It's Ok to Forget
Our Monday was just like any other day. My husband and I woke up and ate breakfast. I had some work to do so I sat in our office, half distracted by the news and drinking coffee. Our daughter had stayed up late watching whatever she found on the Disney Channel the night before. The door to our sons room was still closed, so I knew that he was still asleep. Nothing out of the ordinary was going on. It was a fairly unexciting morning.
After an hour had passed, I went to check on our son and to tell him that it was time to take his Trikafta. And just as I thought, he was still asleep. I noticed the Pepto on his nightstand so I shook him awake. "Hey, do you feel ok?" "Not really. My stomach really hurts."
A stomachache isn't just a stomachache
As a CF caregiver, you are programmed to jump into action. No thinking. No questions. You just do. It was at this moment that I remembered (and I use that term loosely) that he isn't our daughter and a stomachache is never just a stomachache with CF.
I got him up and questioned him about everything under the sun. What did he eat last? When was his last bowel movement? Was it normal? When did his stomach start hurting? And just like a normal 12 year old, he was aggravated with my questions, but he answered them.
CF is part of our everyday lives now
It occurred to me that the day to day life of him having CF is such a daily thing that we don't think about it as much as we used to. Wake up. Medications. Treatments. Do it again. Go to bed. Even with all of that, I don't think about it as much anymore. It's only when we are going to his 3 month CF checkup, or he starts coughing, or his stomach hurts that we remember.
CF has been a part of our lives for almost 13 years. We have found ourselves in a place of mundane routine and I cannot be more appreciative of that. Only when something is thrown at us out of left field or he has to see that doctor that we stop and think about it.
I asked my husband if he "forgets" about Jax having CF and he said yeah. That he doesn't think about it as much because the days have become so routine and Jax is relatively healthy right now. You go through the motions, take care of all of the things that need to be done, and you keep going. Sometimes there isn't much time to remember. Sometimes remembering can slow you down.
Do I need to think about CF constantly? No
At first I felt bad for "forgetting". But I realized that I am not actually forgetting. I am dealing with it and that is how I my mind is doing just that. Years ago when Jax was in and out of the hospital and wasn't as healthy as he is now, all we did was remember. All we did was worry and have severe feelings of dread. We would have done anything to be able to put it aside and be able to function without having CF hanging over us.
Us not thinking about it daily isn't a bad thing. We are just in a place with his disease where he does not need as much care as he once did. Right now, his medicine and treatments are what I would call maintenance and I am very thankful for that.
It's ok to forget. It means that things are better. Your mind has settled some. Right now Jax is healthy and well. When he needs us to spring into action, we will be there. In the meantime, we are ok with the unexciting days of treatments and medication. It means that things are just fine.
Have you (or a loved one) been experiencing any negative side effects from Trikafta?