cysticfibrosismom

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


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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.

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Perspective

Plodding along, making the motions to get through the hours,

End of day coming none too soon. Blissful sleep and then

Repeat.

Seeking help from loved ones, getting a much-needed break.

Proper rest makes the new day brighter.

Enabling me to restart my engine and

Cherish each moment.

Thank-you family for

Inviting my kids to sleep over last night.

Very

Exciting.