Tuesday, June 1, 2010

TSC Walk for a Cure











On May 15th we had the TSC Walk for a Cure. To be honest I was really dreading going. I had no idea what to expect and what I may see there. It had been a long, TSC filled week with our cardiologist appointment and trip to Cincinnati. Even though we got good news from the MRI I was a little down from the week. It had been a humbling reminder that my baby is not a normal baby and she does have this horrible disease. She is doing so well that I almost forget that sometimes.

So, Saturday came and we got up and drove to the Marietta Square. We got super lost, Kallan was screaming, Ben was screaming, Kensley was talking non-stop and I was on the verge of tears! I can laugh about it now, but at the time it was so not funny! My phone GPS was taking us in circles! We were going to be late to our own walk! But, we weren't! We finally figured out where to go and go there just in time to meet our friends who came to walk with us. We were blown away by our friends who wanted to spend their Saturday walking for our daughter with us. Our friends Amy and Ken and their two kids even drove all the way in from Lake Oconee just to walk with us! It made us feel so good to know we have so much love and support. It was so great because a few people who came were friends we had not seen in forever, so we got to catch up as we walked! I cannot say thank you enough to Matt and Carrie Ward, Allyson Clifford, Carmen Alvarez, Ken and Amy Beyer, Lauren Sanders and of course my awesome family who came out and held up the rear with us :)!!! It meant the world to Ben and me. Also, I have to give major credit to my sister-in-law, Laura for raising over $1,0000 on her own!!! I told (not asked) her that she had to raise that much to be able to walk! She likes a challenge so I knew she would do it and she did it and then some! Way to go Laura!!!! And a huge thank you to my sister who raised $500 while working 24/7, flying all over the world and having people visiting her! I have the best sisters in the world! Seriously.

The walk was so not what I expected. It was actually a lot of fun! It was great to see kids with TSC running around and playing. While there were some there that were more severely affected, there were just as many that were doing great and overcoming their struggles. It was fun to meet other families who are going through the same things as us and compare experiences, doctors, etc... One of the coolest things I saw was two kids had seizure dogs....the dogs were trained to detect when the child was having a seizure and alert the parents. We are such dog lovers, so of course we want one! We have two golden retrievers now, so we may have to wait a while. I don't think there is a vacuum cleaner strong enough to handle three!!! There were lot's of fun activities after the walk for kids. Kensley, Hannah and Lilly got their faces painted and they thought that was the coolest thing ever! Kensley was so funny because she would not move her lips when she talked the rest of the day because she thought she had paint on them like lipstick and did not want it to come off. Look at her lips in the pictures!

We came in second for fundraising and I think we would have came in first if we had more time. But, the reality is that we do have more time. Until there is a cure for TSC Ben and I will never stop trying to raise money. It is a yearly thing for us now. Not just for the walk. Although I was very proud of us for coming in second!!! We got lot's of t-shirts because of all the money we raised! Kensley loves to wear her "walk for Kallan" t-shirt. She is so proud of it because she walked for her baby sister. She has no idea what that means and she does not understand Kallan's disease, but she recognized that it was a big deal and was excited to be a part of it.

After dreading the walk for weeks, the day turned out to be so a lot of fun and it was so good to see our friends who came out to support us. We are already looking forward to next year and hope some more people will come out and walk with us!

1 comment:

  1. Hi! My name is Monica and my baby girl was born June 19, 2010. I was just googling the name Kallan and found your blog. We did not have a name for our daughter until after she was born. We had tossed around names for so long and it became almost a joke that we didn't have a name. The morning she was born, we finally decided on Kallan, because of the meaning and the way it sounded. The next day as we were being discharged, the pediatrician heard a murmer and after the echocardiogram out lives began to crumble. Our Kallan has Tetrology of Fallot and Pulmonary Atresia, which will require open-heart surgery in the next few months and ongoing in her life to replace the part that will not grow with her. We are so glad we namews her Kallan, given the meaning of the name. How coincidental that I found your blog just googling her name, and found you also have a daughter with a heart problem. We are in Massachusetts. I wish you the very best with your daughter. I know how it feels to feel helpless and the pain when your heart aches and you think about the future and the road ahead. But we will be strong for our Kallans and for our families. Take care! Monica

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