SBA National Conference

Last week I flew to Anaheim, California, for my second Spina Bifida Association National Conference. The week was so amazing, that I've spent the last few days wondering how I could even put it into words. I loved every minute of it.


I attended last year's conference in Cincinnati, where I was blown away by what I learned, and I got to meet a few of my Spina Bifida mommy friends. So I was REALLY looking forward to going to California, meeting many more of my mommy friends, and seeing what I would learn this year. Blake and I decided that I would go by myself this year, because it would have been really expensive to fly all of us to California and for registration for all of us, and of course we would go to Disneyland, etc. We weren't even willing to think about flying a long distance with both kids. Plus, in addition to adding to my personal knowledge, I was going for work and would be attending Leadership Institute (for SBA chapter leaders) sessions this year, so I was able to focus more on the conference without the distraction of those pesky kids. :) (They're not really pesky. Okay, sometimes they are.)

One of SBAK's board members, Michele, traveled with me, and I was so glad to have the company. The first night we arrived (Sunday), there was an opening reception. I immediately started recognizing my friends!

Okay, stop here because that is a wierd sentence--I immediately started recognizing my friends. Except for one, I had never met any of them in person before, but they are among my dearest friends. We know each other, each other's kids, each other's problems and successes and abilities and character. Sometimes I think when people talk about meeting people online, it seems dangerous or sketchy or just superficial. Sometimes I think even we might underestimate the "realness" of these friendships. In California, I saw it--this is real. Tears were flowing as we met each other, and left each other. And the conversations started in the middle of conversations, if you know what I mean. There was no awkwardness or getting to know each other. We had never met, but we were reunited. And as I said in the Parent Chat session, I had never been to California before, but in that room full of moms I have been talking to for years, I felt like I was home.

I had to leave early from that reception to attend a reception for executive directors (I'm currently serving as the interim executive director at SBAK). This little party was in the Mickey Mouse Penthouse! It was an awesome suite, and they had great food there, and I had the chance to meet with other ED's as well as the National Office staff.

On Monday morning, I gathered all the people attending from Kentucky--about 15 people--to meet each other. For some of them, this was their first conference, or first time meeting other people with Spina Bifida! To say the least, they were overwhelmed, and it helped to meet people from home so they would see someone they "knew" in the sessions.

About being overwhelmed--that is a very common feeling at this conference. About 850 people attend. I don't know of too many places where you would see more wheelchairs. For some that is very comforting, and for others it's overwhelming. You talk about SB all day long for 3 days. It can be a little much. I think it's especially hard for parent's of young children (you still don't know exactly what issues your child will have, so you try to learn about everything) or people who have never been around a lot of others who have SB. Because I work with SB every single day, at work and in my free time, I felt pretty okay.

Monday morning was spent in the plenary session, which focused on the biggest SB research news this year--or maybe this decade. The MOMS study. For obvious reasons, I was on the edge of my seat--it was fascinating. The doctor who led the trial talked about the results, and then another doctor kind of balanced that out by presenting some limitations of the research.

At lunch I looked around for people I knew to sit with. Oh, here they all are sitting on the floor because there were no tables big enough for the group.

By the way, yes, we did plan that, to all wear our Redefining Spina Bifida shirts on the same day. We had SO MANY people ask us where we got the shirts, what was the story behind them, and where they could get their own! It was a great opportunity to tell people about our friendship and some of the amazing things we've accomplished together.
That afternoon I attended an important Leadership Institute session about some upcoming changes for SBA and it's chapters ... but I had to sneak out an hour early because there was no way I was going to miss the Parent Chat. Parent Chat is what I DO! :) Through playgroups, the message board, etc--I am all about the power of getting some parents together to solve the world's problems. As I have a tendency to do, I kind of took over moderating the chat. Oops. (eh, that nurse wasn't very helpful, lol). As I discovered last year, there is a huge difference in the parents who have the support of playgroups like at SBAK or online support such as the Spina Bifida Kids message board, facebook, and blogs. For us, this was just an extension of that daily conversation. For others in that group, this was the first time they had ever met other parents of SB kids. They felt isolated and confused. We hooked them up with some good resources.
That night was the time we had been waiting for for weeks! A group of us babycenter, blogger, facebook families decided to meet up at another hotel's lobby. It was awesome! It reminded me of my wedding, actually (lol)--for my wedding, my wish was to gather all of my friends and family from all the different states I'd lived in, in the same room. Here, so many of my good friends from across the country were finally gathered in the same room, and many of them had their babies with them! The group pictures were quite an undertaking.

