight with nothing but a music stand to shield me as I confessed my story. Instead, I just felt connected, like I was part of something, like I was where I belonged.

The next day, I couldn't believe I had to go to work and make lunches and do carpool and the ordinary bits of things like nothing had happened. But I suppose that's just like the miraculous ordinary of motherhood.

When the nation LTYM site posts the video from the show on their YouTube channel, I'll let you know. In the meantime, I just want to say thank you to my friends and family who supported me with good wishes before and after the show, to my sweet husband who greeted me with two dozen (!) roses in the auditorium, and to my fellow cast members who made the whole amazing night possible -- I don't know about the rest of you, but I'm ready to take this show on the road.

Links to other blog posts from the LTYM-RDU cast following the show:

• Dellabee and Me
• Musings of an (In)sane Life
• Dirt and Noise
• And Just One More
• Baby with a Twist
• (hopefully more coming soon!)

You're Supposed to Smile and Say "Thank You"

Compliments are tricky things, both to give and to receive.

Sometimes we put down ourselves as we lift up someone else -- if only I could be as talented as you. Often we deflect compliments -- this old thing? I got it on sale. Occasionally we give back-handed compliments -- you don't sweat much for a fat girl.

I find I'm better at giving them than accepting them. Not sure if it's a Southern thing or a female thing or just an insecurity thing -- but I always find it hard to just look the person in the eye and say, "Thank you." Thank you for noticing something nice about me and saying it out loud.

So reading my friend Marty's profile post about me as a cast member for the Raleigh-Durham Listen to Your Mother felt weird -- but also a little awesome.

Click to read her profile of me.

So thank you, Marty. Now I'll just be over in the corner blushing.

If you'd like to buy tickets to the show -- this Wednesday, May 8 at 7:30 p.m. in Raleigh -- click here. And hurry -- there aren't many tickets left. Listen to Your Mother is a national series of live readings by local writers in celebration of Mother's Day. 

Me, Only Louder With Friends

Some of you who read this blog have never met me outside the pages of the Internet, but many of you know me out in the real world in one way or another.

So when I found out I'd been selected for the cast of the Raleigh-Durham area Listen to Your Mother show, I felt a little weird about asking my friends to buy tickets to the show. Listen to Your Mother is a national series of live readings by local writers in celebration of Mother's Day -- this year launches the first show for Raleigh-Durham, one (okay, technically two, and actually lots more if you count Chapel Hill, Wake Forest, Cary...) of 24 cities across the nation to participate for 2013.

Sure, the show is part of a cool national project -- but why would people who have to listen to me ramble for free want to pay money to listen to me read into a microphone?

Then I went to the first rehearsal for the show and heard the other 14 cast members share their stories about the good, bad and ugly in motherhood. And as I alternately laughed out loud and choked back tears, I lost any hesitation about publicizing this event.

I realize you probably don't know all 13 women and our lone brave man in the cast -- but you can meet them online now. Then buy your tickets to the show, where you'll spend a little over an hour feeling like you've just sat down for the most well-written coffee chat that you've even been to with your new crowd of favorite friends. Pinky promise, you won't be disappointed.

If you'd like to buy tickets to the show -- May 8 at 7:30 p.m. in Raleigh -- click here. 

Eye of the Beholder

Throughout my life, my mom has always told me that I'm pretty. That's a great thing for a girl's ego -- except that often my mother does it in the context of disparaging herself at the same time.

"I wish my hair were shiny and beautiful like yours -- mine is so gray and flat now."

"You have such a nice figure -- I can't wear dresses like that anymore."

"Your teeth are so straight and white -- I've always hated my teeth."

The truth is that my mom is pretty -- and I look a lot like her, so it must be true. She's also 28 years older than I am, so I have a bit of an advantage.

Her habit of putting herself down while simultaneously lifting me up always makes me self-conscious. It's not a competition, I want to tell her. We are always our own worst critics (see the latest from Dove's "Real Beauty" campaign for more on that one). We're both getting older and changing, but I like to believe that neither one of us looks our age.

Then I look at Pippi. And suddenly I see what my mom sees when she looks at me. She's perfect and gorgeous and way more amazing than I am -- but unlike me, she has always looked more like her dad than her mom.

Until today.

This afternoon, Pippi and I went to our favorite salon so that she could get a summer haircut and donate her beautiful, shiny, sun-streaked ponytail to Pantene Beautiful Lengths. As Stephanie snipped and trimmed a sassy little bob and Pippi winked and grinned at herself in the mirror, I watched my long-haired daughter start to look just a little like me for the first time.

