My mom is really the unsung hero when it comes to the invaluable support I have gotten from my family throughout my fight with cystic fibrosis. Whereas my dad gets a ton of the credit (rightfully so) in the public eye for bringing a ton of awareness to the disease, my mom has been, and still is the backbone for the hands-on fight at home.
When I was younger, she essentially did all the dirty work. Everyday she would clean all the necessary equipment for my treatments, order new medications from the pharmacy and prepare them for use. It may not seem like a lot, but the sterilization process is no joke. As a kid in grade school, I probably would have managed to burn the house down while trying to complete step one of the whole ordeal, boiling the water. I’ve since gotten past that speed bump, thanks largely to my mom, but the task has certainly gotten heavier.
Since new nebulized medications have been introduced to patients, it means a few things have happened. First, we saw improved lung function and quality of life, but second we saw more time spent doing the actual treatments, which, also meant more equipment to sterilize. What was once a 5 to 10 minute process, it had become a 15 to 20 minute process, once or twice per day by the time I was 14 years old.
For many CF patients, including myself, sterilization is probably the single most challenging part of dealing with the day-to-day maintenance of the disease. Think about it, no one likes doing the dishes after dinner, just ask any of my college roommates. The sterilization process is just another added chore.
By the time I was well into high school, my mom really drilled into me how to sterilize my “nebs” as we call them. She was preparing me to be more independent, and then ultimately the task of taking care of myself during college and beyond. If you were to ask her today if I do a good job in that department, she would probably tell you that I still don’t do it right, but we can agree to disagree there.
As I got older, though, there came other lessons. She taught me how to use a syringe properly, and safely for that matter. I cannot tell you how many times I have accidentally stuck myself while trying to reconstitute medicines – it really hurts too. She taught me how to deal with pharmacies and insurance companies whenever there seems to be an issue, and there will almost always be an issue when it comes to that stuff. She also taught me how to take care of an IV or PICC line properly with the help of homecare nurses. Whenever I was home on IV’s when I was younger, and still today as a matter of fact, my mom would always volunteer to do the early morning IV shift.
IV meds, depending on the drug, generally have to be administered every 6 or 8 hours, so when I am not in the hospital with an overnight nurse to do the job, someone has to start and finish the IV med at 4 or 5AM every morning for two weeks, and since IV meds are required when my health is sort of in shambles, waking up in the middle of the night is not the easiest thing in the world. Although, I will tell anyone that I have no problem getting myself up at the crack of dawn to get my meds done, my mom almost always has had different plans for me, and those plans have always involved her getting up and doing them. Instead of the tooth fairy, I was getting visits from my mom in the middle of the night to run a toxic antibiotic designed to kill the deadly bacteria in my lungs. Nice analogy, right?
Mom still holds my hand when I have to get a shot, my blood drawn or an IV inserted because let me tell you, I am still terrified. I can act all big and tough around just about anything except the little 2-inch butterfly needle the doctor uses to draw blood.
During my time in college, whenever my mom would come up to visit me, her routine was the exact same every time. Without fail, should would start boiling water to clean my nebs for that particular day, then she would make my bed, which in all honesty probably hadn’t been made for weeks (I’m just using averages here), then after that she would use the boiled water and complete the neb sterilization. Every single time she came for a visit, for all four years of college, that was the routine, crazy.
Beyond teaching me how to deal with all of the manual maintenance and labor involved with the disease, the most important thing my mom has taught me up until this point is probably that no matter how bad things get, they will always get better. She never gets angry with me when I get sick, but rather she likes to know if I think I am sick, because to her that is the most important part of caring for the disease. If I am able to be honest with myself and know when an infection is brewing, or if it is time to see the doctor, or if maybe I should take it easy for a few days, then that is how I am able to get on top of the disease. Unfortunately, there is a very fine line between acting tough like nothing can stop me, and getting very, very sick. There have been times when there was literally nothing I could do to stop the impending hospital stay or serious infection, these things just happen with CF, and my parents understand that, they just want to jump on it when moments like that do happen. I do give a lot of credit to my mom, though, for teaching me how to be honest with myself. At a very young age, I had to learn how to really understand my body. I wasn’t able to have the feeling of immortality that most little kids have, which isn’t a bad thing, I just had to mature faster. My mom showed me the door to maturity, and I had to walk through it.
Mom will always be an inspiration to me, even though we definitely do butt heads at times, like when it comes to my sterilization skills or my reckless abandon as a 13-year-old hockey player trying to hit the much bigger kids, but she will always smile and agree with me – after all, I am her baby boy.
No one prepared her for parenting a son with cystic fibrosis, but she has definitely mastered it. Honestly, it really doesn’t even seem that difficult to either of us when we are battling the disease, it just seems like another day in our lives.
She makes my fight to stay alive a little easier every single day.
