cysticfibrosismom

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

Alphabet Soup for the CF Soul

5 Comments

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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5 thoughts on “Alphabet Soup for the CF Soul

  1. I love this! I am a mom with CF to a one year old (no CF) and even though this was written from a different perspective I relate to it so much! Especially:

    Quietly watching her fall asleep,
    Realizing that my love’s so deep,
    Scary thoughts upon me creep,
    Tears stream down, I silently weep.

    I feel this all the time, scary thoughts of a motherless child, of leaving her too soon, of breaking her heart. Such a horrible disease for everyone involved 😦

  2. Fittingly come to mind the words from ‘The Second Letter to Sophia’:

    Not for one year only she is the best Mom which I will ever know
    But every moment since on the world’s stage I set my feet.
    During the day she is like that sun which maintains all that lives,
    And in the night she is like the moon that in tranquility and peace
    Let us all comfortably in our cozy beds rest and sleep.

  3. A Day In The Life 4 cysticfibrosismom – just fabulous! Hope Sophia is doing well – you and the rest of your family, too. Savor the longest day of the year!

  4. Yep, I get it. And there are so many more ingredients to add, hoping all the while that too many won’t overwhelm the others and spoil the outcome.

  5. Hi, I very much enjoyed alphabet soup for the CF soul. It mad me think of a friend from long ago in a happy sad sort of way. I love your style.

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