Which truths are we charged with sharing, and which truths must remain more quiet for the sake of the greater picture or, more importantly, one’s privacy?
I was chatting with a friend today – someone I’ve “met” through my autism writing, who also writes extensively on autism, on life with her autistic son, on neurodiversity and other disability topics. I was telling her how difficult it is to lay one’s life bare and share intimate truths, day after day for 30 days.
More so, what is difficult in determining what to share? What truths do you need to know? What truths do I wish I could share with you, but I just cannot? What truths incessantly pop up in our life and in my head, but I tamp them down a bit so as to balance out the challenges with the positives in this autism living?
What truths do I think D would be ok with me sharing? That’s a hard one. I feel like I’ll never really know the answer to that one until we are both standing in front of God, and he says everything he has ever wanted to say to me.
In our chatting back and forth, my friend said to me (paraphrased): I cannot write about some parts of our autism journey. It’s just enough sometimes to live this life and wake up the next day and keep going.
To which I replied (paraphrased): And truthfully, being honest but not being a downer is hard. It’s so, so challenging for D. Balancing the positivity while being real about what goes on in our lives, and not insulting to or speaking for those living autism is walking a tightrope. The thing is, I do not want to wash over [what is so hard.] But at the same time I don’t want that to be what I’m (and my readers) are left with. AND there’s D’s privacy that must be considered. But still, the head-banging, self-injury and other things – it shapes our family reality too.
Figuring out all that in writing and sharing is always hard.
Here’s what I want to focus on – the moments when there is such clarity between D and I, or when I pull into the driveway from running errands, and I see my husband sitting in the backyard looking with such love at D, who is happily jumping in the trampoline. Or when eight-year-old H is sitting down to do homework, and D comes over – towering over him – and wraps his arms around his shoulders and pulls H to the couch to play.Or, when we all sit down to dinner and D acquiesces to sit with us. A is right next to him and she turns to him and says, Hello my friend! Did you have a good day at school?
To which he answers, Ya! And then they engage in a hand-slapping game.
That is what I’d only like to remember and focus on.
But there is so much more – marital challenges (which I will probably never write about), puberty issues (another thing I’ll probably never write about), illnesses, hospitalizations, the mad juggling act. Times of such utter heartbreak and despair that I felt I was losing my mind and D at the same time. Sleepless nights, incessant research and search for specialists, searching for answers. The cringe and sinking feeling in my heart when I hear a loud thud in D’s room, and I know what has transpired.
Running my fingers over the scars on D’s face, scars that he picks at over and over. Scrambling to find more support and care givers to help us hold this joyful yet fragile life that we piece together with gossamer strings and scotch tape. The never ending worrying about D’s future. The perpetual guilt of have we done enough? Are we doing right by him? Are we doing right by A and H? And safety.
It’s all part of our family truths. Some of which will never see the light of day in this blog, because there are things that must remain private. And, there are things that just cannot be conveyed or understood, as much as I want them to be.
They can only be lived.
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