Empowering Your Outer Circle to Advocate

I advocate for my son who has cystic fibrosis by sharing his story to increase awareness. From new friends to legislators, I tell as many people as I can about this disease, how it changes your life, and how we are fighting this thing head on.

| 7 min read
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Elaine Ruh, MBA, PHR, SHRM-CP
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I was recently asked how I do it -- how do I have the strength to write about our life to random strangers? Aren't you afraid of your son's cystic fibrosis diagnosis and don't you want to hide from it? Aren't you afraid that people will think of, and treat, Maddox differently once they find out? Why share what you are going through? Why put yourself out there? And my immediate response was, I am a mama bear and don't mess with my cub. I am going to do everything I can to provide the best life that I can for my son.

I know that I will never be a researcher in the lab looking at the medical or scientific aspect of CF, and I am so thankful for people who are working on everything to help put together a future for those with CF. So, I am doing the next best thing I know how to do and that is being my son's advocate.

I want to use my tools, network, and resources to share what CF is. I want people to understand how our life has changed and how we have embraced it as our “normal.”

Maddox is growing up in a household knowing his diagnosis isn't something to hide from and be ashamed of. We have shared with family and friends that cystic fibrosis is not as scary as it could be. I admit, when his vest first arrived, it was a scary piece of medical equipment to me. I never grew up with anything like this, so it was new and intimidating. But, after the second vest treatment, we found our groove as parents, and it became our normal way of life for our then-18 month old.

We don't hide his vest treatments when someone comes over. His compressor is next to our recliner in the living room. At a restaurant, we don't hide his enzymes when we are waiting for our food. We have it right on the table as I don't have time to go through all the extra steps to hide it when my child is screaming to eat. It's our normal.

I had a friend once ask, how I was so brave to just tell everyone about Maddox's CF. I replied that if it was my personal diagnosis, I don't know if I would have followed the same path for advocacy.

When sharing my son's story, however, I am in complete “Mommy mode” -- what can I to do for him to keep him healthy and happy? Where is the gap? What can I do to close that gap to reach a full, healthy life for him?

One area I found in my gap analysis was that people don't fully understand what CF is, how many people have it, and that it's not contagious. When I am talking to people about life and sharing with them that I have a son, sharing his diagnosis seems to find its way into our conversation. Either we're talking about medical bills, talking about dealing with insurance, running and being out of shape, struggles with weight gain, blogging, medications, nonprofits -- whatever it is -- I feel compelled to tell people about CF.

I don't push the conversation on people, and I judge by their responses if it's a chance to tell his full story. The gut-check reaction that everyone says: "I'm so sorry to hear that." And I tell them, "Don't be. We are taking this thing head on, and we're doing OK.” Feeling sorry for him or us isn't going to help or solve anything.

I then tell everyone to follow our story, follow the Cystic Fibrosis Foundation, follow something related to CF on social media, so they can keep track of the progress and updates of this disease. Help us embrace our normal. They are invited to come over and do a vest treatment with us or help us challenge Maddox to eat more when we are eating. Our friends Madi and Jena have this down to a science with him, and he always eats more when they challenge him.

Being his advocate brings joy and peace to my heart. Nothing can compare to a mama bear talking about the accomplishments of her cub. I want everyone to know my son's story, so I am looking to expand my audience.

Our family and near-and-dear friends know his story and are contributing to some of his “chapters” every day; however, there is a very specific audience that will have an effect on Maddox's future chapters. I had a chance to reach them when I went to our state's capital to meet with our elected officials.

They aren't scary. They are humans just like you and me. They are our voice, and I want to make sure that they have Maddox's picture in their minds when they are on committees dealing with anything that could be related to CF. I want his smile to be imprinted in their memories when the important votes come across their desks. I don't need to have the podium -- as public speaking scares me -- but I like having the one-on-one meetings, where I can share Maddox's pictures and tell my elected officials what our “normal” day looks like and the future I want for him just like any other mother. That is very important to me and why I jump at any opportunity to tell his story.

I understand that when Maddox grows up -- and he starts to understand more details of CF and understands what this means to him -- he might not be as open to share his story with so many people. I am careful not to share anything that would embarrass him too much when he looks back on the progression of his story.

But my role with CF will always be as a CF mom. CF messed with the wrong person.

We are going to fight this, we are going to overcome our hurdles, we are going to share the progress, we are going to share where the growing pains are, and we are going to continue to move forward until I know that Maddox (and other CFers) will have a chance for a full, healthy, happy, and fun life.

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Topics
Advocacy | Social Life and Relationships
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Elaine is a mother to her son, Maddox, who was born with cystic fibrosis. After earning her Master of Business Administration (MBA) from Concordia University Wisconsin, she now works in the technology business as a Senior Human Resources Generalist and volunteers on the local Fox Valley Society for Human Resource Management Board of Directors. Elaine recently volunteered as an advocate for the Cystic Fibrosis Foundation and just wrapped up her second year leading a Great Strides team. Elaine lives in Appleton, Wisc., with her husband, Nick, son, Maddox, and their pups, Remy and Lexi. You can follow her on her blog

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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.