Strength from the Shadows

I am the mother to two children. Maylie is 13, and is in constant battle against cystic fibrosis disease progression. Ellesse is 11, and also diagnosed with cystic fibrosis, just not genetically, biology spared her with normal CFTR function, yet her life is utterly defined, shaped and torn apart by her sisters consuming disease. 

Balance is a cruel pun not afforded to families who were awarded membership to the cystic fibrosis community. We try to maintain a version of normal, but that is virtually impossible. A much-anticipated day at the trampoline park, a distant cough is heard, all eyes on alert as we scan for the potential predator to our outpatient life. We see the child; the day is aborted. Nothing is worth the risk of our family being separated for yet another hospitalization. We slowly walk together toward the door, exuding disappointment, allowing the power that CF has over our lives to sink in. Our attempt to avoid admission number four this year is done at all costs, I have already missed seven weeks of Ellesse’s life this year alone, thirty-nine weeks since Maylie’s diagnosis. Now we will wait, hoping that we left soon enough.

Blood sugar levels slowly begin to rise, coughing increases, treatments begin to consume more than four hours a day. Ellesse’s demeanor is supportive but apprehensive as she becomes increasingly aware of what lies ahead. A doctor’s appointment, teary eyes and Ellesse is quickly and quietly shipped to friends and family. Maylie’s health dictates the course of the next few weeks, her physical needs above Ellesse’s emotional needs.   I allow my tears to speak to the weakness that lives within my heart, aching for my daughters. One in a constant, uphill battle for her life and the other watching quietly from the sidelines, observing the pain, running from the fury that she sees in her sister’s eyes, relegated to the reality that she cannot fix the unfixable. Her best friend is racing against time. My tears, the only tangible evidence of the wounds inflicted upon my heart over their sisterly love and yet conflicting wars.

Ellesse lives a life dictated by cystic fibrosis. Her eyes, are a window to her soul. Searching for answers, slowly beginning to grasp the immensity of this disease. Her life consists of countless prodigious moments, but equally a darkness that she did not choose. She spends hours in waiting rooms, pharmacy lines and clinic appointments; her face showing the complex and unfair role of being a sibling to a sister living with a chronic, life-shortening disease. A role that she embraces without hesitation.

Watching from her supportive place on the treatment couch as her sister enters into a routine and predictable coughing spell, continuing until her face reddens and exhaustion takes over. She holds out her little hand in sympathy, a role I was not asked to perform until my 30s, yet at the young age of ten, she has mastered it with precision. Placing her fears in a box and offering her sister hope through her smile.

Holidays are often cut short by hospitalizations, family reunions go unattended, much anticipated play dates are cancelled due to a cough that threatens to propel us to yet another exacerbation. Home school, a reality that she accepted with complete grace and understanding, leaving behind friends without question, knowing the importance of protecting her big sister. This reality is haunting. Growing up facing the mortality of a sibling is consuming at times-- and frightening all the time.

We strive to make our lives about all the moments in between what CF dictates, but the reality is that treatments, hospitalizations, appointments and blood draws fill our lives. Despite medical advances, our CF dedicated responsibilities demand more and more each year.

Rich blessings abound in countless areas of our life, but with that, there is always an underlying fear, a silent demon lurking in our house. A growing energy threatens to tear our family in half for days or weeks, whatever CF deems appropriate for the next hospitalization. Her strength through these hardships is truly a vision, she carries all the burdens with a beautiful sense of grace and understanding.

I envision what her life would have been like without the ugly face of CF invading it. Would she be happier or less anxious without the constant sense of unease for her sister? More importantly, would she be as empathetic and supportive as she is because of what CF has demanded from her at such a young age?

What would their relationship be like without the burden of CF changing the dynamics of our family in an instant? What if CF had not taught us all the importance and gratitude of being present in each perfect and imperfect moment?

So many questions that hold no answers. I stand convicted by the gift that stands before me, holding my hand when she can sense my fear. Balancing the weight of the world at times, but doing so in direct response to the love she holds for her sister.  I laugh in the face of CF- it thought it could break us, but it made us stronger.

I circle back to her smile. Recognizing in this moment that life gave me Ellesse as the counterbalance to CF. I was given a light to illuminate the darkness.