This year I was fortunate enough to attend the Spina Bifida Association's 39th Conference in Indianapolis.People have been abuzz in all the SB groups on facebook, including my group, Living With Spina Bifida. It's been a personal goal of mine to meet some of the delightful people I've had the gift of meeting in the online Mom and SB community. It was exciting to count it down with friends and talk about meeting up in the lobby. There were so many sessions I wanted to attend, so much going on, so many doctors and speakers and vendors. The Cincinnati Children's Hospital Colorectal Center was presenting and had a booth. A million medical supply providers for catheters and orthodics, different wheelchair vendors, the ZipZac chair, armtrykes, standers, service dogs, latex allergy groups, and so on. Jean Driscoll spoke at the celebration luncheon and she is an amazing athlete and speaker. My homie Erica Hoke Potter won an award for her fundraising efforts for 4 before the 4th. They shined the spotlight on some really awe-inspiring people who are doing important things.
This trip had me pumped. Super pumped! However, it was a journey fraught with trouble. It was cancelled flights, bodily fluids, personal injury, and Hell on my back. I could be heard saying I was never going to leave my house again after this trip. Kemper is still out of sorts over a week later and missing a piece of his top front tooth. Thankfully it's a baby tooth, but still, a chipped tooth. I'm nursing a 2nd degree burn on my hand, and some of our clothes were thrown away. I had a big stroller, diaper bag, cath bag, carry on, a suitcase, and my car seat. It was ridiculous. And so hot, dude. Crazy hot.
I'd go again in a heartbeat though. The bond between the people in our community is strong, for the most part it was like getting together with old friends. The information and networking at the conference was absolutely worth the trip. Kids Camp was fanastical, the girls running it have a sister with SB. They were great with my son, and with the clingy Mom. (It was the first time I'd been away from him like that, c'mon, that was hard!) The tips and pointers and feeling of someone really knowing what your life is like and understanding how hard and how wonderful the day to day can be is so awesome that it makes me a little emotional. My heart was usually soaring or breaking, I cried a little, and I got some really solid information and feel like I have a plan for Kemper. That feels freaking amazing. It's like you're bursting with renewed energy to be home from conference. You have all this information and data and know what you need to work on, and it's rejuvenating to the spirit to have that burst of steam to do something great for Kemper. It feels good to have a plan and goals and ask panels of experts questions and get answers and suggestions that are working.
If someone asked me if conference was worth the hefty tag of attendance, hotel, and airfare, I'd say without a doubt YES. Also, it's pretty sweet to stay in a swanky hotel and go to receptions and have wine and catered breakfast and lunch for a few days with some really nifty peeps.
Next year will be a little different with mini conferences, but I still plan on going to whatever they have, and participating in the SBANCSC Walk n Rolls this coming year. This is my cause and I have renewed vigor.