Looking at her wearing my haircut -- and grinning from ear to ear -- made my heart melt just a little. When I texted pictures to my husband so he could see the new do, he texted back, "Beautiful! She looks like you now ;)" -- and that made me melt just a little bit more.

It's a funny thing about motherhood, how each stage makes me understand something about my own mother. I'm starting to get it, what she sees when she looks at me. When I look at Pippi, I know she's prettier than I am -- the difference is that she's already got such a big head (literally and figuratively), that I'll be keeping that opinion to myself.

Click here to see the 1977 photo of my mom and me in our matching (Dorothy Hamill) haircuts, along with photos of Pippi's first haircut.

On School Buildings and Why You Should Care

Powerful teaching and learning.

That's what I want my children to experience at school. That's what I want all children and teachers to experience at school. That's what I want the school board to focus on.

So if what I want is a Board of Education talking about powerful teaching and learning, then why do I care if my local school board retains control of school buildings? Because school facilities cannot be separated from academics -- an adequate and appropriate learning environment is a critical element of student success.

Senate Bill 236, sponsored by Sens. Neal Hunt (Wake), Tom Apodaca (Henderson) and Pete Brunstetter (Forsyth), would give county commissioners the authority to assume responsibility for the design, construction, maintenance, renovation, acquisition and ownership of school properties. Currently in North Carolina's 100 counties, the county board of commissioners provides the funding for school property purchases and construction (because they possess taxing authority and the school board does not), but the county board of education is responsible for the design, construction and ownership of school facilities. This divide, sometimes awkward and often contentious, is unusual -- more than 90 percent of school districts in the nation have fiscal independence (meaning they have taxing authority to fund their own budget).

The proposed legislation would allow all North Carolina county commissions to seize property currently owned by school boards --some county commissions might take advantage of that option now (as appears to be the case in Wake County), while others could decline for now and exercise the right at any point in the future.

I'm writing from the perspective of a Wake County resident (the bill started in the fight between the school board and the county commission in Wake), but this proposed legislation makes it an issue for the entire state. Here's why this bill is a bad idea:

• School buildings are about education, not real estate. Numerous studies have demonstrated the link between student achievement/behavior and the physical building conditions for students and teachers. Everything from lighting and paint to ventilation and HVAC impacts student success in a school. Think that sounds crazy? Imagine how effective you'd be at work if your office roof leaked onto your desk, your work space was too cramped to be functional, the heat stopped working and you had no access to natural light all day. Each student will spend more than 16,000 hours in these buildings before graduation -- teachers and principals will spend many more than that over their careers. They deserve dynamic spaces that encourage growth, creativity and intellect, not another obstacle to success.
• Education decisions aren't business decisions. Sen. Hunt likes to argue that business people do a better job of managing real estate decisions than educators do -- and he has some lovely (but misleading) pie charts to show his analysis of the level of business experience on county commissions versus school boards. But schools are in the business of educating children, not making profits and paying shareholders. School boards must be fiscally responsible, but student achievement should be their bottom line. I don't want the cheapest school possible; I want the best educational environment for my money. Even the Greater Raleigh Chamber of Commerce -- an entire organization of business people -- is opposed to this bill. And because county commissions already control the purse strings in North Carolina, they don't need this bill to manage the money.
• Experience matters. The Wake County Public School System (WCPSS) is an award-winning district when it comes to building design -- including nods from the American Institute of Architects (AIA) and the Environmental Protection Agency (EPA). Decades of experience inform the school board policy that defines design guidelines for school construction to ensure an effective learning environment, including everything from windows in classrooms to the size of science labs. School boards -- the elected officials closest to the classroom -- are in the best position to understand the complex requirements for a successful school. The county commissioners do not have a similarly strong track record with large building projects on this scale.
• The user, not the owner assumes liability. There are unanswered questions in the proposed legislation around liability issues. The county commission wants the option to assume ownership, but they do not appear eager to assume any liability related to the buildings or the property. Because of the vagueness of the bill (whether intentional or not), school boards would still be liable for incidents on school property. In other words, school boards would be surrendering their expertise in design decisions as well as their power to impose risk management strategies during the design and construction processes, but still be held accountable for injuries sustained on school grounds. Not only is this bad policy, this uncertainly could result in poor bond ratings for the entire system (poor bond ratings make construction more expensive).
• Checks and balances lead to better decisions. Leaving funding authority with the county commission maintains their control over taxing and bond decisions. Leaving design, construction and maintenance responsibilities with the school board maintains their control over the connection between school facilities and academic factors, student assignment, overcrowding, feeder patterns between grade levels and infrastructure needs to support teachers and students. Neither group holds all the power, resulting in a level of accountability that would disappear under the proposed legislation.
• Politics are contentious enough. Given the division of authority between the school board and the county commission, there's already plenty for them to argue over in budget and bond decisions. This bill does nothing to solve the current challenges and actually makes them worse by removing those responsible for the schools from the process of creating them. In Davie County, just southwest of Winston-Salem, the school district can't get county commissioners to agree to fund the building of a second high school or renovations to the existing high school despite the fact that an independent analysis by the state (and any parent walking into the building) identified a desperate need (more on this from the W-S Journal and a Davie County blogger). 
• Sales tax exemption isn't a good reason. Sen. Hunt argues that school boards pay more for construction because they have to pay sales tax on purchases, while county commissions are exempt. However, until 2005, local boards of education were able to use tax refunds. Many other groups, including cities, counties, public universities, private schools and other non-profits, can apply for a sales tax refund or exemption. If Sen. Hunt really wants to propose a useful bill for education facilities, he and the state legislature could eliminate this change and make local education authorities tax-exempt again.

