CF Parent Education Co-Founder's PANDEMIC POST

Before being a mom, I worked as a school psychologist with pre-K to high school aged children.  My experience ranged from working on an itinerant basis in the inner city, to serving as a building-based school psychologist with thirty students on my counseling caseload. I learned much from each experience. The most valuable one was working with early intervention services, providing parenting workshops for parents of preschool children. I realized the parents needed skills to meet their own needs before they could meet those of their own children – like when flying, passengers are instructed to put on their own oxygen mask before that of their child. Giving parents tools to help themselves so they could help their children at a critical time in child development seemed essential. A seed was planted in the ‘save for later’ room of my mind.

My professional background helped me parent two children with special health needs as I realized the importance of focusing on the positive and choosing to live more fully in the moment. It took me a while to find my footing, though.

When I was a new mom to two children with CF, I struggled to organize and manage everything. Hospital bills and medical costs almost bankrupt us twice. We had to make wrenching decisions based on finances that moved us away from one family of origin towards the other. Our move south five years after our oldest was born reduced financial stress and allowed me to stay home with our girls. It gave me time to organize the rest of our lives.
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With this new-found time, I wrote down schedules and organizational lists and posted them on the inside doors of kitchen cabinets. A babysitter could access that information, and my husband could see which specialty pharmacy would refill which prescription. I felt relief knowing everything was written down in case something happened to me. 

While figuring out the finances, the girls’ high nutritional needs, and treatment adherence, we realized the need to be positive. If we were stressed, the kids easily absorbed our feelings.  When home from work, my husband shared responsibilities. We became a problem-solving team, where he took over so I could step back, grieve, or vent in private. We had monthly ‘dates’ in our own home when the kids were in bed.

My mom sent me a subscription to a daily prayer periodical. I listened to podcasts about mindfulness and balance. Every morning, as my husband left for work at 5:30 AM, I rose with him and had an hour to myself before the girls awakened. This became my treasured time alone to pray, to find gratitude for my life, and to ask for strength for whatever the day brought. It became my lifeline, and I still relish this hour in my day. 

Now that the girls are older, we still try to model healthy ways to deal with daily hassles, but they realize we do not always have all the answers. When the girls were young, they needed us to be strong, confident, and consistent. If we wavered and gave an inch, they would take a mile and then it was back to square one with treatment adherence. We navigate the unknown with them and our way of responding still matters.

A few years ago, the girls and I were asked to discuss the impact CF has on our lives to a room of hospital donors. This followed a harrowing year when one daughter needed iv antibiotics for ten (10) months at home through a PICC (peripherally inserted central catheter) line. It had been a scary, uncertain time. One of the questions from the audience, was, “How did you stay positive?” I immediately answered, “Prayer and time for myself.” And it was true.  It saved me. My daughter answered, “I kept doing my school-work and taking it a day at a time. We did as much as we could to keep things normal.”

What tips could I give other parents? Carve out a time for you, even if it is not an hour like I was able to manage. Figure out what your fears are, and deal with them. What is interfering with your peace? Find solutions to break down the barriers and then take time for yourself. Develop a routine and spend time with your child(ren). Your daily actions teach your children how to behave and deal with life’s up’s and down’s. If you are positive and model resilience and hope even in the face of adversity, your children will see that. This is my ideal, and while I fall short a lot of the time, every day is a new day.

In 2016, the seed planted in my mind sprouted, and my husband and I started this non-profit, CF Parent Education Group. We offer workshops with speakers every other month for parents on topics relating to CF. We are passionate about helping parents learn about CF to increase their knowledge of this complex disease and develop relationships with other parents. We have met many, many parents who ‘get’ us, and whom we ‘get.’ We are on this journey together. Every moment is a gift.

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