Today I want to tell some stories of my own medical trauma, to help those of you who haven't experienced this to start to wrap your head around what medical trauma might look and feel like and how that might impact someone, and to help break the silence for those who have experienced medical trauma as a patient or caregiver.
As humans of the 21st century we have got it into our heads that we can know all the things. That we can predict all the weather.That we can heal all the diseases. That we can guarantee that we will not only have food to eat, but that we can have exactly the right food to eat at this moment whenever we feel like it.
That since we can put people into space and go to the moon and launch rockets that can destroy cities in moments and have a face-to-face conversation with someone 10,000 km away from us that surely we can be certain about what is wrong with us.
Except that sometimes, even today, we can't.
I've thought a lot over the years about why it took so long for us to realize that we were a family on the spectrum, and here are at least a few of those reasons. In our family, autism is the norm. That's true not only in our immediate family, but among a lot of… Continue reading When It Runs In The Family
I'm reposting the Atypical Autism Traits in their entirety from the post I found on Tumblr to make it easier for me to reference them in future.
The traits are split into four categories.
I want to spent this week talking a little bit about our autism journey.
It wasn't until the spring of 2013 that we my youngest was flagged for autism.
It really should have happened years earlier - by that point she was nine, her older sibling was 12 and her dad was 36.
Why does it matter what ages the other two were?
Because within two years, we had come to realize that both of them were also on the spectrum.
Whenever there is warfare, there is collateral damage. Innocent civilians die. Historic landmarks are obliterated. Food scarcity, people movements and disrupted social orders can all be expected.
I've now been sick for a year, and although there has definitely been some collateral damage - loss of income, loss of mobility, loss of opportunities - I've realized there's also been some collateral beauty because of what's happened.
So here's some of the good things that I've learned in the last year:
Today is Infant Loss and Awareness Day - and the 15th one I've observed as a mother who lost her child.
The little boy at the top of this screen is my son.
He was born the day before my 23rd birthday - the second of my three children - fifteen years ago this past August.
He was beautiful and a fighter and had these intense 'old eyes' that felt like they could see into the depths of your soul.
But he also had Trisomy 18 - a chromosomal abnormality similar to Down's Syndrome that causes each and every cell to end up with too much genetic information. In Jeremiah's case - and in the case of the 1:3000 live births with Trisomy 18 - this meant that Jeremiah's chances of reaching his first birthday alive were less than 10%.
So I slurped up every ounce of my baby, knowing that his time was limited, but with no knowledge of exactly how long we had.
Until one day I knew.