My son's cystic fibrosis diagnosis picked me up and dropped me off into an entirely different world. One moment I was pregnant, imagining the life I thought that my unborn baby would have. Just months later, I was nose deep researching gut-wrenching concepts like life expectancy, pancreatic insufficiency, and antibiotic-resistant infections, to name but a few. By no stretch of the imagination has the first year been an easy adjustment, but it has taught me that, together, we can get through anything. The evolution that has taken place in the first trip around the sun with Bellamy is something I feel privileged to share.
"All that matters is a healthy baby." Those words might as well be woven with venom. Those words have an indescribable sting when you do not have a "healthy one." Last November, my fiancé and I welcomed our second child into the world. It feels like yesterday that we brought him home. Just days after settling into our new routine as a family of four, I immediately knew something was wrong. Our pediatrician confirmed my suspicions. "Bellamy's newborn screening came back positive for cystic fibrosis, we have referred you to the CF clinic at Children's, and they will call you later this week." There was no immediate sweat test, but his father and I both carry the F508del CFTR gene.
I was flooded with despair after that phone call, and I felt like things would never be okay again. At the time, I didn't know as much about CF, which absolutely contributed to my initial helplessness. Guilt washed over me in waves; how could I have done this to him? I put one foot in front of the other and was eager to meet his medical team and get exactly what he needed to thrive. At Bellamy's first clinic visit, his dad and I learned the basics of chest physiotherapy and were initiated into the world of specialty pharmacies and medications. Bloodwork, gag cultures, and frequent weight checks would become normal and necessary to monitor his condition. It felt massive to digest everything.
Our clinic is extremely hopeful and optimistic when it comes to the outlook of this disease. During the first visit, it was comforting to be reassured by our team. "Bellamy will do everything your older son will do." They emphasized that they believe there will be a cure in his lifetime, and it is a very different world for CF children born today than for those born in the past. I loved hearing all those things, but nothing could really touch the level of fear and heartbreak I felt at that time.
Being afraid of something invisible became my normal in the months that followed. Bacteria that would otherwise be harmless to the average person thrive in the thick, sticky mucus in CF lungs. Gag swabs are done monthly for Bellamy to check to see what bacteria are growing. He has been lucky so far and has only grown staph asymptomatically. For more severe or symptomatic growths, if it cannot be eradicated with intense antibiotics, the patient can become colonized with those bacteria. This, I learned can result in exacerbations, lung damage, and a decline in lung function. The bacterial and viral risk analysis that I am constantly bombarded with is overwhelming, and was particularly so early on. Bacteria and viruses are everywhere. I still, to this day, must remind myself it's impossible to protect him from them all, and I struggle significantly managing the anxiety associated with this.
In the beginning, I felt like I couldn't let him touch anything unless I cleaned or sanitized it. To the average person, this would sound insane, and I'd agree. I never thought much about my firstborn child encountering everyday bacteria. The fear I feel about what my CFer is exposed to will probably never entirely go away, but I know it will ease and become more manageable with time.
Some high-risk activities will always be a "hard no." However, letting my son LIVE is equally important to me. There is a path to acceptance that I have slowly walked during my first year as a CF mom. I'm still not great at accepting that I can only do so much to protect Bellamy. There will come the point when what's best for him will not be the path that I feel is "safest." Bel is just starting to take his first steps, and his well-deserved time for exploration is coming, whether I am ready for it or not.
I have become exceptionally good at worrying about things I can't control. I haven't found a magical remedy for anxiety yet, but allowing myself the time and space to grieve and set boundaries helped me stay sane in such a vulnerable time.
I kept him home a lot the first year. We said no to family gatherings and situations where I was not comfortable. Trips were canceled, adjustments were made, and it was the right choice at the time. It has been eye-opening to try and control everything and realize that there is very little control I have over his disease. If I could tell a new CF mama anything, it would be to allow yourself the time and opportunity to grieve and do whatever you feel is right for your baby. Other people may not understand, but the CF community always will.
Cystic fibrosis is heavy, and until a cure is found, I can't just "put it down." This mental load can be all-consuming. The emotional weight of knowing my child may not live to see old age and will experience pain is not easy to carry. I can't take CF away, but I can ensure he gets the best medical care possible and advocate for him for as long as he allows.
I take pride in being responsible for my son's chest physiotherapy, enzymes, medications, and clinic correspondence. This also means that CF really feels like my whole world right now. It has made me feel almost like an alien walking amongst a sea of "normal" people. Family and friends often ask how we are, how things have been, or simply want to connect.
Both my partner and I struggle to know how to balance our responses. Do we share every blip in the road with our son's medical condition or just the “big” stuff? Is it more polite to sugarcoat things and not kill the mood? I still don't know the best approach.
It's almost been a year since Bellamy was diagnosed. If only I could have seen into the future and caught a glimpse of my happy, gorgeous, strong little boy. He is the best baby brother, and we are all so in love with him. I could not imagine my life without my warrior. He takes his medications and treatments with a smile and has taught me so much. Being a medical mom is not for the faint of heart, and no one would choose a life in which your child has a deadly disease. Yet looking back on our first year, what comes to mind is not the anxiety or even the health struggles Bellamy has had. What stands out most is how lucky we are to have him.
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