There is one thing that Sen. Hunt and I agree on: school boards need to be able to focus on education. Unfortunately, he and Senate Bill 236 will cripple their ability to do just that.

Special thanks to Jennifer Brock, a Raleigh-based architect with years of experience in school design and mother of four WCPSS students, for her professional advising on this post.

If you'd like to write to your legislators on this issue, visit Wake Classrooms Count (if you're a Wake County resident) or search for your people here. Or use this list to email the members of the Senate Education Committee: Dan.Soucek@ncleg.net, Jerry.Tillman@ncleg.net, Chad.Barefoot@ncleg.net, Austin.Allran@ncleg.net, Tom.Apodaca@ncleg.net, Tamara.Barringer@ncleg.net, Harry.Brown@ncleg.net, Angela.Bryant@ncleg.net, Bill.Cook@ncleg.net, David.Curtis@ncleg.net, Warren.Daniel@ncleg.net, Don.Davis@ncleg.net, Malcolm.Graham@ncleg.net, Fletcher.Hartsell@ncleg.net, Clark.Jenkins@ncleg.net, Martin.Nesbitt@ncleg.net, Buck.Newton@ncleg.net, Earline.Parmon@ncleg.net, Louis.Pate@ncleg.net, Ron.Rabin@ncleg.net, Gladys.Robinson@ncleg.net, Bob.Rucho@ncleg.net, Josh.Stein@ncleg.net, Jeff.Tarte@ncleg.net, Trudy.Wade@ncleg.net, Mike.Woodard@ncleg.net

Pippipalooza: Signs of a Big Girl

"I am five."

That's Pippi's new greeting -- she doesn't say hello anymore, just thrusts out her hand with fingers spread and proclaims her age as if it's the most important thing you need to know about her. Which, clearly, it is.

She's also been doing the things she's supposed to do -- occasionally -- and then announcing them with a knowing nod. "Look, Mommy. I'm brushing my hair without being asked. Because that's what five year olds do."

It's all a little comical, this notion that last month she was a baby and NOW she is a Big Girl. But it's also kind of true.

Here are five signs that she really is so very big:

1. Ice skating: She can now skate without holding onto a chair or a grown-up. It's not exactly speedy or graceful, but she can shuffle along on her own. This is a big deal when your older brother is a hockey player.

2. Dentist chair: At her recent dental check-up, she climbed right into the chair and leaned back without assistance -- no flinching, no complaining, no worries. At the previous visit, I had to lie on the chair with her stretched out on top of me during the whole exam and cleaning. I like this version much better.

3. New bike: She's still using the training wheels (although probably not for long), but her new big girl bike is the same size as her brother's. It's also purple (to match her new helmet) and has spinney glittery spectacularness on the handle bars. It makes her legs look oh-so long.

4. Bed decor: We still haven't totally finished decorating her nursery-turned-big-girl room yet (hence all the sketches taped all over her walls), but she actually has a duvet cover on her comforter now. It's grown-up Garnet Hill and beautiful. Thankfully, she still looks small all tucked in under it.

5. Potty: Now she's so big that she wants to use the bathroom alone. (Note that this does not translate into letting ME use the potty alone when we are at home.) I'm still jittery about allowing it in most public places, but now and then I try to give her a little privacy. Obviously, I'm not willing to go very far yet.

 Sigh. The days are long, but the years go by at the speed of light.