The Cost of Cystic Fibrosis

Upon receiving Finn's diagnosis nearly 3 and half years ago we quickly learned that Cystic Fibrosis is an expensive disease.  But it was hard to understand what that would really mean at that early time.  Honestly, I thought, "Reid has a good job.  We have good health insurance.  I'm good at budgeting.  It may get tough, but we'll make it work."  And that is all true.  But that doesn't change the fact that as time goes by and Finn's bills continue to grow and his disease continues to progress, the reality of the expense becomes more apparent and there are periods of time when it feels overwhelming.  And I wish I was just talking about monetary expense.

For simplicity's sake, we'll start with the monetary expense.  I know this is a delicate situation as I am very aware that we have been greatly blessed financially.  This journey has introduced me to many who have not been as blessed as we have and so I hesitate to even talk about this aspect, but the reality is there--no matter how much money you may have, CF is costly.  My heart has broken as I have heard from families that have had to make decisions to not have the mother eat for a day or two just so they can afford a new prescription or get their kids enough food.  There are families who simply can't afford the treatment options that their children need, or the health insurance, or even just the high-calorie diets that these children require.  So, with that being said, please realize that I am not putting this out there to complain or elicit sympathy.  It's just a statement of our reality.

Remember last year when I totaled up Finn's bills in the spring??  Well, by the end of the year it thankfully wasn't all that much higher, but it was higher.  After you take out the portion that our insurance covers, I have found that about 7% of our income goes to Finn's health care needs.  That is an estimate as of right now.  Of course, there is no question that we will cover those costs and not think twice about it.  I happened to think about it once and I realized how much more we would be able to do if we had that money back, and then I needed to stop.  The reality is that our budget is tighter and will always be tighter because we have to take care of Finn's health.  And the other reality is that the health expenses will not get any cheaper.  They will only continually get more and more expensive as time goes on.

But other than financial expenses, there are other "expenses" of CF on our family.  The "expense" on Kai is the one that I worry about the most.  Kai has always been a bright child and that is not changing.  I have found that when it comes to Finn and CF, he is less inclined to ask questions and instead listens and internalizes.  Occasionally, I will be surprised to find out just how much he has internalized by a random question or comment.  The first occasion of this occurred sometime last summer--maybe July?  It came out of nowhere and surprised me, but he started asking about why Finn had to go to the hospital back in April.  I was very much taken aback that here we were 3 months later and he was still not sure and wondering about it.  Recently the comments and questions have been coming just a bit more frequently.  I have been doing my best to be prepared to answer his questions, but it's hard when I'm not too sure what they will be.  For example, about a month ago at lunch Kai looked at me and asked, "What if the baby has Cystic Fibrosis?"  I calmly replied, "Well, then I'll just make sure that she gets zyme-zymes (what I call Finn's enzymes) just like Finn."  Since we were eating at that moment and that's what I was actually doing, that's what I thought his concern was.  He thought for just a second and then said, "Can she have her own vest?  And can it be pink?"  What a thoughtful big brother he is, and of course I told him that yes, she would get her own vest and it most certainly could be pink.  He is excited to have a sister and I can't imagine him being anything but a fantastic big brother to her.

One final example of Kai's developing understanding of CF happened just this morning.  Finn was busy playing and when I called him to the couch for treatments he stomped his foot and said, "I'm never doing treatments ever again!" and ran off.  (In his 3 year-old voice it's more like "tweetments" :P)  As Finn was running off, I turned to Kai and with curiosity in my voice I asked him what he thought would happen if Finn really did not ever do treatments again.  Kai responded with, "He'd get very sick.  And then he'd have to go to the doctor.  And he'd never get to watch TV again."  I smiled at the last one and told him that he was right.  At this point, Finn had worked his way to the couch and decided that it was best to comply.  When he sat down I asked him if he had heard what his brother had said.  He nodded his head "yes".

As Kai's understanding of CF grows, I worry about him.  I worry about how he is processing it all and how it is going to impact him.  I worry that I don't give him enough time or attention as I'm constantly making sure that Finn is taken care of.  I worry that my relationship with Kai has changed drastically because of this "elephant in the room".  And I worry that some of his issues get overlooked because I am so focused on Finn's issues.  I've set goals to change that, but I have a feeling that will always be a work in progress.  It's something that I don't ever want to stop working on, though.

There are many other emotional "expenses" of Cystic Fibrosis.  I could talk about the toll it takes on me and Reid, on our relationship at times, and even on this pregnancy.  But I'm sure that will come in time, in other posts, and as the years go on.  The one last "expense" that I wanted to share, and I most certainly didn't count on, is the expense to my friendships.  I was really surprised in the first few months after Finn's diagnosis how just a small handful of friends didn't say anything.  One even just stopped talking to me.  My thought is that most people just don't know what to say--and I understand that.  But for those who were wondering, you don't have to say much.  For me all I need is an offer to help, a listening ear, or even just a quick, "Thinking of you" comment.  You don't need to be profound or have deep insights, wisdom, or advice.  Mostly I just need friends who, though they can't relate to our daily life, can listen and respect the difficulties that it presents.  I don't think it's too hard, but then I'll admit, just as you have never been in my shoes, I haven't been in yours.  I've also found that if you don't know what to say, say that--it's better than nothing!  And if you don't understand what I've said or explained, I appreciate that honesty as well.  Pretending to understand when you really don't I have also found to be hurtful.  I don't know why.....

Anyway, that's enough of the deep thoughts for the day.  I've been wanting to put these thoughts down for a while, so I'm glad that Finn is napping and letting me do that.  And I'll admit it feels good, and even inspired me to do something.  I just made a call to the pediatrician for Kai.  His GI issues seem to be becoming more frequent and it's time we gave him a bit of attention.  He's such a good kid, he deserves it.  We'll see what comes of it!