On April 28th, 2003 my second daughter, Gracie, was born via emergency C-section. I had been sent to a high-risk obstetrician (OB) following my 17-week ultrasound. My regular OB saw a “bright spot” on her bowels. She was born with a meconium ileus, typical in cystic fibrosis births, and was one sick baby. At one day old, Gracie had surgery to remove the blockage. Afterward, she sported a colostomy and an ostomy bag for a couple of months before having her bowels reconnected. Her official diagnosis came back when she was about three weeks old. Delta F508 and E56X were her mutations, one, the most common, the other, the newest nonsense mutation to be entered into the database.
Those first few months are like a blur in my mind. Everything happened quickly and differently than I'd expected -- than what should've been. There were days when my husband and I didn't know if Gracie would make it through the night. With a two-year-old at home, I was constantly torn between being with my sick baby in the hospital and my toddler at home. When I did get to the hospital, I rarely was able to hold Gracie. Her ostomy bags fell off frequently, causing her stool to irritate her skin and make a mess. Many nights I would sit next to her and hold her hand. I cried a lot, mourning what I'd spent the previous nine months dreaming about.
Gracie healed from the surgery. She grew, began eating well, and we were able to bring her home in mid-July. This is when our real education in all-things CF began. Treatments, medications, caloric intake, and bowel movements consumed me. Caring for her felt so robotic and structured that I struggled to bond with my beautiful new baby. Fear and anxiety about her future also held me back from building a strong attachment.
Opening up about these struggles with the CF clinic social worker was one of the best things I did in the beginning. She encouraged me to seek treatment. Therapy, along with becoming involved with the Cystic Fibrosis Foundation through Great Strides, helped me begin healing. Taking steps in a healthier direction allowed me to bond with my baby Grace.
I share this history because, as she has grown and developed, I can see how those beginning months affected her, as well. Reflecting on the traumatic effects that her prolonged and necessary neonatal intensive care unit stay had on her has helped me to develop a more compassionate and understanding lens to look through as I've partnered with her through our journey with CF.
Early in Gracie's education, I taught teachers and students about CF in classrooms. I'd bring in Gracie's meds, her vest, and a year's supply of hand sanitizer as I advocated for her needs at school. Gracie loved to hold up items or demonstrate her vest for the classroom or school-wide assemblies.
Gracie and I continued to bond over our crusade against CF. We smiled for photos that accompanied newspaper articles, pictures for letters to be sent, and stood in the front of hundreds of people as I tried to empower myself in the face of a disease that often strips control of those affected by it. Because Grace was extremely shy, I became her voice in pleading with those in our community to help fund research for a cure.
At home, our schedule was like clockwork. There was an understanding from the beginning that treatments and medications were like brushing teeth and bathing, part of the day no matter what. We created sticker charts and rewarded Gracie for her compliance. She rarely fought or complained about the intense regimen.
During sixth grade, Gracie suddenly began to find ways around treatments: She reprogrammed the timer on her vest to shorten her treatments. She squirted part of her hypertonic saline vial into the carpet to make it look like she'd used it all. She skipped enzymes when she was with friends so they wouldn't see her take them.
It became apparent that I needed to up my game. Gracie had been begging for a dog for several months. My husband and I were overwhelmed with our four children, all younger than 12 years old. We did not want a puppy. Gracie proposed that if she did her treatments faithfully for three months, we would buy her a Yorkshire Terrier. We agreed. Knowing how challenging treatments had become for Gracie lately, I thought it wouldn't be possible. I was wrong.
She earned her Yorkie and continues to feel pride about the deal to this day. I was less than thrilled at first, but seeing how much she loved that puppy and the growth that occurred in Gracie as she cared for Koda, I can't imagine our home without her.
I once thought I had this parenting gig figured out, but pre-teen and teenage years have felt like a total game-changer.
My techniques worked well with three of my children -- and then there was Grace. She has taught me a very important lesson during her teen years; relationship is everything. We create an emotionally safe place for her to open up without correcting her and she shares her thoughts and ideas. I'll be honest: Sometimes she says things that freak me out, but I have learned to keep a pretty good poker face and stay curious as we talk about the positives and negatives and possible safety concerns. We are able to collaborate with her on plans and schedules. I've learned that I can make demands all I want, but unless I am willing to work with Grace to find mutually agreeable solutions, I'm just spinning my wheels.
Just as I feel a need to be in control, Gracie, now 16, also feels that need -- as is expected. I'm learning to gradually give her more power and control in dealing with her illness as well as in who knows she has CF. This has meant allowing her to take a step back from fundraising and other events at times. I'm happy to say that in the past three years, she's gone from asking me not to tell anyone she has CF or post anything about CF on social media, to inviting 10 friends from school to join our team for Great Strides and posting CF bracelets for sale on her Instagram page.
I've loved watching her relationship with CF evolve.
My relationship with Gracie has changed so much from the first time I saw her frail body lying in an incubator until today when she invites me to go to country music concerts and long drives with her. We have both shed countless tears as we say the wrong things, apologize, and try to do better. There has been lesson after lesson learned as I watch her gracefully learn to love herself and others without setting limitations because of CF. Although I've seen CF steal so much from those in its grasp, I've also learned that joy and gratitude for everyday miracles seem to be amplified when we step back and trust love to lead.
