by Sarah | Jun 4, 2014 | All About Denver, All About Erik, All About Kennedy, All About Me, All About Molly, All of Us, Anger Issues, Autism, BiPolar with Hypomania, Crap, Cystic Fibrosis, Random, Redefining Perfect, Special Needs
There are minutes.
Hours.
Days.
When it’s all too much.
When everything hits at once and I just want to collapse.
Cry.
Crawl in a hole.
Run.
One child with autism – now on ADHD meds.
Two with CF.
One of those that’s currently ill – and facing possible hospitalization for the second time in a year.
One of those that also has behavioral issues that make me wonder just how to handle it all with her.
A dad with Parkinson’s…which is rapidly growing worse.
A mom I want to help, but am clueless as to how.
A brother I haven’t spoken to in 2 years, with whom I’m now making baby steps to repair that relationship.
Finances.
A new job I never wanted, but needed to get.
A surgery to “Fix” a problem…that didn’t work at all, and might have made it worse.
The list goes on.
And on.
And I forget how to breathe.
I forget which way is up.
But I move on.
I continue on every day as I have every day.
Eventually I remember how to breathe.
My brain remembers how to process.
I find solid ground again.
Today I’m upside down.
Tonight sleep won’t be easy.
But maybe tomorrow…
Tomorrow will be better.
by Sarah | Jan 22, 2014 | All About Kennedy, Cystic Fibrosis, Special Needs
One of those “perfect” dreams I had when I was pregnant, especially when I heard it was a girl, was doing their hair.
I couldn’t wait to braid and ponytail and twist and bun. I’m not kidding when I called it a dream – because I did actually dream of doing these things.
Several years ago I tried. As you can see in the picture, while I managed to make some complex hair styles, Kennedy had thin, thin, thin, hair with a few bald patches in the mix. In this picture, K is 4 years old.
Another problem she had is how insanely brittle her hair is. I have pictures of the back of her head where it looks like a hellish rats nest – freshly brushed. It is so brittle and harsh, it’s hard to believe.
Today my little beauty is nearly 8.
And her hair is, if possible, worse. After a brief period where her hair seemed to thicken, it’s once again thin, exceptionally brittle, and she has resumed the issues of bald patches. Currently, her hair is kind of really long – or at least part of it is. There’s been so much breakage, that it gets sort of thin at the end, and dead.
I’d love to attribute this to genetics, but neither Erik nor I ever had an issue like this. My hair gets brittle now because I’m such a ginormous fan of colorizing…but mostly mine’s very thick and healthy, and so is Erik’s.
So…we think it’s the CF.
We’re going to step up her vitamin regimen a little, and this weekend we’re taking her for a cute bob-style cut…but what else can we do?
I’d still love to be able to achieve the dream of doing her hair while she’s still young enough to want me to.
Or at least let her have the chance when she gets older.
Any tips, tricks, or natural remedies for thin/brittle hair?
(For reference, we have used the BioSilk product on her…yes, I know it’s not natural, but it’s AMAZING when we have time to do it…I use it on myself, too. Love that stuff, but it only helps with the dead ends and softening. I wouldn’t mind some equally amazing natural remedy!!)
by Sarah | Jan 17, 2014 | All About Kennedy, Cystic Fibrosis, Special Needs
It started back in November.
An unusual phenomenon brought on in the unusual life of Kennedy.
She would start coughing.
Oh, sure, a CF patient coughing? Pfft, what’s the big deal?
For starters, it wasn’t a panic inducing wet, deep, ugly cough.
It was dry.
Random.
Every time we checked on her she’d declare “I just swallowed a string!”
After a while, she got annoyed with us constantly checking on her whenever she’d have another coughing fit.
This week, Kennedy had a checkup in the CF clinic and Erik asked the doctor about it.
Turns out, Kennedy can paraphrase the Disney movie, The Princess and the Frog.
“It’s not strings – it’s mucus!”
Yeah. We learned something new, and Kennedy can now yell at us appropriately.
