by Sarah | Feb 26, 2013 | All About Molly, Tuesday Twenty
I started with 20 for me last week…I thought Tuesdays would turn into a good day of the week to continue them. Considering I’ve spent the past few days (& will continue for another few days) to obsess over Kennedy and her tests…I’d take a moment and a day to focus on Molly.
So without further ado…20 things about Molly.
- She is obsessed with her unicorn, Sparkle. The unicorn is placed under my ‘protection’ every day when she leaves for school.
- While she is undeniably brilliant, and we’ve known for years, she does not test well.
- When she was 11 months old she had a unique talent. You could lay out 10 puzzles in front of her, hand her one piece and she’d place it in under 15 seconds.
- Instead of loud freakouts – her meltdowns are silent and internal.
- She dreams of being a model.
- She hates red meat.
- And pork.
- And chicken.
- In case you couldn’t tell, she’s a super-picky eater, practically vegetarian.
- She likes to believe she’s capable of great manipulation – unfortunately for her, it’s not true.
- She likes to be in control of every situation.
- Which also means she hates things like being held upside down in play.
- And also that she is very bossy.
- For four years we wondered if we would ever know her. From the time we lost her (a week of intense GERD pain made her retreat into herself), until the age of four/five, we wondered if we would ever get to know her.
- Once her personality came out, it came out in spades.
- As long as you don’t ask her direct questions, she is sweet and talkative.
- If left to her own devices she could read for hours on end.
- Her favorite books are the “Bad Kitty” books.
- Her favorite movie is Madagascar 3 (sooooo many times we’ve watched it).
- She’s a Momma’s girl….which is a switch from when she was a baby…I imagine it’ll switch again before long.
More Twenty lists next Tuesday.
by Sarah | Feb 25, 2013 | All About Kennedy, Cystic Fibrosis, Failure to Thrive (FTT), Special Needs
Today my youngest one is (as this posts) undergoing tests that will determine further treatment. In honor of that and the indomitable spirit I know she has, I’m re-posting this post from a couple of years ago.
[flickr id=”5883282550″ thumbnail=”small” overlay=”true” size=”small” group=”” align=”left”] Neither love nor fire can subsist without perpetual motion; both cease to live so soon as they cease to hope, or to fear. ~François de la Rochefoucauld
She is never still.
My Angel.
Always in motion, even at rest.
Curious about everything.
Has to touch it, feel it, question it, learn it.
The world is but a canvas to our imaginations. ~Henry David Thoreau
She sees the world with bright eyes.
Hears music no one else hears.
Sings songs of her own workings.
Finds fun and life in nothing more than a rock.
A tomboy, and a princess, all wrapped into one.
Child of the pure, unclouded brow And dreaming eyes of wonder! Though time be fleet and I and thou Are half a life asunder, Thy loving smile will surely hail The love-gift of a fairy tale. ~Lewis Carroll
She loves with all her heart.
And can melt yours with a smile.
Or one look of her big brown eyes.
A Daddy’s Girl.
My precious Angel.
A sample of the purest love. Unconditional love.
Our Angel.
by Sarah | Feb 21, 2013 | All About Me, All of Us, Crap, Random, Story of Me
Five years ago (5? Really? Wow….) I did a post called 100+ things about me.
I thought about completely reviving it and doing a full 100+ things about me again as quite a few of those are now old news or untrue (or have changed drastically).
But 100+ things felt like a lot to my addled brain, so I trimmed it down to 20 (for now – see after the list for my ideas).
So, without further ado…20(ish) things about me…that you may or may not know.
- I grew up in Buffalo, NY.
- A piece of my heart still calls Buffalo home…but then I realize I’ve spent more years away from NY than I did in it.
- I call myself the “Reluctant Hoosier” – because I’m slowly, and begrudgingly, realizing that to me now, Indiana is becoming home. I still hate the name ‘Hoosier’…but I am loving the state more every day.
- I am deathly allergic to cats (had one put me in the hospital 11 years ago)
- And pot (yup – going to concerts like Metallica is FUN for me).
- Growing up I ate orange juice on rice krispies or oatmeal in place of milk because of my allergies. (ick – it scarred me for life)
- I have a tattoo – on my back – between my shoulders – it’s a butterfly with my kids initials woven in.
- I am craving – craving another tattoo (or 3 or 4).
- My tattoo embarrasses the teen (the punk. It’s not like I go around flashing it to his friends).
- I have moments where I just want to walk away from it all. I don’t, but I have a flash of thought once in a while.
- I’ve been married for 10.5 years – and it’s been a bumpy ride, but we’re still going strong.
- If I could I’d have a pet snake – the husband would shit a brick, though.
- I love coloring my hair. It has nothing to do with the grays – I just like variety. In fact, it’s time again, what should I do next?
- I’m attempting to create a victorian era gown from the skin out. Underthings are done. Corset is half-done. I have the materials ready to go for petticoats and bustle. 🙂
- While I was obsessed with the Little House books growing up (seriously, read them over and over and over)…I hated the TV series because it was ‘too different’ from the books.
- The first 2 fingers on both hands and my big toes all turn inward (on toes it’s called a bunion). It’s an odd quirk I’ve had my whole life – although very soon I think my feets will need corrective surgery as they have begun to hurt.
- My ‘odd human trick’ that I used to be able to do was bark like a poodle. I cannot attest as to whether I currently can still perform this trick.
- I am a lifetime occasional smoker. I can almost always quit easily and I rarely go for more than a few months, but it happens. Now that he’s 15, my teen is highly vocal about his disgust in this sometimes-habit.
- I had an emergency hysterectomy 6 years ago. Best decision ever. I prefer hot flashes to the other mess. With 3 kids (proving my high fertility despite multiple attempts to NOT get pregnant) and frequent inactive cysts and having already lost 1 ovary in 99…I was beyond ready.