After I got to hold babies, and hear "Where's Nate?" 50 times :) (I missed him!), and hug on each other some more, a few of us went out for dessert. MAN, it was nice hanging out with these girls.

Okay, see that head floating directly to the left of mine? That's Stephanie, and she and I go way back to nearly the beginning of this journey. Her son, Jack, and Nate were both due in August 06 (Nate came in June, Jack came in September) and we were among the first, like, 6 moms on the babycenter Spina Bifida Kids board! Jennifer, far right, came along soon after that. I love all these ladies!

Tuesday was nonstop sessions from 9:15-5:15. You don't even get a break for lunch--they give you a boxed lunch in your session! I spent most of the day in Leadership Institute, but there was on session time that I could attend a regular session. I started in "Ask the Urologist", where I asked them to tell me the name of the test that would tell us whether Nate is able to potty train. These guys said the same thing our urologist said--there's no test that will tell us that, and we have to wait on our stubborn 5 year old to decide he's going to try it. Hmph. I skipped out and hit up the "Ask the Neurosurgeon" session, where I asked about tethered cord syndrome in the fetal surgery patient, and I got a lot of this guy's opinion against fetal surgery, lol. Anyway, both were good. I tried to hit up the Ask the Ortho session too but got there just as it was ending. I love this kind of stuff. I'm a major student-at-heart, and I was just drinking in as much as I could learn. Every now and then I'd look over at the person next to me and say, "This is fascinating, right?"

By that afternoon, my brain was mush. I expected to feel like that, and remember feeling that way last year. So much information. At that point, I was so tired that I started doing what I always do when I'm tired--lose stuff. Somehow between the conference building and my hotel building--which was like a one minute walk--I lost a bottle of diet coke. Had no recollection of laying it down anywhere. I just wanted a nap. But my friends talked me into going to Disneyland. :) And I'm sooooo glad I did. First thing we did was ride Space Mountain, and THAT woke me up.

We were running around the park like little kids. I have to admit, I felt pretty guilty at Disneyland having fun, without my kids and husband! But I know I'll never forget the awesome time we had that night.

At one point, about half the group headed back to the hotel. But Stephanie wanted to ride Space Mountain just one more time! We were out of fast passes, so we waited in line for at least an hour, and screamed our heads off, and got off the ride at exactly midnight. We missed the monorail, so we walked back to the hotel. I was so tired--it was like 3:30am eastern time!--and fell in bed and couldn't move. But it was worth it. :)

Wednesday morning I went to another Leadership Session, then got to go to a session about Bowel Management, something we're very interested in getting started with Nate (if he'll get with the program). I learned a lot and came away with a plan. Afterwards, a bunch of us went to lunch.

Met some famous people...

Then attended one last AWESOME session about learning challenges in children with SB--I have a game plan with that one. And then it was time to say goodbye ...

Again, there were tears and gushing and promises of meeting up next year and hugs. Picture us blubbering saying, "You guys really understand!!!" lol

The last thing of the day was a Town Hall meeting, where people could give feedback about the conference and issues in the SB community. I was so excited that I got to speak with Cindy Brownstein, the CEO of SBA, about my Delivering the Diagnosis project, and she encouraged me to send it to the national office to have them look it over. Yay!
Michele and I went to the airport that evening and met up one last time with Stephanie, whose flight was delayed. We flew out at 9:30pm (12:30am EST) and landed in Atlanta at 4:30am. That was a miserable flight, and neither of us slept. We tried sleeping in the ATL on our FOUR HOUR layover, but that wasn't very successful either. So I flew home, with basically no sleep, and had several appointments and errands to run. I still have not gotten back on a regular schedule. That's why I'm blogging at 1am. But the kids were SO happy to see me! I got a 2 minute hug from Nate, who kept saying, "I missed you so much!"

To all the people who came up to me to give me a hug, tell me how I encouraged you when you were pregnant, or thank me for posting videos of Nate that give you hope--I can't tell you how gratifying it is to hear that, and I appreciate those words so much.

To all my mommy friends who couldn't make it this year--I know you're probably tired of hearing about this, and we did miss everyone who wasn't there. It's expensive, but if there's any way to make it next year, be there. Have a car wash or a spaghetti dinner, or ask your chapter for a scholarship, or ask for funds for your christmas, birthday, and anniversary gift to save up for next year in Indianapolis.

Next year, I'm taking the family. :)