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Me and Baby Maelee 10 years ago.
Can I just say my hair has never been
this long since this picture? #goals
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| Her glamorous ring. |
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| Being the annoying song lady. |
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| Accessory courage at its best on CF clinic day. |
I realize we are just getting started helping our children and family as a whole unit live and succeed with chronic disease. We have definitely had more experiences in the hospital and at the doctors than an average family, but know there are other families that absolutely have had more experience than us. Watching each of our infants experience at some point an extended hospitalization left us feeling confused, afraid, lost, guilty, and often very angry. In the beginning I remember a toe to toe nose to nose discussion with one pulmonologist on call one day in the hospital with my 7 month old son (who heart breakingingly screamed bloody murder through every IV). The pulmonologist told me to “get used to this mom, you have to get used to this, you have children with a chronic disease you need to expect weeks in the hospital.” I was furious. I told her I refused to accept the hospital as normal and I refused to quit asking to go home as soon as we could as often as I could. She never came back to our room, and I never saw her again. She asked another pulmonologist to handle us (lets be honest me). I think I would like to let her know now that I apologize and I understand. I’m not happy about it, and it still feel angry about it a lot of the time but I understand that being intermittently hospitalized is part of my children’s life. We also understand that our emotions are second to helping our kids do their best to prevail with positivity and hope. Our attitude will be mirrored and magnified in them especially if it’s a negative one.
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Me and Baby Maelee 10 years ago.
Can I just say my hair has never been
this long since this picture? #goals
|
![]() |
| Her glamorous ring. |
![]() |
| Being the annoying song lady. |
![]() |
| Accessory courage at its best on CF clinic day. |
Charles baby blanket (2009): Lots of fish hand appliqued
covered Charles baby blanket. It matched the theme I enforced for our 2nd
CF Great Strides Walk. We couldn’t afford to have more shirts made for our walk
team so I made fish for us all to pin on our shirts from the year before. They
matched Charles quilt.
Orson’s baby blanket (2011): Orson’s birth hit me like a
fleet of semi trucks so it took a while to get his quilt done. My Mom actually
picked the adorable cowboy fabric and the green satin on the back was the same
fabric I had used to make the wedding neck ties for my brothers wedding. His
quilt didn’t get done until at least 6 months after he was born, but it did
make it to the hospital with him when he was admitted at 7 months for his first
CF exacerbation.
But as we have found with our kids this unfortunate experience
was a necessary evil at this young age when they have terrible allergies
combined with the nasty thick CF snot they can’t clear the beast on their own.
They must throw it up to get it out. Yuck. Sorry to all who had to witness the
upchuck. BUT I promise I had been working so hard to help her with extra vest
time, inhaled mucus thinners, broncodialators, hospital grade suction machines,
etc. But puke happens and this time it happened in front of the entire assembled
elementary school. ![]() |
See don't I look like a nice sweet butt kissing
mother? But don't forget I have a pair of hell
raising pants and I'm not afraid to put them on.
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The whole family after the surgery (baby Ruby in my stomach
yet to be born and hiding behind her older sister in this picture).
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Here is the hard working pulmonologist who helps our
kids survive, while also surviving our kids, and watching
me catch balls of poop. Sounds like a country song.
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We obtained some new CF specific literature for kids today! Cute stuff!
Informative too!
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This is what it looks like to have a 3 hour and 40 minute long
doctors appointment for 4 kids.
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My favorite APP is Jiggity because I feel like puzzles
makes it less like screen time. See how I fooled myself there?
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While I’m running the water for the bath and can hear
nothing else but water filling a bathtub there are gunshots outside. Frank
hears the shots fired and his natural reaction is to walk outside. Picturing
our roles reversed I would have double locked the doors and have been moving
furniture in front of the door for good measure, but chalk it up to male vs.
female emergency response triggers I guess. ANYWAY, so Frank is a walking back
into the house and all of a sudden a barefoot man comes running at him yelling.
Frank moves back quickly and inside the metal security screen door while the
man is yelling at Frank to help him.
My ears are straining to hear what Frank and the definite
voice of a stranger are saying to each other. Are they angry? Are they
struggling? Should I lock the kids in my bedroom and use the landline to call
the cops? Is my portable house phone charged? WHO AM I KIDDING ITS NEVER
CHARGED! WHAT AM I GOING TO DO? WHERE DID I PUT MY CELL PHONE? IS IT DOWNSTAIRS
WITH THE GUY WITH A GUN? Then I have two
seconds of super slow motion thinking and all my questions are answered, not by
Frank but by a quiet calm to my heart and clear understanding. 