Wednesday, April 30, 2014

Retro thunkins - the list grows

As a parent of a child with Cerebral Palsy you discover you have a list. A list of people that you will one day realize you need to invent/build and use a time machine on to travel back in time and "thunk" then soundly on the head for the stuff they did.

While I am not the birth mother of KSS I was there for most all of her appointments and doc visits, so I got to witness a lot of crap. As her protector and advocate I feel I have the right to dole out some thunkins.

When KSS was 3 years old she went to an  intake evaluation for Occupation Therapy. That day was the trifecta of crass people and will be my first stop on my retro-thunkin tour.

A well dressed man approached us and asked KSS's mother, "I'm doing a research project on CP, Did you use crank during your pregnancy?"

THUNK. Dude you get that thunk right between the eyes for your question. Research or not that was uncalled for.

Next the technician handed my 3 year old scissors and a sheet of paper and asked her to cut a line.

KSS picked up the scissors and looked at them.

The tech made a smurky comment that hinted that KSS must be mentally retarded because she didn't know what to do.

At this point I had had enough and stepped in and spoke up. "She's THREE! She has never seen scissors let alone cut anything with them!"

I took the scissors and snipped the paper and then helped KSS to do it. Then I laid both the paper and scissors back on the table and asked KSS to cut the paper again.

Which she tried to do.

The tech eyeballed her and made a clicking sound with her lips and marked her paper with a heavy stroke.


No wait, I just remembered one small detail of that event. Those weren't kid scissors they were big ones.

Lady, you get and extra THUNKIN for that!

The next boob that came in to eval her, was firing off a slew of questions then not waiting for her to answer. She kept looking to Mother, Grandma and me as if saying "OMG your kids a turnip." with her eyes.


As we left that appointment I said, "I can't wait to get home so I can shower, they left me feeling icky, bleah..."

Grandma nodded and said "I should go back in there and say something, that was rude."

But even with all that I feel there is one person in particular that is more deserving of a retro thinkin.

He was the orthopedic surgeon who straightened her left leg. Initially the surgeon planned to straighten both her legs. But at the last min they only did one.

After it was all over and they were doing a gait re-check he watched her walk down and back and he turned to us.

"That turned out beautiful. We should have done both legs."

Being at the mercy of the doctors and their decisions about KSS and her treatment plan. It never occurred to us to press further and ask to have the other one done. We just assumed they knew what there were doing.

Well, guess what. I got a call two months ago from KSS. Its now been ~20 years since that day. The leg they didn't operate on is now deteriorated to a point of needing surgery. A life time of walking on her crooked leg has stressed the ankle  and deteriorated the joint.

The other one they straighten is fine. She is facing complex orthopedic surgery to try to salvage her foot and ability to walk.

We never looked this far into the future. We didn't have the knowledge or experience to see this coming. As young parents of a CP child, we were only concerned with the right here and now. It never occurred to us to say, "hey doc, how is this going to affect her ankle stability in 20 years?"

We fought so hard to help her to walk. That was the focus. Now she is facing that again.

So a mighty THUNK to her surgeon. "Yeah dude, why DIDN'T you do both legs?....and more to it lets DO IT, schedule the surgery so twenty years from now my child will not have to suffer from this wishy-washy-ness"

And why oh why was there not a course for parents on the future possible complications that can arise from the diagnosis of CP?

You know after learning all this info about childhood CP and the general working of Shiners hospital the hard way, I often thought if I had the time I would set up a program to help inexperienced parents navigate this stuff in the early days. To have a support person to go with them to the intake eval at the hospital who understand what it feels like to be wearing those shoes of uncertainty.

I remember when KSS was a teenager she happened to meet a woman with CP at a restaurant. The two started talking and it was fascinating to hear the questions KSS asked her. Questions we would never be able to answer about living with CP.

The one that surprised me was the first one out of her mouth. KSS asked her, "Does everything smell really intense to you?"

I thought, what an odd question.

Then the lady's eyes lit up and she said "YES! everyone tells me I am being oversensitive to small smells but to me they are very intense!"

Which answered a lot of questions about what I perceived as odd behaviors in KSS as a child. Which also means I too deserve a...


For the time she was smelling each and every rose at the park, and I told her. "KSS they all smell the same! lets go!"

I would have never guessed that while CP is by definition brain damage, that it might have also enhanced the brain in areas no one ever looked at.

Oh wait I just remembered another person deserving of a retro thunkin.

The boob who cut off her thigh high cast. The instant the cast saw touched the cast KSS freaked the hell out and started screaming in pain.

They stopped the saw and told her. "It doesn't' hurt. Now hold real still."

She continued to scream as they cut the cast down her leg.

The tech kept repeating loudly between her screams "It doesn't hurt!"

When they finished and cracked the cast back, fresh blood filled up the cast.


The exposed pins in her ankle were casted into the cast. As in each time the saw jiggled the cast, it jiggled the pins that went though her ankle into her bones.


THUNK!!!! oh stop your whining that doesn't hurt! THUNK!!!! THUNK!!!! THUNK!!!! THUNK!!!! THUNK!!!! THUNK!!!!

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