Ben made it to Washington and had a really successful trip to the National TSC Alliance annual board meeting. He met a lot of really nice people whose children have TSC and they gave Ben a lot of helpful information and support. I think some of the people there were kind of freaked out by Ben and his ambition :). I love it! Some were very supportive of his mission and motivation and others were not. They have seen so many people just like him with big dreams and are all gung ho until they get burned a couple of times and they loose their motivation. They don't know Ben. Ben has been burned and told no plenty of times in his life and it has never stopped him or discouraged him a bit. He may get down for a minute, but he always bounces right back.
Before Ben got to DC several of the people from the Alliance went to visit Senators and Congressmen to try to convince them to sign a rare diseases bill that is about to come across their desk that would give TSC $15 million in 2011. He learned that they could not get in to see 2 of our congressmen and Saxby Chambliss, a Senator. So, when Ben got home he called a good friend of ours who knows the two congressmen very well and she told Ben to get her a letter telling them everything they need to know and she will hand deliver them and get them to sign our bill. Then on Saturday Ben was driving around just killing time while I was hanging out at home with Beth and Tracy. They had come to visit Kallan for the first time. So, Ben looks over and sees a car with a license plate that says "U.S. Senator" on it. So, what does Ben do......he follows him!!!! Lucky for Ben the car pulled over into a gas station a few miles down the road. It was Saxby Chambliss!! Ben went into the gas station and bought a water so he would not look like a total stalker and then went up to him and made some small talk with him. He lead in telling him I went to college with his son and then did some name dropping of lobbyist that they both know. Then he went into his story about Kallan and told him he needed him to sign our bill. Saxby was so nice to Ben and told him to write him a letter telling him everything he needed to know and have the lobbyist hand deliver the letter to him. He then told Ben he would keep our family in his thoughts and prayers. I was blown away that Ben did this! How many people would want to walk up to him and ask for his help but would never have the guts to do it! Ben never even thought twice about doing it. It was for his daughter and he will do whatever it takes. The man is afraid of nothing!
On Sunday we decided we were going to make the effort to make it to church. We have found a church at the lake that we really love and they have been so incredibly supportive to us during this hard time in our life. We especially love the preacher and his wife, Barbara. They came to visit us after the baby was born and prayed with us. We were both pretty emotional at that point and they really helped us come to terms with Kallan's disease and help us with the why me's that we had. I told Pastor Lee that I felt like since we have been going to church consistently and really trying to be better Christians more bad things have happened to us than ever before. I was so frustrated. He never tries to act like he has all the answers, but he offers his take on why he thing happen the way they do. He told me that the reason God lead us to that church was because God knew we were going to have these struggles and he knew we were going to need our faith to be strong to get through it. I had never thought of it like that! That answer worked for me. It really made sense of it all to me.
I was so proud of us. We all got showers and baths, I did not get my hair dried, but I did get some make up on! We got out the door and to church almost on time! I am still struggling with getting two kids and myself ready and out the door. Two kids is a whole new world - holy cow! I took Kensley to her room and I sat outside and listened to the sermon with Kallan. I love it when you go to church and you feel like the preacher knew you were coming and prepared a sermon just for you. The sermon was all about obstacles in our lives and keeping our faith strong when things don't go the way you want them to in life. It was exactly what we both needed to hear. It was so great to see everybody and show off our sweet baby. Everybody was so excited to see us and so nice and supportive. I feel very lucky to have found this church when we did.
Then we went to Great Waters for brunch and I spent the entire time in the bathroom! First I had to go, then Kensley had to tinkle, then Kallan pooped, then Kensley had to poop, then Kallan pooped again!!!! Oh my gosh!!!! Again, the two kids things is as some people say "rocking my world"! It was really nice to get out of the house and feel somewhat normal again. Kallan is still doing great. She is starting to actually smile and us. Not just when she passes gas. It makes it all worth while when she looks at you with that sweet face and gives you the biggest smile. I will do anything in the world for her as long as she just keeps smiling at me like that. We are still paranoid that every move she makes is a seizure, but I think we are just that....paranoid. It is so stressful to hold her or feed her when she has gas because she grunts and jerks and turns red in the face and we both sit there looking at each other saying "was that a seizure" "oh that had to be one" and then the next thing we know she poops and she is fine and we are always so relieved. I never thought I would be so excited every time my baby poops! I guess that is what they mean when when they say celebrate the small things and enjoy the good days.
Kensley is still doing great too. She has been such a sweet girl since Kallan was born. She can mess up a house faster than a tornado, but she is happy and having fun so I just let her go and clean up when I can. She LOVES to hug and kiss on Kallan all the time. It is so sweet. She loves Kallan so much. She tends to love her even more when I am not holding her though. She is very needy of my attention and knows how to get me to have to put Kallan down to help her. I can't complain though because she is not pitching any fits and is just so good.
Yesterday was my first day with both girls all by myself all day and we did awesome!!!! I have been so spoiled having Nene (my mom) around so much, so I was very nervous. Both girls were so good! It was like they knew I needed them to be extra good to build up my confidence. It was such a nice day so we played out side and went to visit Kensley's new BFF, Claudia. Then we went home, ate lunch and all three of us took a nap together. I even got a shower in AND brushed my teeth and made dinner for Ben (just a sandwich, but it was still dinner). That is a very successful day in my eyes. Funny how my life has changed. Success used to be all about closing loans and bringing in new accounts to the bank. Now it is managing to keep the kids alive, healthy and happy all day while finding the time to shower and brush my teeth.
