Cystic Fibrosis. Strength and weakness entangled in an endless power struggle, the platform of our divided journey.
On a rollercoaster that we are unable to disembark, I grip a tear-stained ticket that I wish to God I could return. Life mimics this rickety ride, gaining speed, going faster and faster, leaving my future fears scrambled with current realities. Motion sick from the ride, I embrace my conflicted heart, realizing that there is only one option...I await guidance to lead me toward that path of most resistance, strength.
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. My tears, the only tangible evidence of the wounds inflicted upon my heart over their sisterly love and yet conflicting wars.
I balk at this CF fight, for it is a fight against time, not steadfastness. For if dedication guided this journey there would be no question, we would prevail. But the unfairest of truths is that nothing in CF is based in reciprocation. We put in endless hours of therapies, countless drugs enter her perfect, undeserving little body, often in rapid succession. However, nothing stops the inevitable at this point, so we wait, not so patiently. We hold tight to the promise we hear so often that we are stronger than we feel. I hold this space for longer than I would like to admit, honoring the reality of CF. Then I see it, a small light beckoning me to preserve through the darkness of my future woes and live in this moment.
From some place deep in my soul, I regain my faith in the future. I stand tall, wearing armor designed for this fight, I make the choice again to be strong, knowing I will have to remake this choice every single day. It does not come easily, however it is the only option that supports the life they deserve.
Maylie looks to me to understand how to see her disease. I re-choose to model strength. Not because I live in naivety about the future, but because my eyes are wide open to the implications of this disease. She will need the fight of 1,000 men to stay strong in the darkness of this disease. So I will leave my innate desire to run, abandoning the pain, as that is an option she has not been afforded. I will show her how to cultivate the fire that burns within the strongest of fighters. I will take my tears and turn them into weapons. I will show her how CF gives us blessings even in the darkest and most painful days. I will teach her how highly I value her life by being her partner in this journey. I will hold her hand through each unfair violation of her body. I will sit with her during each treatment, passing time together, teaching her that this is a family disease and that she is a blessing, not a burden.
I walk toward the vision of empowerment, focusing my fury on something that gives me some semblance of control in a world that spins rapidly around me. I recognize that only I have the power over what ensues, I have the blessed option to choose strength, to choose resilience. So, forward we march.
Creating a plan together to honor her needs and desires to be respected in a world of fear. While we know we cannot always be 100%, it is a guide that can help her feel like she is part of the team.
We read for all treatments- everyday. Yes, it is treatment time, but it is also protected time for my two girls and I to connect. Phones, computers and the demands of life are quieted and we dive into book after book, enjoying the respite from the day. Treatment gives us two hours of protected time everyday to be a family.
Living with CFRD is yet another hurdle in life with CF. But we face it as a team. As a family we choose to eliminate simple carbohydrates from our daily choices. We fill our diets with high fat dairy options, butter and oil laden veggies, nuts, avocados and meat. We avoid the foods that create elevated sugars, knowing that we can maintain a high fat, high caloric diet without excessive carbs and sugar. It takes dedication and commitment and a little ingenuity, but it is worth it to us.
It is easy to become entangled with guilt over the unfair demands of CF, but teaching a child to be their own advocate and caregiver is a gift that we often overlook, assuming that holding the burden is our job. But, that steals the opportunity for them to learn slowly the demands of CF. Giving small doses of responsibility over the span of childhood allows them to take pride in self-care and fail while there is still someone to catch them and encourage them to find the path to disease management. Find a schedule template that you can fill out together- help your child to embrace an age appropriate amount of CF tasks- allow them to enjoy the gift of disease management.