Category Archives: Cystic Fibrosis

 Virtual Riders

(Quick links for Paul and Carol, if you’re returning and want to access donation sites without reading.)

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Paul and I have been participating in a ride to raise money for cystic fibrosis research for several years now, and because of the generosity of our friends and family, our team of just two riders has been on the leaderboards every year. The ride is usually at the end of September, and I start paying attention to it sometime during the summer and getting ready.

Unfortunately, I was not paying close enough attention (I’m sure you are shocked) and I recently discovered that the wonderful folks at the CF Foundation moved the date of the ride to avoid conflicts with other big rides in the area around the same time. This ride is now at the end of August.

This would not be a problem except … we can’t go that day.

I’m sad about it. I always enjoy the ride, except that one year when it rained the. whole. time. and I had an epic mud stripe up my back, and even that was kind of fun in an awful, this’ll-be-funny-later way. I found a picture. You’re welcome.

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Elias gets to go now (Levi stays home to avoid cross contamination with other CF patients), and he likes it too.

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Paul mostly likes the chicken wings at the end, I think.

So we’ll be missing the experience this year. We’re signed up regardless, though, and any money we raise will still be going toward research dedicated to finding a cure for cystic fibrosis.

If you’d like to contribute to our ghost ride, links are below.

You can support Paul or you can support Carol. We usually have a little friendly competition, but we don’t throw elbows.

And if you think you’d like to join us on a future ride, let me know! I’ll start a list for next year, when I will (I hope) be paying better attention to the dates. We’d love to have you along!

Happy Faces

Why so gleeful?


That there in Levi’s hand is his last IV. The PICC line will come out tomorrow morning and swimming may commence.

I am of course delighted and also I would like to take a mammoth nap. I was talking to Paul this morning, and we agreed that one part we really dislike about IVs is the uncertainty. Are we done today? Don’t know. If we’re done today, will the line come out today? Don’t know. When can I swim, Mom? Don’t know. These are only three questions, but they’ve been repeated to me approximately one zillion times. Will I need to leave work early for another week to make it home to do infusions? Don’t know. Will we have to take a cooler with us for the meds on our outing this weekend? Don’t know.

I don’t know why uncertainty is so draining, but it is. So I am happy for answers.

Done. Tomorrow morning. Yes to swimming.

HOORAY!

Daddy Eggs

For breakfast this fine holiday morning, we had a bit of nostalgia.

As Paul and I lolled in bed at a shocking 7:00 AM (remember, this is a man who rises daily without an alarm at the inhuman hour of 4:45), he said, “Ugh. I don’t feel like making breakfast.” He does, most days. He wasn’t really asking me for anything, just indulging in a little kvetching, but I had some bacon left from a recipe, and some time.

“Hey!” I said, “I’ll make Daddy Eggs.”

Daddy Eggs start with bacon strips cut into small pieces and fried. Going into the skillet, they look like this.

I hate frying bacon. I much prefer baking it and skipping all the popping grease. But I’ll fry it for Daddy Eggs. Even if I think up creative nonswears (Lucifer’s flaming hairline!) while I do.

Once the bacon’s done, you drain it. Then you beat a bunch of eggs with a little milk, start them cooking in the same pan, and sprinkle the bacon on top. That’s it. It’s not really a recipe. It earned a name by virtue of being the only thing my daddy ever cooked.

Daddy Eggs were company food. We had them on Sunday mornings when we’d had out-of-town overnight company. It never occurred to me as a child to question the timing, but with age and experience, I have come to realize that Daddy Eggs were a life preserver.

My mother, whose theoretical enjoyment of hostessing was sometimes compromised by the reality of same, was coming off two nights of extra people in the house and company meals, and facing the Sunday morning flat-out dash to church. My father was trying to make sure she didn’t go under.

He probably didn’t much like doing it, really, but he did. In other words, he was a grownup.

I have to be a grownup this week. Tomorrow morning, Levi and I will go to the hospital so he can have a PICC line placed for IV antibiotics. We’ll likely come home Thursday, and for the next couple of weeks, my phone alarm will yell at me multiple times a day so I don’t miss any infusions.

Levi is a little nervous, but mostly fine. I am cranky and resentful and eating all the cookies. It’s not so much the overnight hospital stay, or the IV routine, though both of those things are a pain in the neck. It’s that I don’t want to have to think about cystic fibrosis, and I can’t avoid it for the next little while. I hate it, worse than I hate frying bacon.

You probably didn’t think this is where this blog post was going. Honestly, neither did I. Sometimes in writing, as in life, we arrive in unexpected places. So often, the only choice we have in the matter is how graciously — or not — we go to our fate.

I am, though I sometimes wish it were not so, a grownup. I will attempt to be gracious, and to make memories of the mundane. We won’t have Daddy Eggs at the hospital, but we’ll have something else. (Chicken fingers and pizza in bed has played well in the past.)

And we will, as before, be fine. Just don’t hide the cookies.

Camp!

This is me, not freaking out.


