I had a moment when we were doing a little extra chest therapy the other day. I moped. Eli is a spry little fellow with lots of energy, even with his cold. He is a ray of sunshine. But my little ray of sunshine is coughing. He has been coughing for 4-5 days. The CF clinic decided to put him on an antibiotic. His cough kept getting deeper, not better. What’s likely is that his CF bacteria have decided to have a party in his lungs. He will be on an antibiotic for the next 20 days. Mark and I re-did our checklist regarding his care. We added the daily antibiotic and a daily extra session on his vest. Then we got wild and color-coded a family calendar while we were at it.
But when a little buddy such as Eli has cystic fibrosis, there’s a chance the virus can cause a flare up of the bacteria that hangs out in his lungs — hence the prescription for antibiotics. May I just say I hate the term “thick, sticky mucus.” I overuse it here, I know, I know. But that’s what’s in his little lungs! And that’s what catches and holds onto bacteria that you or I (assuming you don’t have CF) would just cough on outta there.
Any how, this is probably what happened with Eli. He caught a cold, and then he started coughing. And coughing.
And that little cough makes me sad. It is new. New things are still hard.
Eli’s cough has made buddy extra fussy. Today he was downright mad! He was mad mommy made him go on his machine extra.
That made me sad and at the height of my sadness I talked to my phone, which is perfectly sane. (Nothing to see here, please move along).
CF can feel lonely. You are going through something different than what “everyone else” goes through. “Everyone else.” Perfect lives! @#$%#$% all ya’ll! Oh, oops. I don’t like thoughts of this ilk but they creep out of their caves and starts running around in my head any way, looking for positive thoughts to shred and consume, excreting stinking, bitter piles of negativity, polluting the landscape of my mind. That’s what goes in the old noggin when things get hard, or when something is new with my son’s disease.
Not the same thing, but after my mom died I remembered how lonely I felt in my grief. Like, everyone is just carrying on as nothing just happened when, actually, my world just fell apart. @#$%@#$% all ya’ll!
OK, it is somewhat similar. The @#$%#$-all-ya’ll is also known as being bitter. Bitterness likes to do battle with the light. My son’s smile, his innocence, his warmth, the happiness that he brings me — that is the light. It is strong and it knocks down and it smothers the darkness. My moments of sadness and despair about my son’s disease are actually epic battles between the light and the @#$%#$^-all-ya’ll, the bitterness, that lives in a cave in my head. The light wins because, for now, today, I have chosen for it to win. We choose to live, to be happy.
I still have my moments. Inner turmoil, suffering — these things are inevitable in the wacky and wonderful and tortured human mind. This is a part of being human.
I give myself permission to be human but not to be bogged down in the muck and the mire that comes along with it. When I’m getting lost in an epic mind battle regarding my son’s disease it feels good, it helps, to reach out – to people who understand. To others who have weathered a loss, or are weathering a life that’s kind of like mine — different. It pulls me out of the muck. Shared experience is powerful.
The other day I gave Pam a ring and we caught up. Yes, she knows exactly what I’m going through. It was comforting to talk to her. And fun! Because ours lives are crazy and maybe we are, just a little bit, in a good way. And we discovered we may be living parallel lives a few years apart. She, too, lost her mom to cancer early on. Moved everywhere. Weathered uncertainty, ups and downs. And, CF.
So I had my moment, a series of them, really, since Eli started coughing, but then I made a choice to knock the stinking piles out of my mind. I made a choice to focus on my ray of sunshine, who we will take care of like no one else can. He is my family’s little buddy, and we are better and closer and stronger because he’s here with us.
I wrote that down as if it were easy. It wasn’t. Today, these past few days, were hard.
Now, things feel better, manageable.
I recorded my thoughts as little Eli and I felt during his vest therapy the other day
I hope the antibiotics kick in and kick the CF bacteria party out of his lungs soon, if that’s what’s going on. I’m going to swing by the cf clinic tomorrow for my own peace of mind.
PS: I write about Eli and his lungs in this category. Every post is numbered, if you want to read in order.