My youngest was born on a cold day in late January. My pregnancy with her was less enjoyable than with my oldest, but her delivery was a breeze in comparison. There was some concern about her smaller size while I was pregnant, but when she was born it was clear that she was perfect. I instantly felt that magical feeling of bliss that you hear so much about. A feeling I didn’t experience right away with my oldest because, well, we both were figuring out life for the first time in our new roles. Of course my oldest is to thank for that feeling of bliss when she was born, because she was the first to show me what true, unconditional love feels like.

So for one beautiful yet exhausting week, we settled into our family of four. Tiring, yes, but beautiful all the same. Then one evening, early in February, I received the call that changed our lives forever. I remember exactly where we were, what we were doing and how it felt in that moment as the life I expected and felt deserving of, was ripped away.

“It is highly likely that your daughter has cystic fibrosis” they told me. I wasn’t even sure what cystic fibrosis was. “Is she going to die?” I asked. No, but the truth was sobering. She would have to take medications and do daily therapies every day for the rest of her life and will likely need antibiotics frequently and possibly a lung transplant down the road. She is currently expected to live into her fifties.

Tough pill to swallow. So I lived in denial instead. “Highly likely” they had said. They were only 98% sure she had cystic fibrosis so I held onto that 2% chance of a misdiagnosis like you wouldn’t believe. After two rounds of confirmatory testing, one of her doctors looked me square in the eye and said “She has cystic fibrosis” as if to actually say “you need to accept that she has cystic fibrosis”. I cried every day for almost three months. I was so angry and scared and worried what our future may hold. I was angry because I thought the Universe wouldn’t hand me something I couldn’t handle and I definitely thought I can’t handle this. To add insult to injury, we found out that she has two very rare gene mutations. So rare in fact that she is one of only five people in the world with the same combination. And due to the rarity and nature of her mutations, she is currently unable to take the new and miraculous “cure” modulators that have changed the face of cystic fibrosis; increasing longevity exponentially and allowing people with CF to have children for the first time in history. While truly so incredibly happy that 90% of people with CF can take these modulator drugs, I felt heartbroken for her. Needless to say, it was the beginning of a very difficult year.

But just as you may have heard before, time heals all wounds. Certainly not fully-healed, but at around six months in, the bleeding had stopped. I felt the pull to join the CF community. Maybe helping others would help heal myself? However, I knew my heart was still very fragile so I wanted to start small. I took to the internet to find a shirt or a hat or something that supported efforts to spread awareness of and cure cystic fibrosis. I found nothing… well, nothing I genuinely wanted to wear.

After that search I asked myself why can’t cause-wear be well-designed and high quality, too? What if cause-wear can fit into your closet among all your favorite staples while still doing good?

Enter Fight For Days: Where good cause meets good style. My dream is to sell well-designed, classic, quality clothing that appeals to the masses, whether affected by cystic fibrosis or not; in turn supporting a cause that matters deeply to me (and so many others), but without sacrificing style.

But what really drives me is the desire to hold the hand of anyone who has grieved for their child, or has felt helpless in protecting the ones they love. I want to empower and lift up anyone who has felt lost and alone on this journey. Because I know exactly how it feels, so if I can provide some semblance of comfort or joy for even one person who needs it, by god let’s do it.

So, thank you for joining me. Oh, and as for my daughter… She’s a healthy and wild almost three year old and has been a trooper since the moment she was born. At around the one year mark I realized it was me that was suffering, not her. So now I let her lead the way. I will fight for her and beside her however she needs. And together, with your help, we can fight for days.