- I wrote a book. It’s been [amazon_link id=”B00BEMN5SC” target=”_blank” container=”” container_class=”” ]published[/amazon_link]. I wrote another, it’s coming out in April. Many more on the burner. I love being an author – between it and blogging, I have the best jobs in the world.
There’s 20 for now.
I figure I’ll do one for each member of the family over the next few weeks. I might even turn it into a weekly deal for some regularity around here that can apply to whatever happens to be going on.
by Sarah | Feb 19, 2013 | All About Denver, All About Erik, All About Family, All About Kennedy, All About Me, All About Molly, All of Us
Time is moving fast these days.
When I would like to sit back and breathe it in.
There are great things happening.
There are frightening things happening.
There are moments I want to hide away and pretend the world doesn’t exist.
And moments I want to just sit and enjoy.
When I was growing up I wished I was older. I wished I could do things I was too young for. I wished to be grown up.
Now I just wish for time to slow. For the days to not rush by in a whirlwind of activity and necessity.
Just yesterday I had a six year old son and was realizing that I might just be pregnant with Molly.
Now my son is a teenager, my daughters are almost 8 & 7. My marriage is ten years old. This blog is seven (really?).
We’ve gone from one neurotypical son to three special needs children.
They’ve grown up and are declaring independence and having dreams of their own (A doctor! A model! A teacher! Oh my.).
My husband has had his struggles and we’ve had ours together.
What I wouldn’t give for a chance to take my family outside of the home equation and give us time away. It isn’t in the cards this year, it never seems to be..and we’re running out of time.
Time that is moving way too fast.
Because soon, Denver will be in college. The girls in high school.
And we’ll blink and they’ll have their own lives.
Can we slow it down?
Just for a few days?
by Sarah | Feb 18, 2013 | All About Molly, Blogging Life, Indy Geek Girls
[flickr id=”8475700237″ thumbnail=”small” overlay=”true” size=”small” group=”” align=”left”]A few weeks ago I posted about Molly’s dream of being a “fashion girl”. Never did I imagine that making that simple post would allow me the honor of being able to help one of my children achieve their dream so quick.
One of the Indy Geek Girls, Katy, contacted me that same day and said that she might have an opportunity for Molly to be a model on the local morning news. She needed to check details, but it was a good chance she could be a model within the month. By last week it was a done deal & I just had to keep the tremendous news from Molly so she wouldn’t freak out too early. By Wednesday I caved and the next day was chaos.
Friday morning, bright and early we got up, we fixed our hair and makeup and hopped in the truck. Not before a few rounds of “are we there yet?” we managed to arrive about 40 minutes later.
[flickr id=”8476791438″ thumbnail=”small” overlay=”true” size=”small” group=”” align=”left”]By this point Molly was practically bouncing out of the truck, and my tummy was twisting in knots. How would she react in this place with all the excitement and new people and strange situations and cameras everywhere?
After a short time we were able to get her dressed and camera ready. She was bouncing out of her skin as we waited for the commercial break so we could head into the (surprisingly tiny) studio.
Finally the time came and Molly Cass was called on camera. At first, she later told me, she was afraid of messing up. It showed in her ‘deer in the headlights’ expression and the shuffle of her feet. Then…then she saw herself on the monitor and it all changed. She smiled and shone…and life was amazing.
For the rest of the day she was on Cloud 9 and even today she’s still talking about it and asking when we can “go back to Fox 59”. 🙂
I thought living my dream was amazing…
It’s nothing compared to watching your child live theirs.
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*~*~*
Molly’s outfit was provided by Blue Eyes & Barefeet.
by Sarah | Feb 14, 2013 | All About Kennedy, Cystic Fibrosis, Failure to Thrive (FTT), PICC, Special Needs
She is our challenge.
Defiant and fiery – but so easily turns on the charm with her doe eyes and a smile that you find yourself fighting HARD to keep your smile. She’s cute as a button, and the little snot knows it too.
Her whole life she’s looked her challenges in the eye and laughed.
Torticollis? “Puh…watch me straighten my head out”
Hypotonia? “Pshaw…you say I won’t walk until later? Watch me and my crazy crooked gate at 12 months. (And just wait, I’ll run at 15 months).”
CF? “Ha! I got this…”
And she (mostly) has for six years now.
CF? “I told you…I got this…”
But she doesn’t.
Something is falling behind.
It could be a tough infection that’s skillfully hidden from the throat swab.
Or maybe her “poor” weight gain is exacerbating her CF.
Either way, she’s not maintaining weight. In fact, she lost this time.
Worse, her lung functions & saturation levels do not make her pulmonologist happy.
And now the challenger of rules and attitudes and restrictions is going to be challenged again.
Tests.
A Chest CT.
A bronchoscopy.
We’re going to get results quickly. By the end of the month we should know what we’re facing next.
Maybe IV antibiotics.
Maybe a g-tube.
Maybe both.
Doc says CF is more aggressive in girls.
So Doc is more aggressive toward it in girls.
Doc sat on this concern for almost a year.
Watching.
Waiting.
Believing it would improve – that K would knock it out of the park.
And she almost did – back in December we were sure trouble had passed.
But trouble came back.
Now is where life gets interesting.
Where we go on a strong offensive.
Time to once again laugh in the face of this challenge.
Whatever it ends up being.
First step.
Tests.
Answers.
Then we fight.
I started with 20 for me last week…I thought Tuesdays would turn into a good day of the week to continue them. Considering I’ve spent the past few days (& will continue for another few days) to obsess over Kennedy and her tests…I’d take a moment and a day to focus on Molly.
