Today I learned something new, and a little surprised I did not know this story or Doris. I believe reminiscent and/or reverent about many moms out there –

Please watch:

“How unacceptable. We have to go to work.” I love how she nods and shakes her head subtly and yet almost to say, “This is nonsense.”

I have also heard of a couple older CF patients living into their 60s, probably Doris’s daughter and perhaps a couple other CFers, almost like folklore. Hard to imagine and hard to wrap my head around this very true possibility.

Jumping off – I also learned through the great Claire Wineland foundation, Claire’s Place Foundation about this. I am just going to quote from their page:

We are HONORED  to be one of 4 organizations to receive the @cf_foundation’s 2020 Impact Grant for our brand new #WorkProudly Program inspired by our Founder Claire Wineland.

In 2018, only 39% of adults with CF had a college degree, and just 52% were employed due to the rigorous demands of living with this illness. The goal of the new Work Proudly Program is to help individuals with CF and CF caregivers with job training and equipment to gain the skills necessary to be competitive in the job market and acquire flexible ‘work from home or hospital employment.’

This first year, we are running our pilot program and are seeking 15 participants who are interesting in giving this new idea a try! THANK YOU #CFFoundation for keeping Claire’s legacy alive and supporting our community!

Head to bit.ly/workproudly for more information or to have a hospital professional submit a referral on your behalf!

Claire set down and cleared a path for so many of us. Her spirit, always loved.

Sigh.

A funny story that my friend Scott posted:

“So I’m listening/watching loud #music videos as usual and I noticed my treatment was done so I go to turn off my machine and well . . . it was already off. I had already finished my treatment and turned it off already and I was just sitting there breathing in just air like I was doing my treatment still.”

I have so done this. I have hit all the buttons and then I take the nebulizer out of my mouth and look into the nebulizer, “When will this be done? Oh, it is done.”

Especially this one little machine that shuts off by itself; lights out. I am sitting there with plastic in my mouth with no med; thinking, dreaming, onto the next thing probably, but just sitting.

I said replied and said, “It is almost like when I gasp, (literally gasp as if someone just scared me), and said, “Omg I need to do a treatment.”

Then remembering a few seconds later, “Oh wait, I just did one an hour ago, or was it two?” This is usually a more weekend, vacation situation versus a working week mishap. I have done this enough, it is slightly concerning.

And just a closing thought: CF awareness month is May, and at times I have wondered if there is a link between Mother’s day and CF awareness month. Because this community has the raise-the-roof, mama-bear, no-holds-bar presence. The CF moms, and dads, but moms, are out there fighting for their kids as if their life depended upon it. And to be honest, right, it does.

“How unacceptable,” allows for the earth to be broken-up, and walls shattered.

Much love, many blessings.  Please take care of you and you and you –