Just help me be full of energy please

I have been feeling increasingly tired I had anesthesia on February 3rd.

No one is able to explain why this is happening.

My liver is not working properly.  I have a disease called Alpha-1 Antitrypsin Deficiency (causing liver cirrhosis, portal hypertension, and an enlarged spleen) plus I have methylation issues as part of medical factors attributed to autism.

Having pain in my stomach last Tuesday had us go to emergency at the Hospital for Sick Children in Toronto.  After ruling out the logical explanation for my symptoms, we were admitted and the search for answers began.  No good explanation was found by my team of doctors.  They were very thorough, interested in all I had to say to help them, and nice.  However, sent me home with all normal (for me) test results.

We will follow up with my regular liver doctor next week.

Not having answers or a plan sucks.  I just want my energy back.  In the meantime, I am budgeting my energy so I can accomplish things in my day and relying a lot on my impulsive calming stims to take care of myself.

Jordyn

My girlfriend

I asked my friend Evie if I could call her my girlfriend last night.  She said yes.

I love how full of love and joy she is, and pretty too.

We talk once a week over Skype.  She lives in Australia.

My mom and her mom help us to speak with each other with your letterboards.

I am happy.  I want to be loved and to love.  We share stuff we only feel comfortable sharing with each other.

Jordyn

So I am a documentary film star

Last night I was at The Spiral Movement Center where the first Bodymind Film Festival took place.  A documentary starring me was screened.  “Jordyn’s Rocky Journey” is a nice film that captures me beautifully.

Boarding it were a film on a boy named Aidan who has cerebral palsy and one that shares Andrew’s and Michelle’s bodymind experiences.  My calm body was able to be during Aidan’s and my films and round table questions, but I could no longer control it when my piece was over.  I had to burn off steam in the hallway and stairwell.

Andrew’s film I will watch at home.

All were so absolutely awe inspiring.

My film really creates a beautiful picture of both my daily battles with my uncontrollable body (Rocky) and my inner self (Jordyn).  Stephanie and Yuji kept both distinct and that helps others to see the disconnect between me and my body.

Although I am gaining more control each day, this film is important for people like me to gain understanding from teachers, therapists and family so that they too can begin to bring their mind and body together.

I request that you share this film (“Jordyn’s Rocky Journey”) far and wide so it can lead people to all the support I offer.

Yours,

Jordyn

 

 

I always want to love people

I am very angelic in nature.  I understand that is hard for some to believe.

My way of communicating, is sometimes based in my body, occurring like aggression to the observer.  I can’t control how my body expresses feelings.

Internally I am calm and happy, but on the outside I am totally smushing my mommy’s face and grunting evilly and pinching her.

I gain more control each day, however there are many outside forces that affect my body.  Listing them would be futile as they change in effect often.  For example, the new moon can make my body feverish, but this last new moon I was fine.  Pinning down cause and effect is nearly impossible.

My mommy is constantly on a search for things that could make my body into a 100% love machine.  My footbath, magnetic mat, Chiropractic appointments, Osteopath appointments, Anat Baniel Method lessons, Spiral Movement classes, HANDLE activities, diet, and yoga all help me with being a more calm and dearly nice body on the outside.

I strive to have my outer appearance match the cool and calm interior, so everyone can experience my love.

Your support and calm energy are always welcomed.

Happily,

Jordyn

Vacations ROCK when you spend time with friends

We spent a week outside San Diego.  I loved every moment.  My best vacation ever.  Only thing to make it better would have been more time.

My ten most memorable moments are:

10.  Calmly flying without need for iPad.
9.  2 afternoons observing Elizabeth Vosseller work with my friends.
8.  Walking to dog park with Daddy, and having no fear of pool of pooches.
7.  Eating out with 3 100% true friends.
6.  Hanging out with friends at hotel pool.
5.  Making a poem with 2 100% amazing guys.
4.  Taco night with all our friends.
3.  Making my own 45% better climb at Rock Fitness with Kate.
2.  Crystal shopping with truest friends.
1.  Time with friends at the Sylvester’s house.

The best thing about this vacation was no rude people staring or commenting, only celebration 100% of time.

You don’t know how nice it is to be in an environment of non-judgement and 100% love for someone like me.  I love 100% everyone and while I understand people’s rude stares and comments as their discomfort, I wish people could get over themselves in the name of acceptance of all versions of 100% human beings.

So when you see a version of human being different from you, just remember they are the same as you.  They may look or believe differently, but inside they just want acceptance and connection like you.

Imagine what the world would be like if we all came together as one.

In love,

Jordyn