Working for the Cystic Fibrosis Foundation as the spouse of a man with cystic fibrosis has been a really great experience. It's given me the opportunity to earn a living while working on something that I am very passionate about. I've met some really amazing people along the way and made a lot of friends. The CF community really is like no other.
But, I've seen some sad things too. I've cried for the loss of many people, and I've seen little kids have to be braver than they should. I sort of knew going into this that I would see the sad stuff because I am no stranger to the disease. But, something that I was not prepared for was the tough questions I would get from children with CF.
One question that's really stuck with me throughout the years came from an 8-year-old boy. I was new to the Foundation and at a Great Strides team leader's house working on their fundraising plan. The team leader was a mother of two boys with CF, and it was the family's first time doing the walk. Her sons were both home and playing video games while I talked to their mom. I shared with her that I have a husband with CF, and immediately we started talking about it and bonding over shared experiences. During our chat, her younger son came in and joined the conversation.
He asked a couple questions about what the walk was like, and then he looked me right in the eye and said, “I have CF. Do you think I will ever find someone to love me and get married like you?” I was stunned and looked over at his mom for some help. She looked just as surprised as me and was starting to tear up. It never crossed our minds that an 8-year-old would worry about CF keeping him from finding someone to share his life with. His mom just nodded at me to answer the question and I quickly tried to think of what to tell this young man sitting in front of me.
My mind was racing. …Of course he would find someone! Who wouldn't love this awesome person? I didn't know how to reassure him that finding a girlfriend wouldn't be an issue. I know plenty of folks with CF who are married and have families.
I muddled through my answer and -- to be honest -- I am not even sure what exactly I told him. But if he asked me again today, I know what I would say:
Yes, you will find someone to fall in love with.
And your CF will only be as big of a deal as you make it. I wasn't worried about entering into a relationship with my now-husband because he never made his CF a big deal. It was just something that was a part of him. And when you think about it, we all have baggage of some kind; it only affects us as much as we let it.
Yes, you will get married, if that's what you want.
There is no reason CF should stop you from getting married and living a normal life. CF has its challenges, but they are manageable and there are plenty of resources to help you navigate it all.
Yes, you can have a family.
True, you may encounter difficulties with fertility -- a lot of people with CF do -- but there are many options available out there. You can see examples of all of them within the CF community, and there are plenty of people who are happy to share their stories and point you in the right direction.
Marriage can be challenging -- with or without CF. Heck, being a grown-up at all is hard some days. But now, more than ever, you should plan on living a full, happy, normal (whatever that is!) life.
