by Sarah | Mar 10, 2014 | All About Denver, All About Erik, All About Kennedy, All About Me, All About Molly, Redefining Perfect, Special Needs
Every day I wake up, and my first thought is of my kids.
My first emotion is fear.
Will today be the day Kennedy gets sick? Maybe sick enough for the hospital?
Will today be the day Molly has a breakdown? Will I need to go to school because she isn’t manageable?
Will today be the day Denver ends up in the hospital…again?
Every parent has fears and worries, and mine aren’t “worse” – they’re just different.
But they’re real.
There isn’t a day that goes by that I don’t suffer through the torments of worry. Whether through a passing thought, or an entire run through of possible calamity. Whether for one child, or another, or even all. Whether triggered by a cough, or a teacher email, or just my overall sense of awareness.
It’s always there, lurking, leering, waiting to pounce.
Every day I wake up afraid.
Every day I shove the fear aside and face the day.
I don’t have a choice, and I don’t want one. So long as I can push the fear aside I will. It’s a defense mechanism. Preparing me for the worst, so the every day can feel better for me. So I can see the bright side when things look horrifically dark. So when the worst does happen, I am prepared. I am ready for the hospital check in. I am ready for the teacher meeting. I am ready for the specialist appointment.
I’ll embrace the daily fear, as long as I can continue to see the daily joy.
*~*
Written for Things I can’t Say’s Pour Your Heart Out
by Sarah | Mar 3, 2014 | All About Molly, Autism, Redefining Perfect, Russell-Silver Syndrome, Special Needs
One of our family’s favorite board games is SORRY! We play round after round on family game nights.
One thing no one ever likes is getting “Sorry’ed” right back to their start. One or all of us have been known to whine and groan over the inevitable gleeful “SORRY!”
No one likes being told to go back to start.
Now, that’s what we have to do.
Almost six years ago Molly received her “official” diagnosis of Autism (as well as Russell-Silver Syndrome). We foolishly felt relief at the diagnosis thinking now we could get help. We didn’t know what the road ahead of us held.
Now we’re drowning.
Since Molly is so high-functioning (possibly Asperger’s?), that our concerns are often set aside by others (i.e. the school) until a specific behavior presents itself. Every year we go in and try to be prepared for everything, but one of a few things happens.
- She starts off so off-kilter by the change of schedule/new event that any quirk seems mild by comparison
- Her behavior is so beautifully spot on and normal that any deviation is like a sudden attack on everything we thought we knew (or rather, they thought they knew)
- A new behavior develops that not even we suspected
This year we have reached a breaking point. The school has set her on a new behavior model because she degraded so tremendously after Christmas break. She isn’t listening to her teachers, she’s refusing to do anything, and she is avoiding tests like the plague (w/ standardized testing in a few weeks, this is not good, even w/ IEP accommodations).
The development of a possible learning disability on top, plus lack of focus, and weird tics and behaviors at home had Erik and I at our wits end.
We called the doc and got her in for her annual physical and set about finding out the next step.
Our pediatricians best advice?
SORRY! GO BACK TO START!!
So we must return to the geneticist that gave us our initial diagnoses. We’ll need to use him to unravel the confusion we’re currently in. There may be treatment for ADHD, we may see about getting her into a local ABA treatment, we aren’t sure what’s going to happen, but we have to go back to the beginning.
Again.
It’s a never ending process of hurry up and wait.
Mostly, Erik and I need to find local support. We find ourselves at such a loss so much, that we’re grasping at straws that aren’t there. We don’t know how to handle things, and that’s something that’s really hard for both of us to admit.
Now we wait until May to meet with Dr. E again, six years after our last appointment. Hopefully he’s able to help not just her, but us, figure out how to go forward now.
All we want is for her to be happy.
At peace.
Peace is so hard to come by.
*~*
Written for Things I can’t Say’s Pour Your Heart Out
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 16, 2013 | All About Kennedy, Anger Issues, Special Needs
*Side note – to date this is my absolute favorite picture of Kennedy. 😀
When you first meet Kennedy, and often for many meetings after, you see the sunshine.
We once pegged her as the ‘smilingist’ baby ever.
She has it all.
The eyes that melt your heart with their bigness, their brightness, their expressiveness.
The cheeks that run in the family – from birth until teens just adorable, chubby, and pinchable.
The silly grin. It lights up her face, or quirks just a bit to make you forget the anger and lean to laughter.
Don’t get me started on the baby-doll voice. Cupie doll, sweet and tiny.
No one can believe it.
Not unless they ever see it.
No one understands it.
The completely opposite.
Desperately different.
Achingly painful.
Underbelly of that sunshine.
When we mention the way she can burst your eardrums we get the “You’re kidding, right?” look.
When we mention the temper tantrum she threw – they think we’re being silly. We don’t know what a real tantrum is like, what real anger is like.
But they weren’t there to watch her slam her head into the corners of walls, into the hardwood floor, into our faces.
They aren’t here to see her intentionally dig at her nose until it bleeds so often she’s building scar tissue.
Some days I feel like people look at me like I’m making it all up.
Some days I wonder if maybe I’m overreacting to the anger.
That on top of everything else this one thing is unbelievable.
Because she is sunshine.
With every heart-wrenching smile – she is sunshine.
When I am at my angriest she can make me lose hold of it and smile.
But she gets angry.
Mind-numbingly, ear-splittingly, heart-wrenchingly angry.
Things are better these days.
A little.
At least she isn’t trying to break our noses on a regular basis.
But her teachers notice.
It’s out of line with “normal” temper tantrums.
And for this – for this I don’t know how to help her.
Everything else has a solution.
A therapy.
A doctor.
A…something.
This?
Most of the time, I don’t know how to handle this.
I let the flame burn out.
And wait for next time.
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.
Every day I wake up, and my first thought is of my kids.
