I’m sorry to call to tell you this, but…
…her newborn screening indicated two genetic mutations.
…his genetic testing is showing the same two mutations as his sister.
…her sweat test score is no longer in the intermediate range. …the culture is showing an unidentified gram negative bacteria that we need to send to an out of state lab for further testing.
…the culture is growing a rare and deadly bacteria and we will need to admit her to the hospital.
…the bacteria is back.
I think we all can recall those stop-you-in-your-tracks, life-will-never-be-the-same moments of our life. The phone call, the diagnosis, the prognosis. Many of those critical junctures in my own life have centered around the genetic disease that two of my children have, cystic fibrosis. But when I look at these more broadly, I can see that really these moments center around my expectations of what their life, our life, would be. From the moment that we know that we are bringing a new life into this world as parents, we begin to envision their journey in life. Who they will look like, what they might love to do, where their future might take them. Naive to the fact that both my husband and I were carriers of a cystic fibrosis genetic mutation and having already birthed three seemingly healthy children, I never expected to receive that phone call from our pediatrician about our twelve day old newborn daughter. A few months later on the day before he started first grade, our oldest was confirmed to have cystic fibrosis as well. Even after weathering the storm of two diagnoses in one year, our view of the future was brightened by the outlook of doctors who spoke of mild mutations, minimal disease, and the possibility of long lives. But the unexpected has a way of catching up with us though, of bringing us to our knees, of taking our breath away.
Our genetic mutations turned out to be of “varying consequences” (yes, those are the exact words that the database of CF genetic mutations uses) and indeed, the variety of our “consequences” turned out to be more severe or symptomatic than previously promised by our physicians. The bacteria that our daughter battled in her lungs at the age of three is one that only 3% of people with CF acquire and is often accompanied in studies and textbooks with words like “virulent,” “multi-drug resistant,” and “increased morbidity and mortality.” If you just happened to ask anyone who knows about CF what the worst bacteria to have is, this is the one that they would likely name.
So how did I respond to these life altering moments, when we found out that our future was not going to look like what we had imagined?
First—no, always—my response was to leap into action and arm myself with any and all knowledge I could find. In the early days of Lucie’s life, I mostly gave up sleeping and instead combed through blog posts and Facebook groups and medical studies to glean any information on our two genetic mutations and possible outcomes. When the rare, deadly bacteria showed up a few years later, I took comfort in her aggressive eradication plan consisting of a two week hospital stay followed by 90 straight days of inhaled antibiotics and extra airway clearance treatments at home. When the bacteria returned a year later despite having been officially declared eradicated, I prepared for battle again, ready to launch the offensive on what Lucie called “the plant” in her lungs. And when her brother got sick a month later and was immediately admitted to the hospital for his first ever admission, I readied myself again for the fight as he spent an entire month of his 5th grade year in the hospital.
A few months later, I sat in the office of our cystic fibrosis clinic at Texas Children’s Hospital, consulting with Dr. Cannon, the attending doctor, and Dr. Staples, our beloved fellow who walked through those three years with us every step of the way. My tears threatened to emerge, as I wondered why there were still crackles in Lucie’s lungs despite all we had done and if Xavier’s now lowered lung function was just going to be his new normal.
Dr. Cannon looked me directly in the eyes and said, “Rachel, I want you to know that this is not your fault.”
And just then, those three words became another life-changing moment. Not your fault.
As moms, we want to believe that we can make this world a better place for our kids. That if we do enough, read enough, clean enough, even pray enough, we can make the bad go away and set an easier, simpler path before them. I thought that embodying all those words that get thrown at medical moms—super mom, advocate, warrior, fighter—would lead to the outcome that I desired. I thought I could make it all better if I was just strong enough, smart enough, diligent enough. Ironically, admitting that their sickness wasn’t my fault felt like admitting defeat because I was surrendering the control that I desperately clung to in those moments. Parenting is the ultimate lesson in realizing that we just aren’t in control.
Now, I’m still the same person that I was nine and a half years ago when our family’s cystic fibrosis journey began. My instinct is still to try to be the one that makes it all better. But day by day, even year by year, I’m trying to give myself the grace to accept that I’m not the one in control. Right now, “the plant” hasn’t shown up in Lucie’s lungs in a couple of years and Xavier’s lung function is higher than ever. I am no longer naive enough to think that our battles are over, but I’m reminding myself that I don’t have to carry that burden alone.