cysticfibrosismom

I'm just a regular mom, figuring out life with my daughter Sophia, who has cystic fibrosis.Take this journey with me.


5 Comments

Alphabet Soup for the CF Soul

Appointments lasting half the day,

Bacterial swabs on the tray.

Compressors drone, nasal spray,

Drugs inhaled two times per day.

 

Exercise, exercise must be done,

Frisbee, soccer, bike, or run.

Gain more weight, eat a tonne,

High calorie shakes sure are fun.

 

Increased treatments when you’re sick,

Just 2 hours more, hear clock tick.

Keflex just might do the trick to

Loosen up that mucous thick.

 

Meds counted out, neat in a line.

Never forget this CF rhyme:

Oh salbutamol, saline, salt, enzyme,

Pulmicort, prednisone, pulmozyme.

 

Quietly watching her fall asleep,

Realizing that my love’s so deep,

Scary thoughts upon me creep,

Tears stream down, I silently weep.

 

Understanding risks and rules,

Vote no for hot tub, yes for pool?

What’s right or wrong when she’s at school?

Xact science needed for this fool!

 

Yet happiness and love prevail,

Zest for life on enormous scale.

Advertisements


1 Comment

Compliance

“A disposition to yield to the will of others.” Expecting this from a child is like asking wine to flow from my taps. Excellent in theory, but improbable. The children I’ve known well, namely my own, have not been known for their disposition to yield to the will of others. To get through our days with any modicum of sanity, as parents we find ourselves becoming master negotiators. From an early age, children resist. Everything. Whether it’s changing a diaper (there’s nothing like a messy poop to inspire your infant to roll over for the first time), or getting through meal times (‘Simon, please eat your carrot’ translates to ‘Simon, squeal loudly, make funny faces, and throw your food at the dog’), kids know how to push our buttons. Sophia actually asks me where my buttons are, and what colour they are. She thinks they must be blue, because that’s my favourite colour.

One tactic that’s worked well with Sophia is offering options. Would you like to wear the pink shirt or the orange one? Happily, she often enjoys this game and our day moves along, slowly but surely. Simon, on the other hand, prefers to use humour to distract me from my request. He learned to smile when he was only 6 weeks old, and shortly thereafter perfected an endearing giggle. Recently, he had a ‘time-out’ at dinner for throwing food. For lack of a better place to put him, I turned him around to face the wall. He did not see this as a punishment. Of course. He wiggled around flapping his arms. Then he craned his neck around and yelled “I’m an angel!!” Immediately all the adults at the table threw their hands over their faces and starting silently laughing so hard that we all had tears streaming down our cheeks. Simon’s refusal to yield to the will of others has me thankful that he isn’t the one with a medical condition where compliance is necessary.

As many parents know, there are instances where Option A is the only option. For Sophia, she has to do her chest therapy twice every day (four times when she has a cold), and take enzyme pills with all her meals. These are non-negotiables in our house. From temper-tantrums to bossy refusals, Sophia’s tried several delay tactics. My secret: I’m not above ‘incentives’. And something I’ve learned: like wild dogs, children sense fear and desperation. The more frantic I seem, the harder she’ll fight back. I’m trying to work on displaying a calm demeanour, presenting rational and even-tempered requests to get therapy started. Sometimes I feel like I’m taming a black bear. At the end of the day, I do whatever works. She needs her therapy. Thankfully it always gets done. I think about what sort of circus act I might have to perform, or perhaps witness, in order to get Simon to do chest therapy. It’s a good thing that kid’s only a carrier!

As much as I get exasperated by my kid’s antics, I have to remind myself that these traits will get them far as adults. What do we look for in our leaders?  Someone who is strong-willed, assertive, decisive. With maturity comes the ability to be compliant without being a pushover. I will remind myself of this the next time Simon tells me a story about his crayon collection after peeing on the floor.