Time is not something we can purchase or get back. I was diagnosed with PNH 7 years ago. In some ways, it feels like yesterday, and sometimes it feels like I’ve been on this journey for a very long time. I’ve learned so much about myself over the years that I feel like I’m a “new” Brenda. But it wasn’t easy getting to this point.

When I was diagnosed, I knew things would be different. I wanted to be there, to be present, for my 2 kids. I told myself I was going to focus on the positive in life and that I would never settle for an “it is what it is” kind of life. I wanted to do everyday things with my family.

But then I found myself lying in bed crying because I wanted to be in the backyard playing tag with my kids, but I couldn’t because I was too fatigued. I would have trouble focusing on what my kids were saying or would lose my place in a bedtime story because of brain fog.

I knew I needed to talk to my doctor and make a change. As I sat with my doctor with tears in my eyes, I said, “I’m glad you get to go home and play with your children. I want to be able to do that with mine, but I can’t. This fatigue and brain fog won’t let me.” I felt like PNH was dictating my life, and I wanted to take back control.

I wanted to see a PNH specialist and explore other treatment options that might work better for me. I mean, I have to live with PNH for the rest of my life, but shouldn’t that life be filled with things I want, like spending quality time with my children? I knew that exploring these different treatment options meant I would have to get out of my comfort zone, but I figured I’d rather be uncomfortable for a little while than for the rest of my life. If I wanted change, I had to work to try to make that change happen.

And guess what? I found something that worked for me!

I’m so grateful for that. And I’m grateful for being able to actively participate in my children’s lives – missing fewer of their school activities and reading more books to them. My kids have noticed the change, too. They even wrote essays about how strong I am and how I’m always present and cheering them on. This fills my heart with joy.

Thinking back to that conversation with my doctor puts a smile on my face. I’m so proud of myself for recognizing that I wanted more and voicing my needs. Getting here wasn’t easy, but I see how much my life has changed for the better and the impact I’ve had on my children, and it was all worth it. I hope this inspires you to push for what you want in life – you never know what’s possible until you try!