Jordan & Adrienne McLain
When we brought our baby girl home in the Spring of 2016, we didn’t expect to hear that she needed further testing to determine if she had Cystic Fibrosis. We had barely heard of the disease, and definitely didn’t know what to expect next!
We didn’t expect that Abigail would have a fever on her First Christmas, or have her first hospital stay at 11 months old. We had no idea that our daily lives would include two breathing treatments a day, every day, or an uncertainty in the back of our minds, that we would never know what the next season might hold.
We also couldn’t have expected to find such a dedicated group of parents, siblings, spouses and advocates within the CF Community. From research, to advocacy, to fundraising, we found that everyone is fiercely determined to find a CURE!
As I reflect and think about what was going on in our lives at this time last year, I remember that we were immersed in many of the fall kid-activities! The girls were taking dance, gymnastics, piano and they were on a cheer squad. Life was full and busy and “normal.”
We were honored to be featured in a video produced by the CF Foundation about Abigail and the need for treatments for people with rare mutations. In making that video, we paused that busy life long enough to reveal our hopes and dreams for our daughter. We talked about our hope to see her graduate from high school & college, get married, and have a family of her own one day. But for me, my dream is so much more. If Abigail has a family of her own, her dream is going to be to watch them grow up, graduate and get married. She’ll want to see her children do all of those things. So my wish for her is simple: A Full Life! After that emotional video, we rushed away from the filming to a homecoming parade in which their cheer squad was marching, and we were back to our relentless “normal” pace.
As winter came and rolled into early spring, Abigail’s health became a little more shaky. Her cough came back and wouldn’t go away. She would become exhausted from long, deep coughing episodes. We tried different antibiotics and steroids, but nothing would knock it out. She became weaker. Her face was pale and she had dark circles under her eyes. At one playdate during Spring Break, I carried her or she sat in my lap while her friends ate, played on the playground and did a museum scavenger hunt. Her follow up appointment the next day revealed that her lung capacity had dropped significantly and it was decided that she should be admitted to the hospital.
And just like that, our “normal” world came to a screeching halt. Abigail received a PICC line. Our family was split between our home and the hospital. We traded our busy schedule of afterschool activities for a busy schedule at the hospital: four breathing treatments a day, vital checks, and nurses coming in and out at all hours of the day and night to hook her up and take her off of the IV antibiotics. After nine days in the hospital, she was released. It would be another month before it felt like she had fully recovered.
And then came summer! Abigail again returned to what is our “normal.” Breathing treatments, appointments, medication, but she was otherwise playing with friends, going to camps, and swimming! We were able to take a family vacation to Colorado where we hiked, climbed, and took in the fresh mountain air. Abigail is living her best life when she’s jumping from one high rock to the next!
And now, here we are back in fall. We’re back to school, dance and football performances. Life is busy and full and fun! We don’t know what this winter and spring will hold. That’s how it is with CF. Things can be “normal” for a little while, but you never know when they can change and change quickly.
We are determined for Abigail to have a full life! Our wish is for the seasons to come and go without the fear of our “normal” being put on hold. With the unwavering commitment of the CF Foundation to find a CURE, and with your support, we believe that dream can come true.
I am committed to helping find a cure for cystic fibrosis and am raising funds to support the Cystic Fibrosis Foundation’s Annual Fund. Contributions to the Annual Fund provide important, unrestricted resources that help develop new treatments and pursue every opportunity for promising research that can lead to a cure. Please consider making a gift today. Your support will help make a difference for all those with CF and their families. Thank you!
Abigail just finished a school project where she was asked to research a career of interest. She chose “lab scientist.” Maybe one day she’ll be on that team of relentlessly focused researchers looking for a cure for CF. Or maybe CF will already mean “Cure Found” by then. That’s our dream! Regardless of what she works on, I’m certain that her experience with CF will give her the determination, grit and empathy to give that project the gift of hope and life that the CF Foundation has given her.
Until It’s Done,
Jordan, Adrienne, Carly & Abigail