Two weeks ago I traveled up to Idaho for an Ivy Girl Academy workshop. The workshop went so well! We had 56 beautiful young ladies join us and make it a huge success. I love watching these girls and how they grow throughout the day. We had a handful of girls at this workshop who did not want to be there when they first arrived. One girl actually left, but luckily came back about a half hour later. I pay particular attention to these girls and loved watching them smile as they make new friends, volunteer for things, and really get involved throughout the day. Following the workshop a lady came up to us just beaming, she told us that she is a foster mom and two of her foster daughters had been at the workshop that day. One of them was very against it from the start, but was bouncing off the walls with excitement by the end of the day. With tears in her eyes this foster mom thanked us for taking the time to do what we do, she could not believe the change that had come over her girls. Hearing/seeing things like this makes all the hard work we do worth it. If we only help one girl it's all worth it! I love that I get to be a part of such a wonderful organization!
Last week I attended the Chiari Walk Across America in support of chiari awareness and research. It was a fun day mingling with fellow chiarians and feeling of their support. The worst part of having an incurable chronic illness is feeling all alone in it. It was nice spending the morning with people who get it!
At the start of the walk everyone was given a bead necklace. They gave purple beads to anyone who had chiari, silver beads to those with friends and/or family with chiari, and green beads to those who were walking in honor of someone who had died from chiari. I was shocked and saddened by how many people were wearing the green beads.
Living with chiari is not easy. Some days are great and relatively symptom free. Some days are terrible. Some days I just lay in bed crying, begging for it all to stop. Some days I'm just tired of hurting, crying, missing people, and missing out on fun things. There's so much in life I want to accomplish, so much I'll never be able to do. I want to live freely and not have to think out my days to see if I'll have enough energy to do what needs to be done. Some days I am so tired of the battle that I just want to throw in the towel and give up. Then I remember that every day is an opportunity to grow, to learn, to live. Each day is a gift and each day my fight matters. I may be knocked down, but not out. Crying, but still breathing. Broken but brave. Each day is a day to have hope, courage, and faith; because losing this fight is not an option!
For more information on chiari go to conquerchiari.org
Here are just a few pics from the walk.
It is awesome to see that you are really giving back to the community. I really hope that your battle with Chiari gets better I really just hope that you feel better about life! :)
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