After three years of raising a child with cystic fibrosis, some days I feel like a pro. Others, I feel like I'm back to square one. Guess what? I don't know everything, and that is finally OK.
We have a truly magical partnership with my son's care team. Even at 3 years old, Major is the leader of the team. My husband and I don't consider ourselves to be on equal footing -- medically -- with Major's care team. But, as people who only want the best for Major, we are in lockstep.
I am a Google queen! I love to research and find the answers to all sorts of random trivia. But, when it comes to CF, I don't Google much at all. I leave the transfer of knowledge up to our care team. Rather than research something that could happen in five years, I am just fine waiting until it happens to sort it out. Sometimes this lack of “what if” research causes me to be caught off guard.
Shortly after Major was diagnosed with CF, we found ourselves being seen weekly at his CF care center. His weight was quite low, and with each appointment came increased digestive enzymes. And with each increase, I grew sadder.
I remember a particular call to Major's clinic during which they increased the enzymes, yet again. I completely lost it and cried so hard on the phone. I was so sick of hearing that he needed more medicine.
Our dietitian said something to me that began to change my outlook. She told me that Major's pancreas simply does not work well, and suggested that I not look at his enzymes as medication. Rather, we have to give him something to help. Yes! To this day, I remind myself that we are always giving something to Major to help his body do what it should be able to do.
With partnerships come some tough conversations. I remember when Major was about 6 months old, he had a mild cough that wasn't going away, and he was taking everything that a 6-month-old with CF could and should be taking. His physicians felt it best to begin treating him for reactive airway disease. As soon as I heard the medication name, I sat on the floor and cried. Through my tears I asked about 11 questions; not just questions about the drug. I found myself almost arguing with Major's doctor, in total disbelief that Major could have another condition besides CF. I was just sure that it couldn't be right.
Begrudgingly, I took the prescription and filled it. After a week on the medicine, the symptoms were gone. Amazing! After about a month, I finally stopped stressing about the added drug. I realized that having cystic fibrosis doesn't make Major exempt from other health issues. And that heap on the floor I was in? That's OK, sometimes. Sometimes we need to be down on the floor, and let ourselves cry.
Major's care team spends time evaluating the big picture. They do not give Major medication that he doesn't need, and they take time to thoroughly explain why when he needs something new. And if we aren't comfortable or don't understand -- they explain it again, differently!
In every phone call, appointment, and admission, there is a partnership.
Three years into this, I'm -- dare I say it -- happy when I learn something new about Major's disease. Knowledge is powerful, and I'm grateful for a care team that knows cystic fibrosis inside and out and tells me what I need to know, when I need to know it.
