When a child enters the world, every parent hopes their child will grow up happy and healthy. This was my hope when my daughter, Sophia, was born seven years ago. Life was as blissful as it could be for two weeks with a newborn. I did what I could for our baby and our two older daughters while my then-husband continued to work. However, that bliss was short-lived when I received a life-changing phone call from our pediatrician.
Sophia’s newborn screening indicated she may have cystic fibrosis, so she was referred to one of the CF care centers closest to us. As a mom, you only want your child to be healthy and happy. After hearing this news, I became so afraid that wouldn’t be the case for Sophia.
I remember years earlier, I watched my younger sister with CF, Jaycie, take her enzymes with ketchup and heard my dad talk about giving her breathing treatments. That was the extent of my knowledge of cystic fibrosis before Sophia’s birth. After that phone call, flashbacks of Jaycie’s funeral quickly came to mind — I was so afraid that would be Sophia’s fate.
In the seven years since our family began our journey with CF, Sophia has done extremely well health-wise. Ultimately, I credit her amazing care team, who have walked this journey alongside us in keeping Sophia healthy. Granted, there have been many twists and turns along the way, but as in true CF fashion, I have learned to expect the unexpected over the years.
At age 2, after noticing a speech delay and visiting numerous doctors and specialists, Sophia was diagnosed with autism as well as sensory processing disorder. Our CF journey with Sophia just became even more challenging. My husband and I had to figure out new ways of getting Sophia to willingly take her medicine or put on her airway clearance vest. To this day, I am still learning this as she continues to grow, and our family continues to evolve.
Today, Sophia is finishing the first grade in just a few short days from writing this blog post. She is a loveable, silly child. She loves Paw Patrol, Bluey, playing soccer with her friends, playing with our cat, Vinnie, and her favorite sensory go-to arm hair. Despite her goofy and loveable personality, Sophia, like many others on the ASD spectrum, thrives on routine. This can be hard sometimes when unexpected hospital stays pop up or when additional breathing treatments are added due to illness. As a mother, I have learned that these changes also impact you and the rest of your family just as much as the affected person.
Having a good partner, or other means of support, to get you through rough times can make all the difference in the world in whether you keep your sanity. In the case of caring for Sophia, I had a great partner in my husband, who would often help wrangle Sophia into her vest, brush her hair, or take on the brunt of hospital duty during those times when hospitalization was necessary.
However, due to circumstances that I cannot explain at this time, my husband is no longer in our home. As I navigate from being happily married to suddenly single, I have realized that this has greatly impacted my CF warrior just as much as the rest of our family. Divorce is something that I never wanted for myself, my husband, or my kids. However, sometimes life can be cruel and take a bite out of you when you least expect it.
It is my hope that someday my family will be able to overcome our current challenges and come back together stronger than ever. Until that day comes, it is important that I, as a caregiver, continue to care for myself in a way that will positively affect those around me.
To those currently facing challenges — CF-related or not — it is important to continue practicing self-care daily. For me, this could be writing poetry or watching a favorite program. Also, having a support system around you is crucial for days when you don’t think you will make it, and you need someone to vent to. Although I have no family left, I have come to rely on a friend of my husband’s, who has been a great support system and has come to be my true family. I also use therapy and Christian counseling as an outlet to talk about things. Finally, I have learned to take things one day at a time. Things can change in an instant, and I have learned that it’s ok to cry and have a moment sometimes when things seem overwhelming.
As Sophia and I continue her journey with CF, I know things will change as she gets older. Soon there will be sleepovers, church camps, and the like where I will have no clue how her needs will be met. I just hope that when she returns to school, there will be people who are receptive to meeting those needs. Until then, as long as I have good support from her care team, and one person in the world who will listen to me vent on my bad days when so many others won’t, then I believe that I will have the strength to keep soldiering on.
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