Toby and I. Love this kid.
Carrie and I headed to Indy around lunch time on Thursday. It was so fun to have those few hours in the car with her to chat and catch up.
Leaving Ohio. Indy here we come!
We made it to Indy around 4 in the afternoon. There is an entire story around how we parked the car in parking garage a block from the hotel and yet managed to wander around downtown Indy for about 30 minutes looking for our hotel. I had hoped to enjoy cooler weather in Indy but that did not happen. It felt like Texas there.
I roomed with Carrie and 2 other ladies, Jen (Owen's mom) and Stephanie (Nate's mom). I had never met Jen or Stephanie but I have "known" them for quite awhile through their blogs and facebook. I was so excited to finally meet these women so that I could give them a real hug instead of the internet (((hug))).
Stephanie, me, Carrie, Jen
It was so much fun sharing a room with these wonderful ladies. We stayed up late watching "Pawn Stars" "Seinfeld", and the Olympic trials. We would talk to each other through Facebook even though we were all in the same room. It was hysterical. We ate candy bars at 10:30 at night. We learned random things about each other like someone snores (I won't say who) and someone likes to cuddle (again, not saying who).Truly a great group of women that I just love. Friends for sure.
I love finally getting to meet these wonderful women face to face.
Truly the best part of the conference for me was the people. I loved seeing these wonderful fellow SB moms. I was so proud of the moms with younger kids (especially those under 2). There was so much information given at the conference and it would have terrified me to hear all that when Caleb was younger...truthfully I was a bit terrified anyway and Caleb's almost 7. It was a lot to take in and deal with especially for the moms of younger kiddos.
I also LOVED seeing the older kids, teens and adults with SB at the conference. It's like a family reunion there. You can just see how happy the SB community is to connect and see friends. It was so great to watch and made me wish that Caleb was there. I definitely think he is at the age that he would really enjoy Kids Camp and would benefit greatly from going.
So, what did I learn at the conference? In a word: Independence. I think that was the main thing I walked away with. The importance of independence in Caleb's life. That isn't exactly rocket science and it wasn't necessarily anything I didn't already know but independence was drilled into my head pretty good by the end of the weekend. Because I want Caleb to be independent in all areas of his life, I began to think about some pretty big surgeries that could be in his future. I went to several sessions on those surgeries and I think I will begin really looking into those options for Caleb. I don't want to. But I will. I've got some research to do for sure.
I went to the "Ask the neurosurgeon" session which was just an open time for people to ask whatever questions they had to 2 pediatric neurosurgeons. I had one question in mind and I waited until the very end to ask it. I gave a quick run-down on Caleb's tethered cord surgery and the loss of function.
My question: "3 months out from surgery and he still can't walk or stand-up. Is there still hope?"
Neurosurgeon answer: "Yes, just keep up with physical therapy."
She may have said something after that but all I heard was "yes" and then I started
crying sobbing. I didn't realize how much I needed to hear that and the emotions just came flooding out. Thankfully, I had a couple of friends with me who were quick to give me hugs.
I also learned a lot about executive functions and social skills in kids with SB. It was a bit overwhelming to be reminded of all the things that SB affects. If only it affected mobility! But it doesn't, it has a systematic affect and it feels like there is nothing that SB doesn't directly impact. There is just so much to think about and work on with Caleb. It was a great reminder even if it did give me a headache.
I think most people would agree that the Sibling Chat was a highlight of the conference. It was a panel of teenagers that have a sibling with SB. It was a very moving session and I should have known I was in trouble when I walked into the room and the entire audience was crying. It was just so great to hear their perspective on having a brother or sister with SB. I think about the impact all of this has on Benjamin. Maybe not so much now because he is so young but I do worry about it as he gets older. It was just refreshing and touching to hear the sibling side of the story. Really great session.
I'm really glad I made it to the conference this year. They announced that there will not be a national conference next year. Instead, they are going to have several mini-conferences in different locations across the US. A lot of people were upset by this choice but I personally think it is a great idea. Not everyone can afford to travel for the national conference and offering more local mini-conferences will really open the doors for more people to attend.
So that about sums it up. Carrie and I drove back to Ohio on Sunday and I flew back to Texas on Monday. It was really great to see all 3 of my boys after being gone for 5 nights. Benjamin kept saying: "I love you. I missed you." So cute. The boys did remarkably well while I was gone. Glenn took them to MeMe's house for a few days and they had a great time.