My son, Sammy, was born with a disease called Cystic Fibrosis. I knew when I first adopted him that I might not be lucky enough to have him for a lifetime. CF is an autoimmune disease that attacks your lungs and digestive system. Not only is it difficult for Sammy to absorb protein in his diet, but his lungs overproduce mucus, causing him to choke, and blocking his ability to breathe. Because of this condition, Sammy is also very susceptible to infections that can lead to deadly side affects.
According to the CDC, the average lifespan for someone with Cystic Fibrosis is around 30 years. (https://www.cdc.gov/scienceambassador/documents/cystic-fibrosis-fact-sheet.pdf) I have to tell you, that as a mother, that statistic means nothing. My child is not a piece of data, he is a person. He is my son. I have seen Sammy almost become one of those statistics, but he is not a quitter. He is a fighter. He is a warrior, fighting tooth and nail to keep the use of his lungs.
Our new normal, since receiving the gift of Sammy into our lives, has become frequent trips to the doctor's office, various breathing treatments, and compression vest sessions. We've even had a few big scares that involved hospital stays. I've also had to monitor his "numbers" (something you learn about really quickly in the CF community) to make sure his bacteria counts stay within a normal range, preventing infection, and that he doesn't lose too much salt in his perspiration, putting him at risk for shock due to mineral imbalance.
We're currently on a waiting list for a promising new medication, Trikafta, (https://www.fda.gov/news-events/press-announcements/fda-approves-new-breakthrough-therapy-cystic-fibrosis) which is a triple combination therapy to treat CF. While I can't offer blanket advice since CF effects every child differently, I will say, any parent of a child with CF should ask their doctor about Trikafta. We have fought hard to get it approved by our insurance, and we are waiting to see if it will improve Sammy's quality of life.
While all this sounds like a lot to deal with and monitor, (and yes, it is!) it is not the main focus of my life as a mother. The main focus is enjoying my son. We go through these procedures and routines to ensure that we have more trips to the park, family dinners, Christmas mornings.
We have found it easy to work with our local school system to communicate some unique needs. For example, Sammy often has to leave class to have a breathing treatment done. Special hygienic precautions, such as wearing masks and gloves, must also take place during cold and flu season, as he is at a high risk of developing pneumonia. We found a great resource in this teacher's guide, and have shared it with the staff at Sam's school: https://www.cff.org/Life-With-CF/Daily-Life/CF-and-School/For-Teachers/A-Teacher-s-Guide-to-CF/
While Sammy has a lot of medical needs, and sometimes has to spend periods of his life isolated from others for his medical protection, he is a normal kid! I wish people would see that when they can't look past the mask he is wearing in a crowd, or when they come over to our home and witness a complicated breathing treatment. He loves video games and playing his drum kit, and teasing his little sister. He has a brightness and intelligence in his eyes that I have never encountered before in a kid his age. What's more, the knowledge that his illness is very precarious has given him an old soul.
My husband and I have also found the following article about the psychological toll of caring for a chronically ill child to be helpful,(https://www.apa.org/monitor/2011/03/ill-children) and it led us to build a strong support system with other families we have met through our medical journey.
We choose to take a no-nonsense, no-panic approach to each medical step we are required to take. We do the next thing, check the next box, and put each task behind us to make room for more icecream, more family hugs, more Sammy in our lives. It is worth every painful inch of the climb. Sammy is my warrior, and I couldn't be prouder to be his mom.
No comments:
Post a Comment