I got out of the elevator on the third floor and saw a sign in front of me that said “cystic fibrosis pulmonary clinic.” Only a few days ago, we had received the call that something was wrong with our daughter's newborn blood work. We had been back and forth to her pediatrician because she wasn't gaining weight during her first couple weeks at home. I looked down at Ali in her carrier and saw how truly vulnerable she was in this world. So tiny. The call we feared came the next day. Ali had been diagnosed with cystic fibrosis. I was numb.
A few days later at the children's CF clinic, I was protectively holding Ali in my arms as a whole team of people -- including the head doctor, nurse, dietitian, and social worker -- entered the room. Their posture and disposition said they were all business before they even spoke. I was terrified but didn't show it.
I sat numbly as they told us about the realities of CF: a lifetime of medical expenses; the possibility of her not surviving childhood; the life expectancy back in 2001, which was 37 years old; that she might not be able to participate in sports. The list went on. They tried to assure us that science was making new discoveries every day. But, at that moment, science didn't matter. This was my daughter. Tiny, vulnerable, and now facing a lifelong disease.
I had so many thoughts as we drove home that day. I was angry. Why her? Why me? Why us? I laid Ali down for her nap and finally had some quiet time to be alone. I wasn't just angry, I was heartbroken. Tears overwhelmed me, and I had no idea how I was going to be the source of strength she needed me to be as her mother. None of this was part of the plan, and I couldn't understand why it was happening. I had pictured her birthday parties, her graduation, her wedding, and all things beautiful in a daughter's life. Would they all still happen? So many doubts.
But, something else came to me in those moments. A thought. A small voice.
If I was a victim, she would be a victim. I had to be brave enough to stand up, for all of us. And it was in this moment I had to choose, and no one else could do it for me.
Was I going to be a victim of this diagnosis or was I going to stand up, fight with everything I have, and give my daughter an amazing life? I had to be a warrior so that she could be a warrior. And this was the first true hope I had. I would raise her to know that she wasn't her diagnosis. It was something she had, not something she was.
Over the years, she's had many struggles. Frequent clinic appointments, blood work, scans, struggles to gain weight, stomach pains, shortness of breath, and exhaustion have always been tough as a mother to watch. Time management when it came to her treatments and learning to take care of herself as she got older was a challenge as well.
But, as hard as it's been, somewhere along the way I began to think of CF as a gift. From the beginning, she knew the value of life. The value of adversity. She had a fight in her that was unmatched. The little pains of life didn't affect her as much as her peers. She often thought bigger and craved to be an inspiration to others. And well, the lessons I've learned as her mom -- that's for another day. Some are gut-wrenching, and some beautiful.
We have been able to serve and give back to the community. We have seen other CF friends fight and lose, all the while knowing life is a gift none of us are guaranteed. I would take the CF struggles out of her life if I could, but I would never take the lessons.
Today, Ali is 17. She's studying to be a professional dancer and plans to attend school in New York City next fall. No matter the circumstance or the diagnosis, still dream big. Your diagnosis is never your destiny.
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