My amazing husband

My husband who has never been afraid of anything, or anybody continually amazes me. He has never let anyone tell him he can't do something and he can do anything when he makes up his mind to do it. He has done many things that have made me so proud since we have met, but he has really stepped up and has been the most amazing father and husband since we found out Kallan's diagnosis.

The first thing he did was as he was sitting in a doctors office reading a magazine, he came across an article about the new Harrison Ford movie called Extraordinary Measures. The movie is a true life story about a father who's children were diagnosed with a very rare and fatal genetic disorder. He quit his job as an attorney and set out to find a cure for his children. He worked day and night and never gave up and he raised over $100 million and found a treatment for his children's disease. He saved their lives and the lives of many other children. It is such an amazing story. Ben was so moved by the article he read and he went right out and bought the two books about this man named John Crowley. He read the first book in a day. As soon as he finished the book he started working on a letter to him. I mentioned before that we are so focused on fundraising and raising money for TSC. Ben really wanted to talk to John Crowley and find out how he raised so much money so quickly. He finished the letter and Fed Exed it to him his first day back at work. We never intended to hear back from him knowing that he is probably being bombarded with letters just like ours and knowing he is now CEO of a major biomedical company AND just had a movie come out about him the day after Kallan was born. We had just planned to mail him a letter every week until we got his attention and got him to respond. Well, we were wrong. A week after sending the letter Ben got a phone call from John Crowley's secretary and John wanted her to schedule a call with Ben for March 2nd!!!! How freaking exciting is that!!! Think how many people would want to talk to this man, but would not have a clue to go about it. Ben never thought twice about it. He knew he would talk to him. He just didn't know when. I could not be more proud of him! I can't wait to hear how their conversation goes. Ben is so nervous about the call. He does not want to sound like an idiot, so he is preparing lot's of questions and doing a ton of research. I have no doubt that he will impress the heck out of Mr. Crowley!

Ben also got our first donation to the TSC Alliance last week! We were so excited! He had to take Kallan to her cardiologist appointment without me because I had the stomach bug that was going around and had to go to the doctor. It killed me not to be there, but he did great without me and so did Kallan. When he was in the waiting room, in typical Ben fashion, he started chatting with a lady there and told her our whole Kallan story. Ben has so much passion for finding a cure/treatment for TSC and making Kallan a success story that you can see right away when talking to him. He had the lady in tears right there in the waiting room. The next thing he knew the lady came and found him while Kallan was being looked at and gave him a check made out to the National TSC Alliance. In the Memo line it said "your beautiful baby". She told Ben that if he takes that beautiful baby with him everywhere he goes and tells the story just like he had to her - then he will raise that money. Ben and I were both so touched by this woman and she gave us so much hope that people will be touched by our story and want to give. They are so close to a treatment, so every dollar goes a long way when going towards TSC research.

As I write this post Ben is in Washington DC after being invited to the annual board meeting of the National TSC Alliance by the CEO of the Alliance. He called her up to let him know about his fundraising intentions and wanted to get any marketing material they had. I think the lady was blown away by his ambition and realized quickly that this guy is going to be a major asset to the Alliance. During their first conversation she asked him to be on a fundraising committee. I am so excited to have him at that meeting because I feel like we will get all the latest research information first hand. Ben spends SO much time on the internet researching TSC, so maybe this will give us some good information. We hope!

Most importantly Ben has been an incredible husband to me and daddy to our girls. He has really stepped up to the plate with this second baby. He helps me so much. He takes night feedings on the weekends, always gives Kensley her bath and has really become my teammate (cheesy I know!). Kallan LOVES to sleep in his arms, so every morning when she wakes up around 5 I feed her and then give her to him. She will sleep for 4 hours and sometimes more in his arms! I am so against kids sleeping in the bed with us, but I figure if the sun is up it does not count! I can justify anything for sleep. :)

When you marry someone you just never know how that person will act when faced with true adversity until it hits. You can be blown away by the way the handle it or really disappointed by it. I am so happy to say that I have been blown away by how Ben has handled it. He has truly been amazing in every way. Going through this has brought us even closer together. I am so thankful for him and all he does for us.