by Sarah | Nov 5, 2013 | All of Us, Crap, Random, Special Needs
*Otherwise titled “The post in which I piss people off.”
From the time our troubles started, from the time we first realized there was just something ‘off’ about Riley. From the day We realized Angel’s torticollis was more than just a lazy neck and a heavy head. From the day we realized Angel’s cough was going for a month and showed no signs of letting up. From the first time Angel intentionally injured herself. From the first toys Riley lined up. Every day, every night, every in between we are aware. We notice when Angel runs out of steam before she’s played for ten minutes. We notice when Riley is starting to retreat into her shell. When we’re in danger of a meltdown of epic proportions. In danger of a night of a screaming, pouting, angry Riley.
We notice it all.
We see it in the every day.
We see it in the little things.
Every action, every reaction.
It’s a part of our lives. It is our every day.
Then you come along and say “But she looks just fine to me.” Or “She doesn’t seem autistic.” And of course the “She doesn’t act sick.”
I know you mean well. Really, I do.
But I hate it when you say that.
It’s like you’re belittling our every day.
The hours at doctors and specialists. The hours calming and refocusing an over-stimulated child (longest meltdown stands at 36 hours). The hours a day hooked up to machines to live every day. The way I lay awake at night listening to labored breathing. Check temperatures every time we feel a little warm.
I know you don’t mean it this way. I know you just mean to say that despite their troubles they look healthy and happy. That unlike other children with special needs it’s not a visible/noticeable difference.
But I hate it.
Just say they’re beautiful. Say they have a great smile. They look like they’re having a blast.
Don’t contradict what we KNOW. Riley does have autism (no matter how mild). Angel does have CF, and right now she is sick (and we spend every day wondering just how badly it’s holding on).
It is our every day.
We try to live life beyond our labels – and we only succeed by accepting them and integrating what they mean into our lives.
*~*
*This post is a re-post from a couple of years ago. It’s still very relevant to us today.
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.
by Sarah | Sep 30, 2013 | All About Kennedy, All About Learning, Anger Issues, Special Needs
* <–This picture really says it all when it comes to my kids.
Denver is the aloof teenager.
Molly is the shy, slightly awkward middle’un.
And Kennedy…
Well, we love Kennedy.
She’s got the attitude.
The stubborn streak.
The temper.
*~*
Last year over the course of the school year we had many issues with Kennedy.
Her grades and smarts were impeccable. She moved into the advanced reader classes, and has continued on that course this year.
However, we had other issues.
Lying.
Stealing.
Stealing again.
More lies.
There was regular emails between myself and her teacher to verify facts and get our ducks in a row.
Her temper was another issue again, frequent, but not overly so.
She went to ‘friendship classes’, and had sessions with the guidance counselor.
It was quite a year for little K.
*~*
This year we debated.
“Do we warn the teacher?”
We decided not to.
We gave her a pass, a clean slate to try to make this year better all on her own.
So far, it appears to be working…
but we’ll know for sure at Parent Teacher Conference.
~fingers crossed~
by Sarah | Sep 18, 2013 | All About Denver, Cystic Fibrosis, Hospital, PICC, Special Needs
The hospital the kids go to for their CF is a teaching hospital. It always has been.
There have been many times we’ve gone to clinic and met new residents or fellows that were learning the craft from our top-notch pulmonologist.
Some don’t stick around for a while, others are around for at least a year.
The changing faces can get confusing when you’re in a long-term treatment plan like we are (or are terrible with names like I am).
When you’re in the hospital there are some definite positives – and definite negatives.
Positive – you have a team of doctors working your case. You know you’re getting the best care and a variety of input on your treatment.
Negative – you have a team of doctors working your case. Every morning each member of that team comes in to check breath sounds. Not all together to get it done once…nope, one by one over the course of an hour.
Positive – There are more nurses and therapists working your treatments and procedures.
Negative – sometimes the room is overcrowded with people each dedicated to your care.
This hospital is the best place for care. I know the people care about my child and making him healthy.
I know that there are many people working his case.
But it’s still overwhelming and frightening.
by Sarah | Sep 16, 2013 | All About Denver, Cystic Fibrosis, Hospital, PICC, Special Needs
320 days.
Not even a full year.
320 days ago Denver was admitted to the hospital for diminished lung sounds and functions. He got sick in two seconds flat, and was in the hospital 2 days later. They wanted to keep him for a couple of weeks, but he was able to go home after a week. Then stayed on antibiotics for a month.
Back in the spring he had a short bout of illness that was treated with antibiotics.
A month ago he got sick again.
It wasn’t too bad, his lungs sounded clear. He was put on oral antibiotics for 2 weeks.
Things improved…
For a time…
Until they got worse.
Earlier this week the occasional low grade fever crept back up. Lucky for him, he had a CF Clinic appointment. The pulm put him on another round of oral antibiotics – a larger dose over three weeks again. We thought that would be it.
But he felt poorly enough to skip two Cross Country practices, which meant not running in the meet on Saturday.
I should have known then.
I didn’t.
Saturday night, after having been on antibiotics for 48 hours, Denver came to me. Being the teenager he is, he didn’t say much, just that he was coughing and it hurt when he coughed. Plus, he hadn’t been coughing before.
He didn’t verbalize how much it hurt, but I could see it all over his face.
The pain.
We put a call into the on-call.
We were given a night’s reprieve based on how he felt, and were told that unless he gets worse, we could call back in the AM and we’d have a bed ready for us when we did.
And so at 7AM this morning we hustled on in.
Got him admitted.
Tried to work out details with the kids and our one vehicle and making sure the kid and I have all we need here to make it through a week.
At least.
I told him I didn’t want to be here again this year.
Contrary teenagers don’t listen.
From the time our troubles started, from the time we first realized there was just something ‘off’ about Riley. From the day We realized Angel’s torticollis was more than just a lazy neck and a heavy head. From the day we realized Angel’s cough was going for a month and showed no signs of letting up. From the first time Angel intentionally injured herself. From the first toys Riley lined up. Every day, every night, every in between we are aware. We notice when Angel runs out of steam before she’s played for ten minutes. We notice when Riley is starting to retreat into her shell. When we’re in danger of a meltdown of epic proportions. In danger of a night of a screaming, pouting, angry Riley.
Then you come along and say “But she looks just fine to me.” Or “She doesn’t seem autistic.” And of course the “She doesn’t act sick.”
