Welcome to Day 5 of the 31 Days of Random Reflections on Raising and Homeschooling a Child with Special Needs. You can find the main page for this series here.
When my son was diagnosed with a chromosomal disorder, I scoured the internet frantically. I found the information I was seeking, but I also found great sadness. I read for about 5 days, until I slammed the door shut on the research.
I was not going to base my son’s life on some unknown children living in diverse areas of the world under completely different circumstances.
Instead, I decided to take it one day at a time. One tiny minute at a time.
I chose to look at my son right where he was. He never fit neatly into the milestone charts, but he fit perfectly within my heart.
He was and is a human being first. Not a statistic. Not some faceless number on a report filled with percentages and acronyms.
I was doing really well enjoying my child as my child, thank-you-very-much.
That is, until we had to deal with professionals who forced me to revisit reports.
Opening up a can of worms
About 3 years ago, we found ourselves needing to fight for our son’s right to public services. I needed to provide evidence regarding details of his diagnosis in order to gain any traction with this case.
That meant I needed to research.
And, to dig deep.
Not just in the papers, but within my being. I didn’t realize that I wasn’t prepared to go there.
In reading about the diagnosis all over again, I had to face the facts head-on.
I found so much of my son in those words that weren’t evident when I first read the documents at the time of his birth.
You see, when I shut that proverbial door on science, I also shut the door to a part of who my son is. While wanting to see him as his own independent spirit, I also denied his genetic make-up that explains a lot of what he does and why he does it. In essence, I had been denying him to shine in who he fully was and is.
That got me thinking.
Revelations about where we are on our journey
When we’re given a diagnosis such as a mental illness, a heart condition, or a chronic disease, we tend to want to do as I did: look on the bright side. We want to ignore the stats and find the best positive solution to move past it.
Everyone encourages us to count our blessings. To keep our chin up.
We take medication, or undergo surgery, or seek professional guidance to help us move beyond it. Move past it. Put it behind us as quickly as we can.
But, for how long can we ignore the truth behind a diagnosis before we deny a piece of ourselves?
For how long can we pretend that it doesn’t exist?
Where is that fine line between having a diagnosis define who we are and denying that it has any impact on us at all?
How do we face the truth, accept it, and move through it?
In asking myself these questions, I have come to understand that I can run from the papers and the facts, but I will never fully heal. Heck, I thought I had healed. But, my reaction to opening up that medical binder proved to me that I wasn’t even close.
Until I did, I knew that I was not honoring my son.
I needed to face the truth.
I needed to accept it.
I needed to move through it to get past it to heal.
In opening up that can of worms, I realized it’s going to get ugly each and every time I deal with professionals who force me to see the reality of my son’s diagnosis. Each time we have a new questionnaire to fill out. Each time there’s a new assessment. Each time there’s a new report. The reality will sit there in black and white.
And, it will sting each and every time.
Yet, each time, I am also forced to see and accept more of who I am and where I am on this journey.