by Sarah | Jul 2, 2011 | All About Kennedy
[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 | 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.
by Sarah | Jun 7, 2011 | All About Kennedy, All About Molly
The first time I read them I was four years old.
I stole them out of my brothers room and kept them tight.
That original box set still sits on my dresser.
Dog eared.
Worn.
Missing covers.
Now the girls are reading.
Everything they can get their hands on.
Now I pass these stories onto them.
We read together, they try to read alone.
One day I hope their copies are as worn and well loved as mine.
As well as every other book they touch.
The love of reading runs rampant in Archie & I.
I think they’ve caught the bug.
No better addiction to pass on.
by Sarah | May 26, 2011 | All About Denver, All About Kennedy, Cystic Fibrosis, Special Needs
When a pulmonologist with over 20 years of experience declares your family’s case is “Weird”…you know you’ve got issues.
Yesterday Angel had her (4th) CF birthday visit. Brandon had his first CF visit ever.
There was the standard blood work, sputum cultures and x-rays done and then after lunch we got to meet with our pulmonologist. During the entire day the oddness of our family’s case was expounded upon.
* Both have defects on the CFTR gene. They both have slightly different defects. Angel’s leans more in the ‘standard’ CF direction…Brandon’s does not.
* The defect for both kids is one that has not been seen before.
* It is generally thought that their case of CF is “mild” as per the standard.
* Both of them had positive sweats, but in a low-positive area.
* In the strangest note of the day the pulm said that you could lay Angel’s x-ray on top of Brandon’s and the affected area in both of them would match up perfectly. They have almost identical lung damage in the almost exact same place.
We are moving forward with them. Their treatment plans are set. Brandon will have another test (a new CF diagnostic test).
We will meet with the genetic counselor still – the appointment is a month out. It was suggested that because of the oddness of our case we may all end up having our genetic tests run.
Until then we continue on. As we have been.
One foot in front of the other. One day at a time.
by Sarah | May 22, 2011 | All About Denver, All About Kennedy, Cystic Fibrosis, Photography, Weekly Winners
All taken w/ Canon Rebel XS.
Today we walked in the Great Strides walk to raise money for the Cystic Fibrosis Foundation…All of my pictures today are from and in honor of the walk. We’re still accepting donations, so if you have even a spare dollar to help us find a cure, click my button over there. Even though CFF is getting closer to a cure every year, even today we had a moment of silence in honor of a 17 year old that had lost her battle with the disease just last week.
Purple for the Cure
Ready to Walk
Dropped
Twisting to Throw
Bracelets of Hope
Blow it Away
Walking for a Cure
Sunglasses Please
Sprinting Ahead
In my small little team, the two that were my CF babies decided to race on ahead of the rest of us…and literally ran right out of sight.
You can find more pictures over at my flickr account.
That’s all for this week. Head on over to Lotus‘ digs to see more!!
