by Sarah | Nov 2, 2012 | All About Denver, Cystic Fibrosis, Special Needs
Just a couple of days ago I lamented the wait to get into a doctor. I think I knew then. I just knew. That’s why I panicked.
I ignored the instinct and let myself be soothed.
And he ended up here.
He probably would have anyway, but the timing might have been better – but that is a different post for another day when I can step away from my anger.
Before the doctor entered the room, she was already sending the nurse to find him a room, writing orders for strong antibiotics, a PICC line and extensive breathing treatments.
He’s in until Monday.
But he was just diagnosed a year ago.
Already he’s in for a CF related illness.
He didn’t start getting sick until about 5 years ago.
It was once a year.
This year – it’s twice.
Knowing this disease is progressive never scared me as much before. Not until it took less than 2 years for Denver to end up here.
Not until it took 2 days to get bad enough to require this.
Not until knowing that despite the amazing functions he usually has, the life full of Cross Country & playing, he could degrade so far so very fast.
It’s frightening.
Not just for us.
For him – now that he’s living it.
by Sarah | Oct 30, 2012 | All About Denver, Cystic Fibrosis, Special Needs
When I had Denver – I was so spoiled by fate.
As a single mother, living with my parents it could have been more difficult – but Denver was always an easy kid.
Those milestone ages and events? He met the deadlines perfectly.
The ages used for sizes on clothes? Met those perfectly too. Moved into 6-9 month clothes at 6 months. Until he grew into size 7’s, that was the norm.
Everything for him was met at the perfect age. He was well behaved and polite – and still is to everyone but his ‘stupid parents’ (he is a teenager, after all. We are the enemy now). He’s a good kid.
I never really had to worry.
The only time I worried & panicked – Mom instinct had kicked in. He went on a camping trip for Scouts and I knew before he left something was going to happen – and it did. That’s when he broke his wrist. Call it a premonition, call it instinct, but I did panic (once the phone call came) until he made it safely home.
That was all before the light bulb went off and his chronic pneumonia finally hit me hard enough to test him for CF.
Now he has the diagnosis but the unusual nature of his diagnosis (and his sister’s) they are both listed as “atypical” CF.
The thing that worries me, is that I’m sitting here listening to wheezing, he’s struggling to breathe, but despite a nurses first instincts, we aren’t going to the ER. The doctor dismissed that idea. We’re being made to wait to go in until tomorrow. If his condition worsens we’re to go to the ER, otherwise we sit here for over 24 hours past when he woke up because he struggled to breathe.
I’m hoping that it’s because he has no fever. That it’s a logical explanation.
But I can’t help feeling like maybe the atypical nature leaves them to react less.
I’m sure I’m just being over-protective and paranoid because I’m so very worried.
Right?
by Sarah | Oct 18, 2012 | ADHD - Adult, All About Erik, BiPolar, BiPolar with Hypomania, Depression
I’ve spent a couple of days trying to figure out how to write these posts now that I have the all clear to do so. Then I realized I had to start at the beginning.
This is my husband Erik (handsome, isn’t he? Just help me out & tell him to shave).
He was born here in the same small town we live in. Just the next street over is where his parents lived when they brought him home. He was adopted 3 days after he was born, and it became official some months later.
When he was first born he proved to have some issues with his eyes & their musculature and ended up having seven (if I remember correctly) surgeries on them before he turned 2.
Whether it was the surgeries or genetics, we can’t know – but shortly after the turmoil of constant surgeries there came some personality issues.
At 3 years old he was put on his first medication. Since the age of 3 the sort of medication and the diagnosis has changed over time. He’s been on Ritalin, anti-psychotics, anti-depressants, and he’s shunned them all at times for the self-medication of alcohol (at both inappropriate and appropriate ages).
To hear him describe it, he always felt separate. Apart.
The outsider.
In school.
At home.
In his own head.
Some of it he blames on the sense of abandonment he still feels for being adopted. Some of it on his own “stupid” biology. He also heaps a lot of blame on himself.
For so many years he floundered.
Made many mistakes.
Lashed out in anger.
Pain.
Confusion.
Chaos.
And then, he broke.
As most people with mental disorders do.
He wound up in the stress center – checked in for a period of time.
Once he came out he had the clear cut diagnosis of severe depression. He was put on several meds before settling on a mix of Effexor (which I have come to despise, but more on that later) and Wellbutrin. Sent back out into the world “better.”
He thought his life would be good after that.
