Thursday, May 31, 2012

This Is Why We Walk

It started in a hospital postpartum room. My brand new son was getting routine tests done and couldn't stop bleeding after a heel prick. It seemed surreal at the time that something could be wrong with this perfect looking creature. My husband and I waited and waited for doctors and nurses to tell us something, anything. After what seemed like hours, they sat down and told us they suspected hemophilia. All I knew about hemophilia was it meant trouble with blood clotting and Ryan White. Hemophilia. Where Google told us that our perfect new child could live a normal life. Hemophilia. Where I would have to infuse my child with medication in order to keep his body normal. Hemophilia. Which indicated extra doctors visits, modifications on the playground, and the possibility of death for no reason other than that his body just couldn't produce something mine could.


We were scared. We were unsure how this would affect our lives. We were afraid of how it would change the way that we parent, the way that we look at our son, or the way that we treat him. And then I got mad. I got mad at everyone and no one. I didn't want this for my child. I didn't want to deal with this. I didn't want to be scared all the time. I didn't want to feel out of control.

And that's when I met the director of the Hemophilia Foundation that serves our area. A friendly woman who welcomed me into the community with open arms. A woman that understood that I wanted to do something about this and not pout in a corner waiting for others to feel sorry for us. A woman that has extended herself far beyond her job description and become a friend. The foundation was planning their first ever walk and asked me if I would be interested in helping. I gladly accepted, though I was completely unsure of my role as this was something they were just figuring out themselves.

Now, almost five years later, we just finished planning our fifth annual Spring Walk for Bleeding Disorders and it keeps getting better every year. From the planning perspective, I serve on a committee that is tasked with getting pharmaceutical companies in the community to donate money, to get local businesses to donate services, and to get people in the community to attend.

From a personal level, I task myself with raising as much money as I can for the foundation. This year I set my goal at $5,000. It was the biggest amount of money I have ever tried to raise and we surpassed it by $1,320. We raise this money to show our support to family, friends and community members of our commitment to the hemophilia community in honor of our youngest son, Evan.  His insistence on leading the same life that every other friend of his lives is inspiring to us, and we feel that his attitude about his hemophilia is so motivating that we want to do whatever we can to shine a light on what makes him special.

Being involved in planning and participating in the walks has been great for our family. It helps us to feel like we are helping to make a difference in the community by not only raising money, but by shining a light on a cause that is important to us. I have taught so many friends, both close and extended, about hemophilia just by trying to raise money every year. We have also gotten my husband's employer involved, and every year they donate money as part of their own community involvement. And this year they matched dollar for dollar what every one of their employees donated to our walk. It was unbelievable.

On the day of the walk, I felt a lot of happiness and satisfaction for all of the hard work that we put in to planning this event. There were about 350 people there to walk around the park in their blue shirts to show their support for the bleeding disorders community. And when the walk was finished, there was face painting for the kids. There was also a local photographer that set up a photo booth to take pictures. There were donations from Chick-Fil-A for lunch and there was a sundae station for people to enjoy a cool treat in the hot and humid May weather in Florida.

I would definitely classify the walk a success for the foundation. This year had the most people in attendance and the most involvement from the local community. But for me, this was the most successful because I stood watching all of these wonderful people that are just like me...just like my son. And I reflected back on that day in the hospital and the fear I felt over that word...hemophilia. And it didn't scare me anymore. It didn't intimidate me or make me want to run away. I felt in control...that we are living the life we had always thought we would, and hemophilia is just a little hurdle we have to jump over every now and again.

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