November 15, 2008

Samantha and Meds

I've really been trying to give Samantha and Timothy words to use to describe all the treatments and medicine for her Cystic Fibrosis. As they start to explain it in their own words, we've had some conversations that are a little poignant to me...

Samantha was kind of complaining about taking enzymes a couple of days ago, and Timothy said, "That will make your sickness go away." Oh, if that were only true! But of course we pray that one day CF will stand for Cure Found.

Samantha was complaining about treatments when she woke up this morning (see a trend?) I told her, "We have to do it so that you can breathe better". In a very resigned voice, almost to herself, she said, "It makes the cough go away."


Anonymous said...

Sending prayers to your family, that their could be some words of understanding for their little minds.
With faith and prayers CF will stand for CURE FOUND!
Tell her baby Phoenix says "Hello" and that sometimes he doesn't like his medicine either but they help make his cough go away to!
Lots of prayers!

Stephanie's Mommy Brain said...

O man, that tugs at my heart! Do you think you'll have issues with her "rebelling" at taking medicine/treatments as she grows older (really thinking of teen years)? Just one more thing I hadn't considered when thinking of your "normal" life.

Alicia said...

Stephanie asked a great question, and I'm posting my response in case some more experienced CF families have some input.

From what I hear they all go through rebellion with meds. I think it's just part of their own acceptance process. I already heard one good story at our CF Family Day from an adult CFer who rebelled when she was younger. She remembers being 12 or so and telling her mom she wasn't going to take her enzymes. Her mom, knowing what would happen, didn't argue at all. Within a day or so the girl was in serious abdominal pain because in no time they get violent gas and have horrible bowel movements. It's extremely motivating to take the enzymes! And I'm sure once they realize that popping a few pills before each meal is a small price to pay for intestinal comfort, they'll want to do it!

The breathing treatments are probably trickier. The results of not doing them are more damaging than not taking the enzymes, but I don't know that the initial downsides are as obvious. For a pretty healthy teen CF-er, it could probably take longer to be in pain. I would love any CF-ers or moms to comment on that since I don't know. But for sure there would come a point when breathing would be painful enough that they will get in line.

Sydney said...

Hi Alicia, another CF mom here. I think my kids must be similar ages to yours but my daughter is the older one (almost 5.5) and she is the one with CF. My son wocf is 2.5. Anyway, love your blog and am going to put it in my favorites.

careysue said...

Rickie complains sometimes about treatments ...we've like you..just act as though this is normal for you, and that's all there is to do your treatments and you go on! Never really letting him think-poor me. (not suggesting you do this at all)One thing about emails and comments sometimes people don't understand the flavor of the comment! ;)

I've heard other CF moms with older boys tell me that boys are less compliant than girls, when they're teenagers. We'll have to cross that bridge when we get there!

Take care!

Anonymous said...

Alicia says it well, a method called 'natural consequences'. I also think careysue's suggestion of 'this is our life' - perhaps different from others, but the way it is - a very effective precedent to rely-on.

When our children were very young we would have discussions of what happened during movies, and my husband coined the term 'movie magic' - telling them that there were technical techniques not visible on the screen. For children younger than 7-years, less than literal science may be okay - 'medical magic'?


Carolyn said...

Your children are so cute!!

Dan Smith said...

This is so funny! I had wanted to respond to Careysue's comment by something I had read from Carolyn! And for some reason when I was looking for it I couldn't find it, but because you commented I looked again! I love this part of Carolyn's "about me": We treat cf the same way we do taking a shower or brushing our teeth. You have to take a shower but you don't talk about it all day or think about it all day. You just do it. And that is the way we treat cf, we do what we need to do but thats all the attention cf gets! Then we spend the rest of the day doing things we love and have fun with! Now I know cf is more serious than brushing your teeth, ect but this is the best way I can explain it. CF is a part of our lives but we don't let it overtake our lives.

Cara said...

So I was at my pulmonologist's office the other day and I SWEAR I saw Samantha. I know we live in different states so this isn't exactly possible, but she has a cute litte CF twin out here in VA! :)