by Sarah | Jun 13, 2013 | All About Denver, All About Family, All About Kennedy, Cystic Fibrosis, Special Needs
It starts early.
Actually, the night before in a way.
As the teen is put on a fast, and we all go to bed early.
Because we have to leave at 7AM to get to the hospital at 8AM.
So the teen can drink that sickeningly sweet glucose concoction.You know the one, the same one we drank when pregnant.
And then we wait.
For two hours.
For more blood to be drawn.
Then the girl gets her blood drawn – which holy hell it’s like she’s being murdered.
Then it’s onto x-rays.
And functions.
And then we meet…
THE TEAM.
The social worker who hasn’t got much to say, but comes in every year. Makes sure we aren’t being killed by medicine costs. That we have all the ‘help’ we need.
The nutritionist that always tells us the kids are too skinny and to fatten them up. She gives us orders for calorie/fat boosting nutritional supplements.
The nurse that takes cultures and histories and makes sure all is clear.
The research associate that clues us in to new research projects we can partake in if we chose.
We break for lunch, and return and wait.
As our hospital is a teaching hospital we then see the Fellow. Who talks to us, examines both kids and heads out.
Then the doctor. Who examines both kids, goes over x-rays and future plans.
This year we had a change from the patter as the teen is being prepared for his own care. His exam was held in his own room where she went over the (still surprising to me) aspects of CF and how it could affect him and his future. The things no teenager wants to talk about in front of their parent…I mean EW.
It’s a full day.
Long.
Exhausting.
It ends with us grumpy.
Ready to get the heck out of there.
And grateful for another year.
It’s called a “birthday visit”.
A celebration of an anniversary i’d rather forget.
Kennedy’s is June 11th.
Denver’s is April 29th.
We meet them in the middle.
But in both cases, I’d rather forget that day.
The day we “knew” for sure.
Not celebrate it with a painful, long, exhausting day.
Although if we have to ‘celebrate’ such a ‘birthday’.
What better way than in misery?
by Sarah | May 9, 2013 | All About Denver, All About Family, The Teenager
I think we all remember being grounded at least once in our lives.
Or many times.
I never minded – I’d be ordered to my room and have to stay there…
But I had my books. Nothing better than being made to sit in my room and read.
It might have been more punishment to make me go out an socialize.
Crippling social fear can do that to a person.
*~*
These days I’m the parent.
The one doing the grounding.
I’ve got it easier than my parents (only in this instance…in many ways my parents had it easier…).
Because I can send down the worst punishment of all with one keystroke.
Change the internet access password.
BOOM.
It’s the end of the earth as he knows it.
No online games.
No chatting with the girlfriend.
No netflix.
All.
Gone.
Punishment dealt.
*~*
I do love a good password protected router.
by Sarah | Apr 16, 2013 | A to Z Challenge, All About Denver, All About Kennedy, All About Me, All About Molly, All of Us
He started it.
Growing up he had many cute saying, turns of phrases.
“I don’t like your shirt.” When he was mad (because he wasn’t allowed to say he didn’t like a person.)
“Fizzers” for feathers…because, of course.
But by far the favorite.
The one he no longer says, even if we do…
An expression of love.
More than “I love you.”
More than “I love you forever.”
No, he took it all the way.
“I love you forever and never be done.”
Never be done.
He doesn’t say it that way anymore.
Rolls his eyes if we say it.
But Molly says it now.
And I hope she keeps saying it for a long time.
Because we will never be done loving any of the three of them.
*~*~*
The A-Z Challenge has over 1900 participants, all blogging from A to Z this month. Check them out and see if you can’t find a few new favorites!!
by Sarah | Mar 25, 2013 | All About Denver, All About Kennedy, Cystic Fibrosis, Special Needs
Cystic Fibrosis.
The word hit me like a ton of bricks the first time Dr. A used it to refer to Kennedy.
My only experience and knowledge of the word harkened back to the TV show “Touched by an Angel.” The special 100th espisode “Psalm 151” that had guest stars Wynonna Judd (as the mom) and Celine Dion (as herself).
An 11 year old boy with Cystic Fibrosis that knows he doesn’t have much time left. He has a ‘list’ of items to complete…the final one being “Go to heaven.”
In the episode we saw a young child with the disease. We saw examples of chest percussions being performed (done by hand, not vest).
We saw an 11 year old die.
With that as your only experience, and a doctor telling you, “Don’ research on the internet, the stories will terrify you, let me talk to you first”…you sort of get a little freaked out.
Okay, you get a lot freaked out.
Dr. A’s reassurances that the diagnosis doesn’t mean what it did as many as 10 years ago did little to help my nerves.
Only living it has eased my sense of panic.
Seeing my kids live normal lives.
Is the worry still there?
Do I have a little heart attack at every high fever? At every cough?
Yup.
But with two kids living with it, and living well…suddenly having a bucket list at 11 doesn’t seem like quite as much of a possibility.
You just may have to remind me of that next time we’re in the hospital.
Deal?
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 8, 2013 | All About Denver, Random, The Teenager
We’ve known for years the kid was smart.
If we forget, he reminds us (teenagers, right?).
He has the lofty goal of being a doctor at Riley Hospital (Preferably a pulmonologist, but he’s not limiting himself).
It’s a goal he can reach bringing home an A+ in biology.
But then when you breakdown the grades and look at where he’s acing & where he’s slacking…
I realize the kid is just like me.
He doesn’t do homework.
He skates by with test grades & labs.
Just like I used to.
He keeps that up and the A+ could drop fast.
I know from experience.
Not that he wants to hear it.
Teenagers.
~sigh~
It starts early.