It was supposed to be better.
But mental disorders are never that easy – and never that cut and dry.
*~*~*
*More coming soon. It’s a long story and I shortened this part intentionally. There’s much that happened before we met that I don’t fully know or understand…and things we still can’t talk about…and that don’t need to be said. I mostly wrote this for a little background before we get into meeting me & the life we’ve lived up to this point and where we are now – and where he is now.
by Sarah | Sep 27, 2012 | All About Kennedy, Cystic Fibrosis, Failure to Thrive (FTT), Special Needs
[flickr id=”8012257268″ thumbnail=”small” overlay=”true” size=”small” group=”” align=”left”]Since birth the girls have been tiny. Hell, all my kids rock the bottom of the growth chart. Always. It’s in their genes. Up until 3 kids & a hysterectomy totally made my body go haywire I had insane metabolism. I remember hours spent in my pediatrician/allergists office playing with the toys he had on display while he discussed my growth chart (and how I was well below 0%tile) with my mom.
It’s a familiar theme.
One that in standard circumstances is a concern, but not panic inducing.
We eat.’
Tons of food.
We just don’t gain.
Metabolism rocks until it actually works against us. And trust me, as a teenager being asked if you’re anorexic when you eat like a horse is NOT fun. It really sucks.
But this goes beyond personal suckage.
When you combine Cystic Fibrosis with the words Failure to Thrive.
You get a heap of shit-panic-stuff-the-kids-faces-until-they-can’t-eat-any-more to deal with.
Back in June both my CF kids rocked the weight chart. For the first time ever the nutritionist said “we dont’ have anything to worry about here, keep doing what you’re doing. They look great.”
For the first time in her entire life Kennedy looked AMAZING. In the 10th%ile for BMI 10th! Dude, in this family that is some serious awesomeness. Worth celebrating.
Now, just 3 months later we’ve stalled. Flatlined. Kennedy gained almost nothing in the past 3 months. Her BMI is back at the bottom, in below the 5th%ile. Amazing how fast the growth chart swoops up to wipe away previous progress.
Again, in an average situation we’d not panic. But now we have 2 months to get meat on her bones.
2 months. Make sure at school she’s allowed extra snacks, extra time at lunch to finish. whatever it takes.
If we don’t put meat on her bones, they put a g-tube in her belly.
In a society where everything is marketed to keep obesity at bay.
I have to find ways to put weight ON my kids. Lots of it.
So that we can avoid the g-tube. The g-tube is not welcome here.
by Sarah | Sep 5, 2012 | All About Kennedy, Anger Issues, Special Needs
[flickr id=”6936627216″ thumbnail=”small” overlay=”true” size=”small” group=”” align=”left”] *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.
[flickr id=”6936590242″ thumbnail=”small” overlay=”true” size=”small” group=”” align=”right”]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.
[flickr id=”6936587076″ thumbnail=”small” overlay=”true” size=”small” group=”” align=”left”]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.
[flickr id=”7082668411″ thumbnail=”small” overlay=”true” size=”small” group=”” align=”right”] 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 | Aug 29, 2012 | All About Kennedy, All About Learning, Anger Issues, Special Needs
[flickr id=”7665946732″ thumbnail=”small” overlay=”true” size=”small” group=”” align=”left”]The day before school started I got an email from Kennedy’s teacher.
After reading the excited, bouncing off the email, energetic note of welcome before school even started I took to twitter and commented that Kennedy had a “perky” teacher and that I might be a wee bit frightened.
The feeling continued when the first day of school came with another bouncy email and a mass of papers to fill out about Kennedy – her personality, strengths, weaknesses, etc. More than any of my kids have brought home from any teachers.
Of course I got to go to Kennedy’s “meet-the-teacher” night while Erik went to Molly’s – so I got to meet the bubbly teacher myself. She didn’t disappoint with her very friendly and enthusiastic intro into the world of 1st grade.
I think I became a little more frightened.
Then yesterday happened.
The first time Kennedy’s notorious temper reared its ugly head.
I knew about it pretty darn quick. The teacher emailed me withing an hour or so of it happening. We communicated through the day, and I was able to deal with it when Kennedy got home.
I was scared of the perky, bouncy teacher…until I realized that it could lead to a year of excellent communication and possibly a better way to deal with Kennedy’s anger issues.
Embrace the perky.
I know I will. 🙂
Just a couple of days ago I lamented the wait to get into a doctor. I think I knew then. I just knew. That’s why I panicked.
