What more can I do?
This was what played in my mind for 5 years following my son’s CF diagnosis. I needed to do more, but was unsure of how to. I did all that I could, which was participate in fundraisers, go to any local CF event and most importantly take care of my son. However, I still felt as if I wasn’t doing enough. Therapy and masks, diet management, fighting the infections, so on and so forth. It felt so reactive to me, I wanted more pro-action.
As luck would have it, eight months ago an opportunity was given to me. What you ask? I was given the chance to be become a provincial government relations advocate for CF Canada. I was informed that at the time there were no advocates in the province in which I resided. Now don’t get me wrong I didn’t accept right away. It took a friend pointing out that I advocate all the time for my son, with ER doctors, clinic doctors, hospital doctors once he was admitted. Advocated for the best and correct methods to manage colds and flare ups. So, with this little epiphany I accepted the invitation to become an advocate, and it was the best decision I made. I have a voice, I get to ask questions, I get to be heard.
It is a very odd feeling, but a wonderful feeling as well. I feel empowered, I am being pro-active instead of just reactive. Being an advocate, I get this sense of rightness. I feel like I am fighting the disease just that little bit more. To ask ‘What is being done?’, or the most significant one of all, “Do you know what CF is?’. Because people outside the CF community, they don’t always know. This was quite eye opening for me. But then I live it every day. That took some adjusting to, but I got there.
Children and adults with CF need advocates, for their present and for their future. To voice for them that they need help getting access to any new medications, therapies, and just the day to day headaches of less red tape to get access to the currently approved medications. Because as we all are aware, waiting is not an option. The sooner the better. We need to provide the people responsible with making those decisions, with all the correct information, so they make the best choice. I have learned through advocating that I have a small role in the process. I am asking for accountability, not arguing a decision already made.
So, if you feel this way as well, become an advocate. Asking questions and providing facts/information about the disease can make a difference. It’s not easy by any means, but I now know I am doing all I can to fight CF, to fight for that future I want for my son and all others living with Cystic Fibrosis.