I was one of those children who when asked what they wanted to be when they grew up said a mommy. I wanted three children from pretty much day one. When I had my second baby I couldn’t have been happier. I remember so clearly nearly 25 years ago now walking down the street with my 5 week old boy in the stroller and my just turned 3 year old daughter holding on while crossing the street thinking…I’ll do this again. I was already planning in my head for a third. I would complete my perfect family. It was that week that I got the dreaded news that my son had tested positive for CF in a newborn screening. I had never heard of cystic fibrosis before and looked it up in my ‘what to do in the first year’ book. (My bible at the time) There was one paragraph about it and after the first sentence I knew my daughter had it too.

After the Initial (or should I say ongoing) shock and horror of it all we embraced our new normal. I imagined how close our two would be having this bond and understanding each other better than anyone else. It was before the discovery of cross infection in CF so I didn’t even think to keep them from being physically close to one another. I convinced myself that we were the lucky ones having two. We were now a functioning all-on CF family. But like all things CF nothing goes as planned. As they got older their relationship got complicated. One wasn’t the carer which seems common in CF siblings. They BOTH had it and that made things tricky. But this is supposed to be about me not them…

People have always judged me for having two. I say it doesn’t bother me anymore, but I have to admit that still when I’m asked why I have two I find myself explaining far too quickly that I didn’t know until my second was born. I know some parents who knew one of them was a carrier, but not the other because they had an obscure mutation that wasn’t detected. I know some who knew and chose to take a chance. These are the hardest judged. We all judge people. (Me included), but I like to think that because of this I’ve become a little less judgmental. As a CF mom of two it’s hard to escape my own guilt. Seeing your only children suffer on a regular basis is nothing anyone should have to endure. On the other hand I am able to appreciate and be grateful for so much. I learned a long time ago how to let go of small things and people who are harmful to my wellbeing. I know everyone has some type of burden they carry with them and CF has taught me to be more understanding and aware of this. I have two amazing kids who are now full-fledged adults that my husband and I have raised and I couldn’t be more proud of them. They are the real hero’s here!