by Sarah | Aug 26, 2011 | All About Denver, Cross Country, Cystic Fibrosis
[flickr id=”6083043811″ thumbnail=”medium” overlay=”true” size=”small” group=”” align=”left”] I knew he’d do me proud.
That was never in question.
But right out of the gate.
First meet of the season.
He blew me (and everyone that knew him) away.
He paced himself well.
Drafting behind another kid.
Then at the end hauled ass like you wouldn’t believe (see picture).
Pulling in 6th place overall.
4th on his team.
A final time (in the 1.9 mile race)…
Of 12 minutes, 12 seconds!!!!!
That is an entire minute than his best ever time.
His best placing ever.
The kid is a rocket.
And ready to roll the rest of the season.
He made me proud.
Okay, he made me cry – but I didn’t embarrass him by blubbering all over him.
Best.Race.Ever.  Until next week 😀
*******
P.S. Can I tell you how hard it is to photograph when you’re screaming your heart out for your kid?
by Sarah | Aug 9, 2011 | All About Denver, All About Kennedy, All About Me, Crap, Cystic Fibrosis, Special Needs
[flickr id=”5770111250″ thumbnail=”medium” overlay=”true” size=”small” group=”” align=”left”]
Tomorrow we have an appointment for CF Clinic.
I don’t want to go.
I don’t want to hear what she has decided for my kids this time.
After the ‘new’ and ‘definitive’ test.
After the genetics counselor.
After so much hell.
I’m tired.
Of doctors.
Of tests.
Of changing diagnoses.
After the last appointment (w/ genetics) I declared I was done. I never wanted to take any of them to a doctor again.
But I will.
I will find that strength again.
I will listen again.
And make sense of their decision.
And put trust in her because she is their doctor.
But I will still be tired.
by Sarah | Jul 30, 2011 | All About Kennedy, All About Molly, Autism, WTF?
[flickr id=”5885702740″ thumbnail=”medium” overlay=”true” size=”small” group=”” align=”left”]She poked her in the eye.
I know you’ve all heard the story in snippets on twitter, but oy.
Yesterday morning a LOUD scream echoed out from the girls room. Â The one that said “True pain” not “drama queen” like Angel’s usual screams.
When I ran in she said that Riley had poked her in the eye. Â I thought, at first, it was a typical brief poking, no real damage and she’d be fine. Â Calmed down the situation and it seemed okay…but then it wasn’t.
Angel kept crying in pain every thirty minutes or so, moving up to ear splitting screams. So I took her to the pediatrician.
A large scratch (like a cm wide, 1/2 cm thick) right over her pupil.
It was intentional.
The poking, if not the depth of the result.
Angel spent the night in bed w/ me, Archie slept on the couch. I got to hear the heart melting words “Mama can I snuggle with you?” in my Angel’s darling cute little voice.
Today things are better…Angel isn’t shrieking in pain every 20-30 minutes…the ointment they gave her appears to be helping…and she’s rocking the eye patch. The girls are getting along again, even though Angel is telling her sister not to hurt her on a more frequent basis.
I don’t know where we go from here, but I know we need help. Â Riley needs help. I’m certain she needs more than the school can provide, but the school is where we’ll start, while I schedule an appointment w/ the developmental pediatrician and wait until we can get in (likely to be a few months).
by Sarah | Jul 28, 2011 | All About Molly, Autism, Special Needs, WTF?
[flickr id=”5984317283″ thumbnail=”medium” overlay=”true” size=”small” group=”” align=”left”]
Since halfway through Kindergarten Riley has been an avid reader. Fervent. Excited. Searching. Learning. Teaching.
She taught her sister to read.
She devoured so many books.
Books are one of her distinct and clear joys.
So last night it was a shock.
A horror.
Dismay.
Hearing a noise from the girls room, I went into their room.
Riley was lying in bed calm as can be…
Ripping apart her books.
Five of them.
Destroyed.
All the pages strewn across the floor.
When we asked her why she said that she was happy.
She was happy.
So she ripped up her books.
Then it was pure horror when she realized she was not going to be able to read them ever again.
To top that off she’s beating up her sister again.
Fiercely.
There are scratches all over my Angel’s back, shoulders and HEAD.
We are concerned.
Because she ripped books.
But its a flag.
And we are concerned.
by Sarah | Jun 28, 2011 | All About Denver, All About Kennedy, Cystic Fibrosis, Special Needs
Today we met with the genetics counselor.
We left with nothing.
Nothing new.
The suggestion that a grad student may want to write a paper on our freakish family to be published in a medical journal.
We’re weird.
The science cannot explain the CF abnormalities in our family.
The only thing ‘new’ we learned was the specific genetic defects on Angel & Brandon’s CFTR gene. We have names for their CF.
But no more answers.
And so we soldier on.
With CF diagnoses that have no solid genetic confirmations.
With treatments for a disease that is “Atypical”.
We wait and see if one day our freak family will be put on parade in the hope of ‘helping’ the scientific community.
We wait and see how mild or active the weirdness of CF becomes for our kids.
We wait for nothing to change.
We wait for everything to change.
We wait.
by Sarah | Jun 21, 2011 | All About Kennedy, Special Needs
Angel was a mere two months old.
Adorable.
Small still – almost preemie-like.
I had just fed her, holding her until she fell asleep.
I set her in the car seat I let her nap in.
Set a blanket over the car seat to shield her from the bright light of my bedroom and settled back to read.
It wasn’t five minutes later.
There was a sound.
One I will never forget.
Choking. Wet. Gurgling.
The blanket was thrown aside and I saw my precious baby twisted and still, eyes wide. Not breathing. Not moving.
We were in the car and flying to the hospital within a minute – no small feat with three kids
That was the day I ran into the ER in tears screaming that my baby stopped breathing.
Never have I seen that ER team move that fast.
Never have I felt the terror of wondering what had happened, fearing the worst.
They feared a seizure and ran tests.
She was in the hospital for 48 hours.
In the end, my baby was okay. We never really knew what happened. Perhaps it was reflux, choking on her own spit up thanks to her dysphagia. No infection was found.
But I will never forget the sound. The sight. The ER visit. The terror.
It helps me remember how lucky I am that she’s here. That they all are.
