Out of Nowhere
I think you would probably agree with me when I say that being a caregiver to someone with CF is really just going through the motions. There is not much time to stop and dwell on what is going on. If your child has a good CF clinic appointment, then you push things aside even more.
Keep doing what you are doing, and we will see you in 3 months.
To me, I find myself almost forgetting about the damage that CF can do. The day-in-day-out routine of enzymes, medications, and treatments almost puts you in a spell of monotonousness and you wake up to do it all over again. Sometimes, out of nowhere, is when I feel that dark place in my mind that having a child with CF can take you to.
A cough can take me from having a great day to worrying my head off. What if he coughs again? Should I call his care team? Is an ER visit warranted? Why have not bought a pulse oximeter yet? My thoughts go straight to what is wrong and will he have to be admitted. 0-100 mph in a matter of seconds.
Then it hits me: What if this is the moment that leads to a crisis? What if this is when things change? My son has cystic fibrosis. What if I lose him?
Fear and guilt
Imagining life without my son is not new to my husband and me. We have thought about it when things have seemed dire. There is a punch to the gut that comes from hearing about yet another young life cut short by CF. You remember you are going through this too and you feel guilty for still having your child with you. Then you wonder if your child’s turn is coming soon.
Year after year we celebrate his birthday and make no cutbacks. It is a time to be incredibly grateful for. He is here with us for another year. 365 more days in his home, safe and healthy. I cannot express the magnitude of gratitude that every birthday brings us.
It is the quiet times, the times when my mind wanders too far that I am reminded of what could happen and what could be on the horizon. The “what ifs” wrap me up and take me to the place that I try desperately to push away. What if I lost him? What if I must bury my son? How would I live this life without him in it? What if he leaves us?
It’s easy to say “Just don’t think about those things,” but those things are the things that motivate me to advocate and to speak on his behalf. They are what push me to do what I have the power to do so that I can keep him with us as long as possible. I will never stop talking about CF and my son.
By speaking and talking every chance I have, I am raising awareness. Raising awareness means money and that means research towards a cure. This is what I can do to have him here as long as I can. Those thoughts might come and go, but I try to not stay there. I look at him and I immediately try to shake it off. I have to tell myself that he will be ok. The trajectory of CF patients is so wonderful and he will be right there, thriving and continuing to do great.
Do you experience worry, fear, or guilt as a parent of a child with cystic fibrosis? Share your thoughts in the comments below.
Have you (or a loved one) been experiencing any negative side effects from Trikafta?