Apparently it’s normal. The mucus in a CF patient is thicker, and when it gets in their throat it’s the uncomfortable sensation as if you’ve swallowed a hair that’s just sitting in your throat.
We don’t have to worry unless her cough becomes wet and thick.
Of course, that’s assuming we ever stop worrying.
(P.S. We don’t.)
by Sarah | Nov 12, 2013 | All About Denver, Cystic Fibrosis, Hospital, Special Needs
The teen was in the hospital recently.
A brief (in our book) stay at the hospital kept him out of school for approximately a week.
That was, unbelievably in some ways, almost 2 months ago.
Since then his struggle to get back into his previous stellar grades has been immense.
Whether a genuine struggled to get “Back on the horse”
or just general rebellion
the grades have remained low,
assignments unfinished,
and general malaise has centered around school.
I’m sort of ashamed to admit I broke out the story.
The age-old old-farts beginning sentence of “When I was your age”.
Because I once had an 8 week bout of mono.
Out of school for 8 weeks and my grades were BETTER than they’d ever been with me in school.
So I broke out that story.
And ended it with the general rule of thumb in this house.
We don’t let our labels define us.
We don’t let them lead our lives.
No.
Illness isn’t an excuse.
It never will be.
So buck up.
Suck it up.
Do your homework.
And don’t let CF or hospital stays win.
by Sarah | Oct 24, 2013 | All About Denver, Cystic Fibrosis, Special Needs
Three years ago we didn’t know.
Three years ago Denver had “asthma”. An occasional inhaler on the Cross Country field was needed.
A yearly, to bi-yearly round of antibiotics to treat pneumonia (which was my clue).
Then we got the diagnosis.
Last year was the first hospital stay.
1 full week.
The life-changing event still didn’t change much at home.
An occasional inhaler. A prescription for vitamin K. A small device for his percussion that he could carry with him it was so compact.
Fast forward another year.
Another hospital stay.
And Denver gets his first new car.
No, wait. It just costs as much.
The dreaded “vest”.
Or as Kennedy always calls it “The shakey-shake”.
We expected him to progress.
But not so fast.
Half the time I feel so blindsided.
I hate that he is so painfully aware of every change in his body.
I hate knowing that is sister will also progress one day, definitely before I’m ready, hopefully not before she’s ready.
Denver is smart, very intelligent, he researches and reads and wants to be a doctor after all of this. He gets it, and he lives it, and he tries to move beyond, although I think he had some trouble this year. His hospital stay came right at the start of Cross Country season and threw him off for the rest of the year.
Kennedy is showing signs of great intelligence.
Who knows, maybe one day one of them will be the doctor that finally cures this disease.
But for now they’re still my babies.
And they are tied to machines for at least thirty minutes out of every day.
And it hurts.
I don’t like that this is their ‘normal’.
I don’t like that Denver now has to add the “shakey-shake” into his schedule.
I never will.
by Sarah | Oct 3, 2013 | All About Denver, Cystic Fibrosis, Hospital, Special Needs, The Teenager
Teenagers are expected to rebel.
When they don’t you worry. I wasn’t huge on rebellion, but I found my own way to rebel – by ignoring my scholastic capabilities.
I never expected to be faced with a whole different sort of rebellion in my kids.
Medical rebellion.
It’s a dangerous game.
The “I feel fine, so I don’t need to maintain” game.
Now we have the new, added complexity of a compression vest.
Something the teen does not want to do.
Already he doesn’t do the things he doesn’t mind, and that only take a few minutes.
Maintaining seems like such a hassle when you’re fine.
Especially to a teenager.
Even a teenager that dreams of being a doctor.
Of all the things in my life that cause me stress and worry.
Medical rebellion resides at the top of the list.
Couldn’t he just give himself a mohawk and wear black and be all emo?
That I could handle.
I lived through that as a teen w/ best friends that weren’t…preppy…at all.
I could handle emo.
This medical rebellion crap?
It sucks.
There are minutes.
