“My son has CF.” “Oh. My son has OCD. So, I completely understand.”

Posted: July 31, 2011 in Cystic Fibrosis
Tags: , , , , , , , ,

To be fair. I didn’t know what CF was when my son was first diagnosed. And now, nearly nine years later, it has become such a huge part of our lives that I forget that others have not a clue. They attempt to relate (as the title suggests and no lie, this was said to me this week) but fail miserably. Bless ’em. I have heard some good ones, but currently this is my favorite. I just smiled and hoped that she would investigate CF and find pie on her face. She better. She is my son’s teacher this year. It’s gonna be great!

I try not to be so frustrated with ignorance, but no need to one-up me here. This isn’t a game show where the most troubled wins some home make-over. And, I’m not telling you to make you feel sorry for him (or me). Generally, I do not share it unless there is some situation that warrants you needing that information. I, otherwise, do my best to pretend we are completely “normal.”

Normal. Now there’s a word that plagues us and the CF community as a whole, right? There is no such thing! Although, I have gotten good, really good, at pretending. When asked by other parents during our “tune-ups” at the hospital why I am there, “My son just has CF.” So, I probably just perpetuate the ignorance, I know. I just try so hard to rest on the positive aspects of our path and smooth out the bumps. Eternal optimist, I claim to be.

I digress. For those who are all too familiar with Cystic Fibrosis, you understand my plight. For those who have no idea what CF is and looking for answers and/or direction. Welcome and buckle up!

……

Our doctors did a great job in the beginning; informing and comforting us. Consultations, social workers and literature happily provided to help us understand. They cautioned, however, on what books and information existed on the internet. That not everything was current or factual. The only book they suggested I read (and acknowledge) is Cystic Fibrosis: A Guide for Patient and Family by David M. Orenstein. It still is a great resource and remains on point with all of the medical information that you should need and are able to comprehend. However, I found little out there that truly captured the essence of CF life, as a patient or as a parent. In the years since I have had my son, I have learned that maybe that doesn’t exist because each CF’er has a different path and no two are alike. There is no benchmark, there is no compass.

So, there in lies the problem.

“Cystic Fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus tha…..”

OMG. If I see that explanation another time I’m going to scream! It just doesn’t make any sense and it is so political and uninformative, to me. I explain CF a bit differently, with a little more emotion and a lot less medical jargon…..

“Cystic Fibrosis is a genetic disease, passed down from the mother and the father. It is coded in your DNA and cannot ‘get better’. There is no cure and, statistically speaking, averages a life expectancy of around 37. It affects three major areas of the body: the digestive system, the lungs, and the reproductive system. The stomach doesn’t digest food at all or on its own, a simple cough can become a big deal because the body works against itself to fight it off and for boys, they are generally impotent. My child is still able to learn, play and jump around just like others. His quality of life is quite good, actually. There are a lot of things that I have to think about and watch and even more medicines to administer, but otherwise, he is a wonderfully healthy and happy little boy.” There. Do you feel informed? Did I capture some of the good and some of the bad? I realize it doesn’t put it into perspective, yet, but this is just my opening statement.

About 1 in every 31 Americans are carriers of Cystic Fibrosis. That means that there are over 10 million carriers in the U.S. alone. If you go to a party, there will be at least 1 carrier present. It gets more mind-boggling when you think about procreating with that ONE other person in the room and [possibly] creating CF as a result. The chances are slim, but there. I’ll tell you one thing, it will swiftly make you question every decision you ever made. The personal guilt that goes along with the genetic part of this disease is intense. I procreated (after marrying) that one other person, three times and I got one child with CF, one a carrier like me and one is completely clear. Those are your three paths when all the stars line up for you. A 50% chance to create another carrier, 25% chance for no CF, and a 25% chance for CF. Roll the dice, I did.

CF has not been a death sentence for us and I refuse to ever allow my self to feel that way. We do our best to take it in stride, but when the road tries to change and throws in some curves, I definitely start to waiver on my optimism. To me, that’s the most difficult part of this disease. It is ever-changing and has no respect for how well you have settled into a pattern. There is a cadence to our days; breathing treatments, medicine regimens, eating healthy and staying hydrated. Exhausting some days, but good maintenance is key and our rituals bring some comfort. Even when we are admitted for our “tune-ups”, I find comfort in knowing what to expect. I have never enjoyed a pity party (even if it was for me), but I do hate the unknown. When my son’s “normal” starts to change or he gets the first clear of the throat, I know it’s time to suit up and get ready to battle. I’ll be damned if I let it get the best of me.

So, in all of this, maybe you can find some insight if you are one of the mis- and/or uninformed. If you know all too well, I hope you can empathize and find comfort in hearing another’s journey. I won’t be the one updating every day on lung functions or doctor’s visits, but I do want to share the “meat” of CF. The wide spectrum of ups and downs and how we cope with them. I want to inform and connect without the bore of the mundane and trivial (no promises).

It has been difficult to connect with other CF families and learn more myself about the disease. There are some seriously strict contact precautions between CF’ers and families. I have reached out on Facebook to no avail, FB is all about “me” these days. There is no other mom in clinic as they are so careful to move us swiftly out of the waiting area and no support groups for CF in our area….another harsh reality of CF…..it’s a lonely path, physically and intellectually.

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