JustWrite

Tonight, while searching for potential bloggers for my virtual book tours, I stumbled across this extremely controversial story. In a nutshell:

Nine-year-old Ashley is severely physically and mentally disabled. Three years ago, Ashley’s parents made the highly unusual decision to keep their daughter child-sized when they observed early signs of puberty.

The young girl has undergone hormone treatment that will limit her growth, which will keep her at about four feet, five inches, and 75 pounds making it easier for her to be moved. She has also had a hysterectomy and a breast bud removal.

“Ashley has no need for her uterus since she will not be bearing children,” they say, adding that the decision means she will not experience menstrual cramps.

The decision to remove her breast buds was partly to avoid sexualizing Ashley in the eyes of her caregiver, but mainly so that she would not experience discomfort when lying down.

Ashley also underwent an appendectomy during her surgery, as she would not be able to communicate pain if she were to suffer from appendicitis, they said.

Partly quoted from CTV.ca

For hours, I have been reading the parents’ blog and discussions, for and against, on other blogs. Mixed thoughts and emotions are running through me at the moment. I am somewhat reluctant to comment publicly on such a heated topic without fully absorbing and contemplating the issues involved. I can appreciate the parents’ perspective and that caring for their daughter on a daily basis is difficult and exhausting. No doubt, the lack of means of communication is one of their biggest challenges as their child cannot indicate her needs or where she hurts. But, as a person with a disability, a woman with a significant physical disability, I find “Ashley’s Treatment” terrifying and saddening; in fact, I felt nauseous as I was reading and I was beyond tears.

So many questions come to mind: is the only way to protect her from sexual abuse is to de-feminize her? How far will the removal of body parts go to prevent possible disease in the future? Will this become society’s solve for managing the care of its severely disabled citizens? Why aren’t desperately needed support systems being providing so that parents with special needs kids don’t feel the need to do it all alone? If it takes a community to raise a child, where is the community for the child with a disability?

Time to go crawl into bed, although I’m not sure how well I will sleep after such a story. Once again, I’m thankful for the parents I have.

Tags: ashley treatment

In September Darrell and I went on our first holiday in seven years. We went on a 6-night cruise n stay: a 3-night cruise from Vancouver down to Los Angeles and then 3 nights in Anaheim. We had a super fantastic time! Here are a few highlights:

The Island Princess – our home for 3 nights

Facts about the Island Princess:

• Length 964 feet
• Width 106 feet
• 88,000 gross tonnage
• 24 knots cruise speed
• Passenger capacity 1970
• Crew members 900

Before Darrell and I embark the floating hotel

As this was our first cruise, we weren’t quite sure what to expect. Some learning was definitely required! Now the next cruise will be piece of cake.

Sunset from the library window

Once we were able to get into our stateroom, which is a whole other story, we found it to be surprisingly accessible with features like light switches and an electric outlet (for plugging in wheelchair battery chargers) right by the bed. What a concept!

There was enough space for both wheelchairs, which is always a concern when we travel. The room may be accessible, but is it large enough for TWO wheelchairs?

Another major concern when traveling with wheelchairs: is the washroom accessible? This one was excellent.

The shower with a fold down bench

Enjoying the sun deck

This was shortly before seasickness hit. Seasickness with minimal balance (due to our cp) is not a good combination! We now know to take medication with us – part of that learning curve!

Water, water everywhere!

Our first view of land in three days

Thursday morning we docked in San Pedro (outside of Los Angeles) and then transferred to the Clarion Hotel in Anaheim. The room was huge! Definitely large enough for both of us. The shower was questionable, but we managed – once!

That afternoon we headed to the Crystal Cathedral, the home of the television program “Hour of Power”, which I watch most Sunday mornings to recharge my positive attitude.

The Welcoming Center by architect Richard Meier.
Scanned postcard

The Welcoming Center was our first stop to find my brick.

The Wall of Dreamers of Great Dreams is wall of glass bricks with individuals’ names and the slogan “If You Can Dream It, You Can Do It!”

When the bricks first went on sale, I thought I would much rather be memorialized in positive place like that than on a grey tombstone in some dreary cemetery somewhere. That was my first purchase with my first-ever credit card

My name IS there, trust me!

Finding my name was a little tricky as my brick is somewhat below the walkway. But I found it! I am in square D6, and then brick C29. Seeing my name inscribed on the wall in such a beautiful place, forever, was actually quite emotional. There were a few tears. (The fact that I just coming down with a cold and felt lousy didn’t help.)

“The Bronze Eagle” by Michael Maiden

but those who hope in the Lord

will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.

~ Isaiah 40:31

It’s a Small World

Friday and Saturday we spent at Disneyland. It was my first time and it was fantastic. So much to do and to see. My first ride was Dumbo, which was the first amusement ride I had been on since I was a kid, so that was quite an adrenaline rush!

Next Darrell and I went through It’s a Small World. There was a boat Darrell could drive onto with his wheelchair, and the staff helped me climb onto it. Getting off was tricky as I didn’t have enough leg strength to stand up, over and down, but the challenge was mastered with some help.

