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