We just dropped Levi off for overnight camp. He’ll be gone two nights. He has been apart from us overnight before, but it’s always been one night, or he’s stayed with my sister. This matters because if he’s gone one night, we can manage all his treatments around being gone, and if he’s with my sister, well, she knows how to do his treatments nearly as well as Paul and I do. But he’s going to be gone two nights this time, so he’s going to need to do a lot of this himself.

I don’t think I’d be worried at all if it weren’t for his cystic fibrosis stuff. I am sure I’d have a little twinge. I had a little twinge the other day because I hugged Elias and I think he grew like three inches in a week. But Levi doesn’t have social anxiety, and he’s not worried, so I don’t think this would be a big deal.

Everything is going to be fine. I know this. There is a nurse on staff. I explained everything in case Levi needs help. I left an instruction sheet. The nurse has my phone number. (I highlighted it. In two places.) The camp is close by; I could be there in less than 40 minutes. And he’s going to do fine. He’s been doing a lot of it at home himself anyway. Honestly, if everything went pear-shaped and he didn’t get any of his meds or treatments for two entire days … well, he’d have some digestive problems. He’d be pretty uncomfortable. He wouldn’t die.

I am happy he’s going to do this, truly. I talked to him about it earlier in the spring, and the first thing he said was, “OH! Can I take my sleeping bag!” He could not be more excited. There will be a bunch of kids from his Sunday School class there, and he’s pretty pumped about that too. He needs to be able to do this stuff, and not live in a little plastic bubble in our house protected from all germs.

My logical brain knows all this. My logical brain is fine. 

My lizard brain, the one that just reacts and doesn’t want to hear about your stinkin’ logic, just knows that MY BABY IS LEAVING AND I WON’T KNOW IF HE DID HIS VEST AND GET HIM BACK HERE RIGHT NOW.

This is me freaking out just a little.


But here’s the thing. I don’t actually have any control over this anyway. I don’t have any control over the progression of his disease, or any other dire thing that could befall him. Saying this out loud is terrifying, because if we all exercise hard enough and eat enough kale and take the right supplements, we’re going to live forever, right? I mean, we don’t really think that. But we kind of do. We kind of think we’re the exception and the horrible thing will not happen to us.

We are not the exception. Doesn’t that just bite?

So this will be my two-day experiment in letting go. Not of Levi. Not even of control. Just of the illusion of control. 

Levi’s fine. Here he is with his friend Malachi. 


I made them stop so I could take this picture. Levi turned around and ran away as soon as I was done and never looked back. Mom who?

Elias is going to miss his brother. 


But he’ll be fine too. He’s hanging out with Auntie tonight, making chicken nuggets and salad with cranberries for supper. I heard a rumor there was a special dessert. 

Paul and I are going to get Chinese food. All by ourselves. We’re extra fine. 

I’ll report back after I pick him up on Tuesday. I’m sure there will be lots of stories. I’ve half a mind to start the recorder on my phone in the car on the way home and just let him go. I’m not sure my one brain and two ears will be able to keep up with the torrent of chatter, and I don’t want to miss anything. 

Cycle for Life

Well, it’s that time again.

(To donate to CF research without listening to my rambling, click here to support Carol or support Paul!)

By “that time” I mean that Paul and I have registered for our annual Cycle for Life ride to raise money for cystic fibrosis research, but we’ve done absolutely nothing else. We’ve raised zero dollars between us, and we’ve made the ride organizers sufficiently nervous that they’ve sent us a lovely, gentle reminder e-mail. Also an annual occurrence. (I’m sorry, guys. We love this cause, but we are both terrible procrastinators.)

We did actually get on our bikes, which is something.

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Nobody is going for hero status this year, and we’re both riding the 10-mile course, so I don’t expect to end up whining to you while balancing frozen vegetables on my thighs.

Paul would be delighted to out-fundraise me this year, which he has *coughcough* never done. If you think that would be fun, donate to his ride.

If you’re more into the status quo and the correct balance of the universe, feel free to donate to my ride.

In all seriousness, if you are in a position to donate toward cystic fibrosis research, we’d be ever so grateful for your contribution. Changes in quality of life and life expectancy for kids with CF have changed exponentially over the past few decades, but it’s still a terminal, progressive disease. And it still requires a lot of management. We think a cure is in sight, and you can help.

If you’re feeling especially fiesty, join our team (Riding for Levi) and ride with us on Saturday, September 10. There are chicken wings at the finish line!

And if all you’re in a position to send is your everlasting good wishes, we’ll take those, too, with grateful hearts.

All our love and thanks in advance.

Seven Chapters In

I’ve been trying to read a book, and I’m having a lot of trouble getting through it. I’m seven chapters in after an entire month.

The problem is not time. Maybe a little, but I’m finding time to read again these days. The problem isn’t the writing. It’s well done, and I am in fact attempting to learn from that as I go along. I actually got to have dinner with the author and hear her speak, and she is a delight. I really want to like this book. I do like this book. I just don’t know if I can finish it.

It’s a memoir of the author’s first marriage, to a young man with cystic fibrosis. You can guess the ending, right?

