Our story begins in October 2023. As a well-seasoned mom, I gave birth to my third child and finally felt all the love, joy, and excitement to have my baby in my arms. What I didn’t know at the time was that a month later, we would receive the unforgettable news that our son, Julius, was born with cystic fibrosis. I had no idea what this harsh diagnosis would soon do to our family or the changes it would bring.
Learning to adjust our life with a newborn who requires daily breathing treatments and medications took time, especially when it came to giving him Creon before each meal or snack. However, as the months passed, we found a routine with these daily requirements, which has become our normal.
Our lives move quickly, but watching our son grow and reach all of his milestones has made me appreciate life much more. Seeing Julius's resilience and not letting anything get in the way of his determination to reach for something or even the most straightforward thing as rolling a ball fills my heart with joy.
A year later, our son is thriving and doing all the things a 1-year-old typically does, such as walking, talking, getting into things, playing with his siblings, and so on. While raising my two older kids, I watched them show interest in the usual toys — like plastic balls, toy cars, blocks, and musical things. Of course, like any other child, Julius enjoys playing with his toys and all the cool stuff his older siblings have and enjoy sharing with him. However, he also has great curiosity about his CF equipment, like his vest, and enjoys trying to squeeze his nebulizer solutions into the nebulizer.
He will climb onto our couch, grab his nebulizer mask, and put it to his face or attempt to walk around with it. This sounds great, right? Not having to fight with him to sit still to do his treatments, place the mask on his face, or do what we parents like to call the “alligator roll.’’
Even though some may think that it is great that Julius is so cooperative with his CF treatments and equipment, as a mom, I feel sadness. I’m constantly thinking, why should my 1-year-old know what these items are? He shouldn’t know or comprehend any of this. Julius and others like him should be worrying about running around, wanting to touch the dog, playing with their blocks, and all the other fun toys they might have.
For me, parent guilt creeps in and weighs on me. I blame myself for my son having cystic fibrosis, but I know it’s not something I could change even if I had the power to. I’m learning to embrace and accept that this is our life, and Julius is embracing what is normal for him. It’s OK to explore these things and allow our children to learn.
I don’t want my son to feel scared or abnormal because of his CF. I know he will have many questions for his dad and me one day. We will eventually have to navigate that when the time comes. But at this current moment, I will enjoy the time I have and wait for the big scary questions later.
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