Part 8 Understanding

I was very excited about today. I had no idea where I was going but I just have a feeling that I would have fun.

We decided that he would pick me up around six because he said he would love to watch the sunrise with me. I wore layers and layers of clothes on me because the weatherman said it would be very cold today. If he lied just know that I would be finding him to give him a piece of my mind.

I wore boring colours below like black and grey. Over them, I wore fall colours like orange and brown. I placed my big heavy white coat over me and checked the time. It was currently 5:30 so I had some time to spare. I decided to write:

Oh how I love fall
The beautiful colours painted on earth's walls
Falling can be beautiful

***************

Today I'm deciding to take a chance
To leave all my fears behind
To go dancing with a man
To hopefully be held in his hands

I want to live on the edge
Jump off a bridge to conquer my fears
It is my pledge
To be fierce

*************
I cried
When I thought I was losing you
I didn't realize how much I loved you
Not until I cried

My heart stopped beating for a while
When I thought you loved someone else
I didn't know how much of my heart you owned
Until it stopped beating for a while

I got weak
I was ready to give up
But not until I fought for you
I would never be willing to let you go

**********************

I heard a knock on the door and suddenly it felt like my stomach wasn't mine. It was like a circus was inside with all the flips and dips it was doing.

I was nervous this was new territory for me. I never went out with anyone other than my family and friends. Most times people wouldn't even want to meet me. They usually think that I'm a burden because of all the work they would need to do.

I opened the door slowly like those scenes in horror movies where you are not too sure if it's a good idea to open the door. Yes just like that. I had to lift my head high because I was only 3 inches on my knees and he was a giant.

Wouldn't this look very weird it's like a pixie and a giant going out. Weird, right?

"Hi," I said nervously.

Damn, he is fine.

"Hi, may I come in?"

I just stood there staring at him. Is this a good idea? I'm playing out the scenes of any criminal movie. I would think watching them would teach me not to do silly stuff like these but nope here I am. The thing is if he murders me my sister wouldn't even know how to describe him because she isn't home yet. Damn, I'm screwed, totally screwed.

"Umm sure as long as it's not to murder me" I watched him intently.

"You're serious Huh," he said chuckling.

"Of course I'm serious, what do you think I just go around talking about murder for fun?" I gave home a wide smile.

"Of course not" he returned the smile.

"Anyways come in and just so you know you'll have to raise me and I'll need to explain how because I did the surgery so you can't lift me from below my arms" I

"Okay sure just let me know and I'll be more than glad to follow your instructions"

"Can I take a picture of you to send to my sister? You know in case you do try to murder me. She needs to know who she's describing to the police"

Sven burst out laughing. He was laughing so hard that his knees got weak.

"Okay sure thing" he answered in between his laughter.

He posed and I snapped the picture sending it to my sister immediately.

"One thing I know I like about you already is your sense of humour and the fact that you aren't even trying to be funny. You are serious but to me, it's so funny"

"Why thank you, Mister Sven. I'm glad you're enjoying my pain"

"Okay so now teach me how I should lift you"

"Yes, I almost forgot so do you know how a baby is lifted from the back? You need to lift me like that. One hand around my back and the next below my legs. You can also lift me from below my bottom. As long as you lift me from below my arms. Did you understand?"

"Yes I got this"

************************************
Inside the car at first, it was awkward then we started making small conversation. All of a sudden we hit a hard topic.

"So can you like tell me a little bit about your disability?" He asked.

"Sometimes I wonder why I was born like this. I mean some people that have a disability have caused but mine doesn't.

My condition Arthrogryposis also called arthrogryposis multiplex congenita (AMC), is a term used to describe a variety of conditions involving multiple joint contractures (or stiffness). A contracture is a condition where the range of motion of a joint is limited. It may be unable to fully or partially extend or bend.

The cause is unknown, although arthrogryposis is thought to be related to inadequate room in utero and low amniotic fluid. The patient may have an underlying neurological condition or connective tissue disorder.

Symptoms in patients with arthrogryposis can vary greatly. In most cases, both the arms and legs are involved.

Muscle contractures of joints commonly take place in the wrist, hand, elbow and shoulder on either side of the body. Lower extremity involvement is also common involving the hips, knees and ankles. There is also muscle weakness throughout the body. Spine curvature may develop in some patients.

Occupational and physical therapy is the initial line of treatment to improve the range of motion. Occupational therapists typically work on the upper extremities while physical therapists focus more on the lower extremities and gait. Aquatic therapy may also be recommended as an additional method to provide strengthening and range of motion exercises.

Exercises used to be given to my mom to perform on me. She would start and then stop so eventually I never got better.

Surgery can also be done. orthopaedic surgery to improve range of motion. Improved range of motion will help children with independent feeding, hygiene and other upper extremities physical activity.

There are also orthopaedic surgical procedures to help with lower extremity contractures in the knees and hips. These corrective surgeries can also provide improved range of motion and improved ability to bear weight and walk.

In children with severe spine curvature, bracing or orthopaedic surgery may be recommended to correct the spine deformity. This depends on many factors, such as the age of the child as well as location, degree and flexibility of the curve.

Physical therapy and splinting/bracing will likely be recommended after surgery to maintain the correction from the surgery.

I need surgery on my back last year and also started physical therapy but after a while, my dad didn't want to pay for it so he took me out. You know I am still hurt by that.

I often wonder if I and my mom had the knowledge I know now about my disability. Would I be walking right now? Would I be living a better life? Because the more I learn the more I realize I could be having a different life. One where I wouldn't have to depend so much on everyone else. That's the part I hate the most.

I'm sorry I didn't mean to get so emotional and I know I sounded like Wikipedia earlier but that comes from practice" I gave a half laugh at the end.

"It's okay. It's good that you explaining and releasing all that emotions. This shouldn't be something you have to keep inside. It's great that you're expressing yourself. I'm happy to be that listening ear" he said very thoughtfully.

"Your so sweet I'm wondering if I'm dreaming" I smiled.

"We're here," he said while laughing.

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