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I brought this home with me the night I met Liz and I kept intending to start it. That was months ago. Many, many months.

I’m in it now, you guys, and it is hammering me.

We have been living for a little while in a pleasant little vale, where cystic fibrosis does not matter much in our day-to-day lives. Sure, we fit in 75 minutes of treatments every day and Levi takes enough pills at breakfast to choke a baby elephant, but that’s just what we do. We’re used to it and it feels normal and on we go, whistling as we work.

This book just terrifies me.

I am terrified of the time that is going to come when Levi leaves my house and I can no longer know for sure that he is doing every possible thing to take care of himself.

I am terrified that he is going to fall in love with someone who can’t handle a diagnosis like this and his heart will be broken. I am terrified that he will fall in love with someone who can handle a diagnosis like this and he won’t need me anymore, and then what will I do? If there’s a future me that doesn’t constantly worry about Levi’s lung function and the future and whether he’s had his enzymes, I’m not sure I’ll recognize myself when I meet me. Someday he’s going to check in to the hospital and it not only won’t be my responsibility to stay with him, it won’t be my right.

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Levi in 2012, during a visit to the CF center.

Most of all, I am terrified that the cure is not coming fast enough or cheaply enough or in just the right way for his gene mutation. That all the walking and cycling and fundraising will not have been enough. And this vibrant little voice will be silenced way too soon.

 

I just can’t stand it.

So I do not know if I can finish this book. I already know the ending, but I don’t know if I can handle the journey. I can’t decide whether this means that I know my limits or I am a sniveling coward, and I don’t want to think about the answer very hard, which is probably answer enough.

Orson Welles said a happy ending depends on where you stop the story. I think, for now, it will have to be enough that our story hasn’t ended. There is still happy in front of us.

And I can decide about chapter eight tomorrow.

 

You talkin’ to ME?

The boys and I went to a benefit dinner last night. Paul stayed home. I told the boys he wasn’t going with us, and Elias said, “Papa’s in trooooooouble!” (Because why else would you be forced to stay home from an outing?) He seemed pretty happy about that, for some reason. I was just happy not to be mowing the lawn, which is what Paul stayed home to do since it rained all week and we were afraid the lawn might actually start to take over.

What was I saying?

Oh, right. We went to a benefit dinner for a local school that specializes in conductive learning, which I frankly don’t know much about, except that it is designed to help kids with serious motor challenges and it appears to be doing amazing things for the kids that attend – a friend of mine has a son there. Also that keeping a school like this funded is as easy as pushing a boulder up a hill while trying to keep your toddlers out from underfoot. Hence the benefit dinner.

Levi in silhouette, watching the auction for the goldfish that were to race later and being resentful because I didn’t bring enough cash to win a bid for one of them. Oops.

So when the most excellent World War II veteran sitting next to me at the picnic table started talking about being a Mason and all of the medical services they provide for children, I didn’t think very much about it, because that kind of thing was sort of in the front of everyone’s mind. He mentioned there is a hospital in Erie, Pennsylvania. “Oh yes!” I said. “I think another of my friends has taken her son there several times. It’s wonderful.”

He was terribly glad to hear that, since sometimes people are too proud to ask for help, he’s heard. “Well,” I said, “it’s true that it can be really hard to accept help. Even if you need it. But everybody needs a little help from time to time, I think.” He seemed delighted with me.

He kept bringing it up, in between stories about his late wife (they were married for 67 years) and places he’d lived, and he told me that anyone needing help for their children could ask anyone they knew was a Mason, and finally, he turned to me with all the kindness in the world in his eyes, and said, “And you know, I think God chooses special women for these special children**.”

And finally, FINALLY, the penny dropped.

When we sat down, he’d seen me pull little containers out of my pockets and put a whole whack of pills down in front of Levi. Who then swallowed them six at a time, clearly having had a lot of practice.

He was talking about us.

I was so surprised I almost laughed out loud. I’m not in denial that Levi has a medical condition (believe me, I know), but mostly, when he’s not coughing like it’s his job and there’s no special stuff going on, I just don’t think about it very much. I don’t think about the pills; the pills just are. And because I have the loudest mouth in my little corner of the internet, pretty much everyone I know already knows what the pills are about too.

Every once in a while I’m thumped over the head by things I know to be true but had forgotten, or just not thought of much lately.

  1. We really have no idea how we appear to others. It’s not something we should spend too much of our time thinking about, because constant image management is a black vortex of failure and despair, but sometimes we get snapshots of how we look from the outside. And isn’t that educational.
  2. Human beings can get used to almost anything. And on the list of Things That Must Be Endured, I think what we’ve got going on is pretty manageable.

And can we talk about the 91-year old man who did his very best to get through to the mom of the little boy he’d just met, who might need some help? Even though she was terminally oblivious?

Isn’t he great? Lots of people are just great. It’s easy to forget that, too.

 

 

** We can argue this philosophy some other time, but I’m not so sure that’s true. (Even know I know he meant it kindly.)