Guest Blogs and Featured Spotlights, History, Kerry's Causes, Memoir Monday, Piece of Cake, The Redefining Disability Awareness Challenge

The D Word

Here we are and we’ve arrive at the month of August and more

Redefining Disability awareness Challenge questions.

Last week I got my parent’s side of the diagnosis story and how it all began:

Diagnosis – Piece of Cake!

But I also mentioned, at the very end of the post, that I would be starting to look-back on the part I could remember.

***

Q: How has your life changed as a result of that diagnosis?

A: That diagnosis,

(LCA)

was my life, my normal and my reality. I don’t remember anything different.

So, as for how my life has “changed” – it hasn’t. It’s an ever-changing state of being, of course, but I do the best I can with the life I’ve been given.

That is why I’ve decided to move on with describing the diagnosis of subsequent conditions I can recall. This allows me to get a better sense of what my parents dealt with with me and my brother.

Of course, that was from the perspective of a parent. Every parent just wants to know that their child can and will have a happy and productive life. Once they educated themselves, all there was left was to take the steps they could to give us the best chance at that happiness.

This is why I made out as well as I did for the first several years of my life.

Education and socialization were issues to be faced and I was able to find success in both, to varying degrees.

I visited the eye doctor very rarely, as there was really no need. That may sound strange, but as a child I was healthy and I lived my life, like any other child.

My level of visual impairment was stable.

***

I felt the cool, smooth floor of the lounge/dining hall against my cheek. I don’t recall which camp activity we were engaged in, as to why I was lying on the floor in the first place, but this gave me the perfect opportunity to give into my exhaustion.

Nausea gripped me. I was eventually given some sort of children’s Tylenol.

All down the hall of my particular girl’s cabin I could hear friendly chatter and laughter, lots of fun to be had, but I wasn’t taking part.

I stayed in my room, in my bed, racked with the most painful of stomach cramps. I was away from home and I was afraid.

“Are you feeling sick?” asked an older girl.

“My stomach really hurts,” I replied.

“It’s okay you know,” she said, patting my arm reassuringly. “It’s normal. It’s what happens to girls around your age.”

She was referring to what I had learned about the year before, in health and sex ed. She assumed I was experiencing menstrual cramps.

I wasn’t. I hadn’t gotten my period and wouldn’t, for five more years. This was something else.

A few nights later I woke my roommate up, to the sound of me throwing up, on the carpet between our two single beds. She ran to get help from our cabin’s head counsellor.

I spent the final few days of camp, while the other children were out participating in the many sports and recreational activities, in my bed, in that cabin. They brought me broth and crackers.

This was the summer before my sixth grade year, before I would be diagnosed, before my parents would once more see their child diagnosed with an unwanted and unexpected condition.

My life would be forever changed. I would know what it was like to feel scared, ill, and uncertain of many things. I would suffer through more fatigue, stomach cramps, and general nausea. The diagnosis of kidney disease, to add on to the already present visual impairment would add a level of complexity that none of us were prepared for.

As I look back, that was the summer it all began, but had been going on even earlier, even as I was unaware of any problem.

Twenty years ago seems like such a long time, as I look back in reflection, and yet not. I can say I learned a lot about myself and how to appreciate life, from the age of eleven or twelve, of which I may not have learned otherwise. That, at least, is what being diagnosed with any of these things can offer in the way of positive life lessons.

***

The Facebook page is:

The Redefining Disability Awareness Challenge

For next week’s question:

How has public perception of disability changed in your lifetime?

I have been reading up on this issue lately and will be back to answer with my thoughts, next time.

Standard
Blogging, Guest Blogs and Featured Spotlights, History, Interviews, Kerry's Causes, Memoir Monday, Piece of Cake, The Redefining Disability Awareness Challenge

Diagnosis – Piece of Cake!

It’s a little over a year now since the launch of:

The Redefining Disability Awareness Challenge,

on Rose’s blog.

I would find it not long after and make the decision to join in here.

One year later and another summer has arrived. I have been skipping some Memoir Monday posts, a summer break of sorts, but I am nowhere near out of things to say on the subject of disability awareness.

***

Q: At what age were you or your loved ones diagnosed?

A: This question, I thought, would be better answered by those who remember what it was like at the time. I was only an infant after all.

🙂

I asked my parents to relay the events of those early days. This is what they said:

Diagnosis for you was kind of gradual. First, I thought things weren’t quite right when you were between 2-3 months because you didn’t follow with your eyes like most kids. The family doctor didn’t notice anything until I pointed it out at the end of your 3 month checkup.

It took a week to be sent to an eye doctor and he realized it was serious but didn’t diagnose anything and sent us to a Pediatric Ophthalmologist.

Dr Orton said that he thought it was Leber’s and said that you were visually impaired but he never said the word blind. We waited until you were 8 months old before they put you under anesthetic and gave us a positive diagnosis.

It was always upsetting when we were dealing with doctors, but as a young baby there were few differences.

CPRI

was involved because of a suggestion from other parents of a blind child by the time you were 8 months old and therefore your development was never really delayed. They were very helpful with lots of suggestions.

So first we just didn’t really know a lot of details and were a little in the dark. It was kind of a wait and see.

With your brother, we asked Dr. Orton about him on one of your visits and he wouldn’t even look into his eyes (2 weeks of age). He said that he had to be older before he could tell us. We knew he was blind by our own experience by the time he was 6-8 weeks old. I don’t know if it is better to learn gradually or be told everything up front.

***

These things couldn’t have been easy on them, but the life I’ve had since being diagnosed is proof of how well they adjusted and thrived as our parents. I owe them everything.

This is where I say that, up until now, I have used the RDAC to write about blindness as a disability I have lived with, through the good and the bad times, but there would be more diagnosed, and this year marks twenty years since the second round of diagnosis would begin.

Going forward, I will be starting a new topic on this blog: Piece of Cake.

This will focus on the kidney disease, that would be added to my diagnosed syndrome.

I have wanted to write a memoir for many years about this time. I had the name picked out from that first day I sat at my brailler and started writing.

In the months and years to come, I will be looking back on these turbulent events, through the power of words.

Next week:

How has your life changed as a result of that diagnosis?

Redefining Disability – Facebook

Come check things out over there.

Standard