Being a mom comes with challenges; the same goes for being a mom with cystic fibrosis. There is a lot to navigate — and as someone once told me it doesn’t get easier, it gets different. I couldn’t agree more. When my now 14-year-old twins were babies, navigating my health was different. I was fitting in hours of nebulizers twice a day and doing my vest. Some of the medications aren’t safe for children to be around, so finding the time to get those nebs done while they were napping was challenging. During those early years, hospital stays for me meant finding childcare and feeling guilty that I was away from my babies. While I knew they were being well taken care of, I felt helpless not being home with them.
The biggest challenge for our family came when I needed my first lung transplant. We didn’t know what to expect. What I thought would be a two-week hospital stay became a six-month hospital stay, followed by countless additional admissions that first year post-transplant. By then, my kids were 4 and could grasp the concept that their mom was sick and in the hospital. They spent many holidays in the hospital that year and in the year after my second transplant. They also became very accustomed to New York Presbyterian and the team that was taking care of me. The gift shop became their one-stop-shop for all of their Christmas gifts. For their fourth birthday they skated through the hospital hallways to come see me on their new skateboards. That was their normal.
Throughout my children’s lives, my husband and I have always been open and honest with them about my health. They have come to doctor’s appointments; they know the nurses that come to the house; they know when their mom isn’t feeling well; and most of all, they have seen me at my worst — tracheotomy and all.
Sometimes I would love to shield them from the trials and tribulations that CF wreaks on a family, but I also see how it has brought empathy and compassion to their lives, even at a young age.
Recently, I have been in the hospital for various CF-related issues and those stays have disrupted our daily lives. These hospital stays often mean that I miss things like a lacrosse or baseball game, or a dance performance at school. The dreaded mom guilt creeps in again. In reality, maybe it never goes away. I never like to miss anything, but to miss something because of my CF seems unfair, especially for my children. Sometimes it isn’t even the larger events that mean the most — it is the little day-to-day things that you miss out on — those afterschool talks in the car can mean even more to teenagers and to their mom.
Throughout my kids’ lives, their mental well-being has been a priority. We have always been open to talking about how CF impacts their lives, just as I share what it does to mine. Having a mom with an illness can be a strain on them at times, but we deal with it head-on and always try to stay positive. They know it is OK to talk about the painful memories of their mom not being home, and I know not to take it personally. And when they get anxious about me going to the hospital for a bowel obstruction, it is normal to feel that way. They also know that I am in great hands with my CF care team.
As my children grow up, my hope is that they continue to face the challenges that my CF brings us with resilience. Having cystic fibrosis doesn’t define me as a mom, and it doesn’t define my children’s lives either. Instead, this lifelong disease and its complications bring empathy, compassion, and hope.
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