Like it or not, pain and fear goes hand in hand with cerebral palsy.
Jennifer recovered fairly quickly from her operations, she was checked out on a Thursday and by Sunday was pretty much back to her normal self.
Or so we thought. ….
For her to have discomfort around her operation sores was a given.
What we didn’t prepare for, was for her to experience the fear like she did when she was younger.
Jennifer’s always been sensitive to sudden loud noises.
When she was smaller it would take us much as a door closing to make her cry with fear.
Things have gotten gradually better, there’s still certain noises that scare her and make her scream, but once she’s understood that noise, or even better if you can prepare her for it, things are much better.
The vacuum cleaner used to be the worst, now she just laughs when we tell her it’s coming and we turn it on.
She feels safe, secure and assured in her dark little world, as long as she has a warning, and she understands that warning.
Jennifer may never be able to tell you or even show you what 2 + 2 equals, doesn’t mean she can’t add up the people sitting around her.
She’s actually quite inquisitive, and that makes her feel safe once she knows she’s in control.
On the contrary, she hasn’t a chance of understanding what happens to her at the hospital.
So what happens then when everything you’ve worked on teaching her gets suddenly disrupted by surgery?
Needles are shoved in her, she awakes with a pain in her stomach, strange people are touching her, 2 days later she awakes with sore legs, and some thing’s holding them down….
A week after surgery still tender and fragile someone starts stretching her legs exactly where it’s hurting.
“Why are they hurting me?”
“I don’t want to do this!”
“Why is my life surrounded by pain?”
It’s not surprising then, that she fears the unexpected. …..
The vicious circle had begun just a week after her operations.
She’s was on tenterhooks for every single noise that surrounded her……
“Which one will bring more pain?”
“Which noises should I fear?”
“Which noises are safe?”
A week after surgery she’s not at all capable of being in a social environment.
They rang from kindy, this is just not working today they said.
We know from previous experience that Jennifer is fragile when she’s not feeling well or when she’s in pain.
It’s hard to interpret at this very moment, there’s the G tube, the adductors and her hips are being stretched back in place.
I pick her up, she barely smiles, the fear in her eyes is more than apparent.
We drive straight to the hospital.
Fearing an infection due to a slight fever we take all the blood tests we can.
Jennifer had Botox after the adductor tenotomy.
We conclude it’s a side effect of that, a flu-like feeling without symptoms.
Odrun and I spend the weekend building up her self-confidence, whilst trying to keep our patience.
Sunday she comes around, better and a touch more confident.
Monday she goes to kindy, Tuesday we return to the hospital to remove her stitches, 2 weeks after the initial surgery.
Everything was much better, she’d put on almost half a kilo in 2 and a half weeks, her legs were naturally spread apart when we took her cast off.
She was laughing and smiling, Jennifer was back.
Odrun and I discussed our experience of Jennifer’s last 2 and a bit weeks.
We were exhausted, the crying was the worst, it’s deafening. ….
The kids were home on Wednesday before easter and we went to the beach, albeit a very cold one.
Couldn’t convince Emma otherwise, she was impatient waiting for summer.
At least we know who she takes after….
Easter Thursday it rained, Emma and Odrun baked buns and cake.
Jennifer had slept through her first night since December.
I went in to her around 8am.
I saw she’d tried to roll her self onto her side during the night.
Her cast is supposed to keep her hips symmetrical.
Her right leg was out of whack.
I took off her cast, changed her and put her in her chair.
She screamed in pain, she was literally trying to get out of the chair.
I leant the chair backwards, I couldn’t put her legs in the chair, she kept her legs together.
I passed it off as discomfort in her legs due to the awkward position I found her in that morning.
I put the hose in her PEG, she flinched.
Hasn’t done that before!??
She drank from her bottle and moaned in pain as I gave her breakfast and her medicines.
The fear in her eyes came back, unable to comprehend what in the hell was going on.
Well that makes two of us Jennifer…..
I sat with her on the couch, she seamed comfortable.
When I moved her she screamed in pain.
I lay her on her side.
She fell asleep.
I repeated the process for lunch, this time she almost passed out from the pain.
We managed to calm her down and then we saw her G-tube was leaking yellow puss.
An infection, in Jennifer’s case a particularly dangerous one as the hose from her Shunt is placed around there.
An infection that could in worst case creep up her shunt tube and into her brain.
7 hours we spent in the emergency department.
Coincidently, meeting the son of the professor who originally diagnosed Jennifer’s AVM.
He looked proud as I chatted to him briefly about his Dad.
As my severely brain damaged daughter Jennifer lay more or less passed out in her pram in the emergency room I wondered if he knew his dad had originally told us nothing was wrong with Jennifer’s brain.
I’ve come to learn, probably much later than everyone else though, that an unintentional mistake is not one worth dwelling on nor blaming anyone for. It serves no purpose to ridicule someone for that!
She puts up with a hell of a lot this kid.
It’s hard not to be proud!
We took ultrasounds of her stomach, to make sure the tube was lying correctly.
Everything was fine, they had no idea how it became infected.
You could not lay the slightest finger on Jennifer’s stomach, she was in total agony.
We stayed 2 nights whilst she had antibiotics through her IV drip.
Easter wasn’t ruined completely, as Jennifer recovered fairly quickly.
Something she has a knack of doing, even if it was just an infection.
Such a small body, such a huge heart!
The pain and the fear affects us all.
There is absolutely nothing worse than seeing your child helpless and in pain, you don’t get used to that.
The fear that something might be terribly wrong, you live with more often than you should.
The few extra grey hairs don’t matter, the lack of sleep doesn’t matter, the telephone calls you’ve ignored or the work piling up when you get back…….
Couldn’t care less!!