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one family's decision to choose hope over despair

View the 2017 Newsletter

Siblings and CF

Chronic disease is high maintenance. The battle to quell progression requires time-intensive treatments, expensive medications, and frequent hospitalizations. This daily fight places stress on the entire family unit; including siblings. While research on siblings of children with chronic disease is often contradictory, it shows that siblings generally tend to internalize stress, depression, guilt, and anxiety related to the illness and often feel overshadowed by the disease.

I’ll never forget the afternoon I heard Brooke’s quiet yet heart-wrenching sobs coming from her bedroom years ago. I peeked around the corner, sat upon the edge of her bed, pulled her into my embrace, and asked, “What’s the matter?” Through wet eyes and dark, matted lashes, she painfully whispered, “I don’t like myself. Everyone likes Paige, but nobody likes me.” My broken heart rendered me speechless. I silently held Brooke’s deflated spirit for several minutes before choking out, “Oh Brooke, you are so special. Please don’t say that.” While words of wisdom escaped me, instinct had me carrying her wilted frame to the glider chair tucked away in the corner of her bedroom. As we gently coasted back and forth, I hoped with all my heart that the soothing motion would somehow heal her pain.

Once the sobs ended and the tears dried, I resolved to do everything in my power to make this boo-boo “all better.” As part of my newfound mission, I gathered advice from other parents, talked to a counselor, purchased and read the top recommended books, carved out one on one time for Brooke each week, and avoided a few social settings that seemed to be bruising Brooke’s self-esteem. A couple weeks later, the sparkle was back in her eyes, the spring was back in her step, and I happily laid the whole incident to rest.

Then, a few weeks later, the pharmacist called Paige by name while handing off one of her prescriptions, and I saw the light go out in Brooke’s eyes. I inquired, “What’s the matter?”, and her sad voice replied, “I wish I had cystic fibrosis.” While feelings of failure gnawed at my stomach, I stood there quietly wondering where things had gone wrong. As my desperate thoughts started spiraling through a list of possible interventions, reason and logic screamed loud enough to get my attention: “Your job isn’t to teach Brooke how to deal with Paige’s disease, your job is to love and comfort her; show her what a gift she she is. If you can do this, she will learn on her own how to handle the hurts life sends her.”

By focusing on Brooke’s needs over the years, I have learned that she must have 10-20 minutes of individual time with me each day to feel special. She also needs dedicated family time each week to remind her how important her role is to our family unit. As Brooke receives what she needs to thrive, I see compassion, empathy, independence, and resiliency replacing the shadow of stress, guilt, and anxiety CF tries to lay upon her. By recognizing Brooke will always have her own burdens to carry, our family has been able to better support her as she copes with the effects of CF in her own unique way.