Attending a CF clinic involves a revolving door of doctors, including the pulmonologist, nurses, geneticists, nutritionists, social workers, and more. While we don’t need those specialists for every quarterly appointment, their presence offers essential ongoing support for Jordan’s care.
For the first two and a half years of Jordan’s life, we made it a point to be present at every appointment. Whether monthly or quarterly, we tag-teamed these experiences to support each other, learn everything about Jordan’s disease, and present as a united front. For years, Josh and I have attempted to keep in the giggles when the social worker, who mostly helps us with insurance and advocacy, attempted to therapize us while playing with Jordan during appointments. Our strong bond and willingness to openly express our emotions made us feel ready to handle any challenge we faced with Jordan’s health. When times have been tough, we have never shied away from embracing our feelings and felt ready to cope with what came next.
However, the onset of COVID introduced an unexpected plot twist. Hospital restrictions and the general fear for the health and safety of our family meant that only one of us could attend Jordan’s appointments. Suddenly our confidence in navigating Jordan’s health wavered. We stopped seeing close family and shut ourselves up from the world long after isolation restrictions were lifted. Masked and distanced, we stopped hugging people and set boundaries that involved not eating in a restaurant or traveling until halfway through 2023.
My solace during this time was pouring ourselves into work and our community. While I couldn’t physically be with friends, family, and colleagues, I could show up for each and every person by supporting their technology needs, researching and sharing best teaching practices, and giving small gifts and cards at every opportunity. I became so entrenched in serving others that I quieted my fear by giving more.
Reflecting on the aftermath of the pandemic, I still find myself unpacking the trauma that COVID left behind. Jordan began taking Trikafta - the miracle drug that means his life expectancy tripled and then some. The fears and anxieties that held me captive for three years and three months started to release because I no longer had to jump after coughing or sniffling. The end of the school year meant I could find peace and fully reenter a world I had kept my family from for years out of necessity. Despite the progress of the world around me and the medication that finally meant that Jordan would be able to handle a cold - or COVID - with some normalcy, my head and my heart began to find conflict.
Serving and supporting others is a worthy and honorable pursuit, but when it is used to quell fear and anxiety, it becomes a stopgap in coping with trauma and fear. I moved the goalpost to process the grief and loss I felt during 2020 and the years that followed, in which my family still had to follow careful COVID protocols as we waited for Jordan to become old enough to take Trikafta.
These last few years, I have worked to be the best mom by compensating for what my children missed out on by making elaborate virtual birthday parties and by filling their every second with activities and action. I worked on being the best teacher, coach, and colleague by making sure that I could anticipate every person’s needs and provide them with every bit of support they could possibly need. I wrote over a thousand cards and baked my body weight in chocolate chip cookies. These actions gave me purpose and direction but did not calm my anxiety or help me move forward from pandemic life.
While I started moving about the school like normal and engaged with others for work purposes only, I still felt uneasy about the germs I was exposing myself to daily. I worried constantly and made sure that I didn’t get sick. We still haven’t tested positive for COVID, although I am pretty sure we had COVID in May - when I had the most significant panic attack of my life. Still, these flashes of fear continue to hit me - when I smell smoke or hear accessive coughing. I am still worried that I will make my immunocompromised child sick if I get sick. Now I get it. I understand why caretakers are often carefully watched by medical professionals. I know that I must rediscover the balance between what my head logically knows to be true and the pain my body feels from the pandemic living to the present.
The journey toward healing remains ongoing. Being a caretaker of a young child with health concerns that could escalate from zero to 100 in minutes. I will continue to navigate what this new sense of normalcy means for my family and the peace that it promises to bring.
The journey of a far-too-caring caregiver is one of constant adaptation. It is a challenging path, and it is sometimes hard to find balance. I am starting a new journey, one that is pushing me out of my safe space. As I start this school year, I hope to authentically be myself to open myself up to new people and new experiences. While I still am trying to shake off the fears I internalized during the past three-plus years, I hope to redirect my anxieties with purpose and find new people to pour into - not because I’m trying to survive but because I genuinely want to learn, grow, and make a difference. COVID amplified the challenges of many and certainly magnified my fears. While healing is not a linear process, I aim to move forward stronger and more resilient. I am no longer in survival mode. I can finally step forward and reclaim a little bit of peace as I start a promising school year.
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