Networking with the finest

…and with Pluto!

California Adventure Park

I went on that!

I was amazed at how many of the rides Darrell and I could get on to. Of course, we didn’t see and do everything we would have liked. I don’t think that is possible in two days! Now we have an excuse to go back to the happiest place on earth. It was great being able to be kids again!

The Crystal Cathedral and Bell Tower

Before flying home Sunday, we went to the church service at the Crystal Cathedral.

Inside the Crystal Cathedral

Experiencing the service live was so different from simply watching it on tv, yet I felt so comfortable. And being inside that church didn’t feel like it was isolating me from the outside world. I could still see the blue sky, birds flying and the swaying palm trees. The place is so inspiring. I left realizing that I need a bigger dream. I don’t know yet what the dream is, but I do know my book is only the first stage, not the final stage. I am sure the next stage will make itself known to me when the time is right.

Mommy, you can’t leave again!

My kitty Faith was happy to see me when we arrived home late Sunday night. She didn’t leave me alone all week. Unfortunately, I had to go out-of-town overnight Friday for a meeting. Darrell said she cried until 3am. She is such a Mommy’s baby, and Mommy doesn’t mind!

I have been watching the Last Comic Standing for a few weeks, since someone mentioned in an email that one comic Josh Blue has cerebral palsy. One joke from his last week’s set particularly hit my funny bone. He recalled an incidence in which a lady had come up to him, I guess after watching his unsteady cp in action, and says in a slow, condescending voice, “Hi buddy, how are you?” Josh responded, “I need to get laid!”, totally shocking this older woman. Ahh, nothing like blowing the myth “No sex, please. We’re disabled.”

It reminded me of the time, shortly after Darrell and I moved in together, that an occupational therapist (OT) was sent in to provide expert advice on our shower arrangement. The previous tenant had an attendant and had a roll-in shower installed. We simply put my shower bench against one wall, tied two large grey cement bricks to it to anchor it down because Darrell was worried it would tip over, and the maintenance guy installed a grab bar. Theoretically we would park our chair beside the bench, move our butts over, pull the curtain, and.…viola. Simple. As there were still boxes and parents everywhere, we had yet to put it to the test.

However, the Long-Term Care case manager felt that wasn’t safe and insisted that an OT come check it out. We were about to be married; we could make that decision for ourselves. Yet we weren’t capable enough to determine for ourselves if the shower was safe to use? I mean, I have bounced my head off cement floors enough times. I would definitely not put myself at risk needlessly.

Anyway, an OT came to inspect our shower. We all traipsed into the bathroom – felt like we should start charging admission! Her initial response to our arrangement was, “Don’t know why I’m here. Looks like you have solved your own problem.” Well, duh! Besides, I don’t recall having a problem! Her only suggestion was that suction-cup feet on the legs might hold the bench a bit firmer. She said she would get some. We are still waiting, eight years later! And people think we are slow!

Back in the living room, she flipped through a few catalogs to see what other options existed. “Here’s another option,“ she said as she passed the catalog over to us. Basically, it was a shelf that fastened to the wall – fine if you had a skinny butt. I took one look and, in my Glenda-ish, blurted out, “It won’t hold two people!“ Gasping in utter shock, she exclaimed, “Oh! I hadn’t thought of that! You make me blush!“ All flustered, this gray-haired lady gathered up her things, saying, “I see I’m not needed here.“ She quickly departed, never to be heard from again.

This red-head’s wicked sense of humour strike’s again! I love when I can totally blow people’s minds! That is when having cp can be fun, in devlish kind of way!

Tags: Last Comic Standing/, Josh Blue, Sex, cerebral palsy, humour

Last Wednesday I met a girlfriend for lunch, which was a welcomed change from interacting with my virtually imaginary friends! (Thanks Meike!) Afterwards, she went back to work and I wandered around the mall for a couple hours.

I went into the Body Shop® and splurged on the new Cassis Rose shower gel. After the month I’ve had, I figured it was time something came up smelling like roses! As I paid with my Interac card, I realized how different that was from those days I used to fumble with real money.

Thankfully this Interac device was removable from its stand and I could hold it on my lap; otherwise I need to wiggle in my chair until I can reach and use the thing. Grabbing the coiled cord in my bad hand so that the device didn’t boing back to the cash register before I was done, I steadied my left hand against my boob – at least it’s good for something – to type in my magic number. Then I held my breath, hoping I had hit the right numbers. I had a feeling I hadn’t this time, but was hoping that the device knew which four keys I had intended to hit. Unfortunately these devices do not have artificial intelligence, yet. I had to try again, and again I held my breath until the message “Approved - obtain your card” appeared. Deep sigh of relief. I felt like I had just won the jackpot, except it was my money! Yippee, my prize is my purchase! Yep, way easier then fumbling with real money…

Tags: cerebral palsy, technology, money, Interac