6 nights ago when we were getting ready to ring in the New Year with our dearest friends, I brought up an idea I had heard on Gretchen Rubin’s “Happier” podcast (anyone who knows me well, or has followed the blog in the past, knows my fondness of Gretchen Rubin, and of mostly all things that involve growth & self development). As we spent minute after exasperating minute searching YouTube for a countdown that actually matched up with our time zone, I figured we needed something to chat about, lest we all start nodding off and miss the entire event 😉 Gretchen’s suggestion was to come up with a word for 2019: 1 word that encapsulates what your focus for this new year with it’s clean slate is going to be. Now now, no need to sigh heavily or roll your eyes, it’s not meant to be a cliched resolution (though those are great as well, if that’s your kind of thing!), it’s meant to help us set our intentions for the year, and in a world that is so very full of stuff & distractions, hopefully it will help us to keep what is most important to us in the forefront of things.
I posed the question to my 2 friends…not to my hubby Scott, because he was already snoring next to us on the couch, ha!!….and let them think on it while I began to share what my word might be. I told them that my word this year will be “acceptance”. I want to accept all sorts of things in my life, rather than fighting against them, or feeling blue because of them. I would like to accept that my body is permanently changed, and not just in appearance, but in the way it functions internally. I want to accept that I am not all of the things I had one day hoped to be (such as easygoing, ha!! That ship has totally sailed!) But most of all, I want to be able to accept that Evrett’s brain is unique. I want to be able to accept that his neurological function is different from ours. I want to be able to accept that things will always be different than what we as young parents had once pictured.
My friend, let’s call him “P”, gave a slight nod, with a look in his eyes that let me know that he thought this quite a lofty goal. “I don’t know if I’ll always be able to do it…(I giggled)…but that’s what I’m going for.”
Well “P”, this would be one of those days where I can’t seem to do it.
The 24 hour flu ripped through our entire household; it started with Cody, then Evy, Lydia next, myself yesterday, and hubby’s turn was finally today. As he rested in bed, and Lydia took her afternoon nap, the boys and I retired to the basement to play and get a few things in order. I knew that I had literally hundreds of printed photos that still needed to be put in to the family album from 1 whole year ago….(Note to self: from now on, use Shutterfly to order pre-made photo albums with captions already inserted. STOP messing around with this printing crap, then organizing & finally having to insert them all…because you clearly detest doing it!)…and I was pumped when Cody said he wanted to help. “Great!!”, I thought, “that should make this nagging task go much quicker!” We got right to it–I sorted, and Cody inserted them all in, one by one until the album was full. In fact, it was quite a lovely way to spend our time together today, we reminisced over happy memories (ones he doesn’t even remember, but still loved hearing all about) and the trip down memory lane was heartwarming.
But it wasn’t all sunshine and rainbows.
We got to the section of photos where Evy was still just an infant, under 1 year of age. I felt my heart start to get all warm & tingly looking at newborn pictures (no, no more babies for us, that shop is CLOSED), shed a few happy tears as we watched him grow bigger & bigger…and then the tough part came. The part that I remember oh-so-well, the time period when Evy was beginning to talk (his first word was “mama”, shortly after came “dada”), when he would have what we affectionately called “conversation time” with Scott every day after work when he would sit on daddy’s lap, giggling and smiling, baby babbling away as if telling him all about what we did that day. The many times when he would be so very engaged with whomever was around him. All of his huge smiles for my camera, never upset with his mommy for making him take picture after picture. So, why is this hard for me to see? Because none of it matches up with our reality now. Nothing about those times gave us any warning whatsoever that something wasn’t quite right in his poor little brain. None of those things sound like a child who is neurodiverse, or autistic.
I’ve often looked back on that happy period of time, and wondered if I just missed the signs. Did I just imagine that he was developing in a typical manner? But in looking back at these pictures, I can see that the answer is no. None of the memories I have of him before the age of 1, or 14 months to be exact, ever seemed anything but par for the course. He was always so interactive, easy-going…..
And my tears started flowing. Right in front of Cody, and Evy, there wasn’t anything to be done to stop them.
“This is so unreal….this just CAN’T be right!!!!”
“None of this seems like a child who is autistic….did a flip just switch when he was 14-15 months? Or what the hell happened to make things change?!”
“Do other neurodiverse babies show such a change around that age?”
“Is there something I can do to change it all back for him?”
My brain screamed out question after question….and I got in the loop of “This just can’t be!!”
After a warm hug from Cody, when I shared with him why I was crying (not in too much detail, just enough for him to understand why mommy was sad), we got back to the happy reminiscing and finished our project. We proudly closed the now completely full album, and put it back on the shelf.
But hours later, that feeling of “This just can’t be!!” still lingers even as I write this. And I’m left with what feels like 1000 questions that I cannot answer.
Since I can’t answer them, I’m going to pour them all out right here, and leave them on this virtual page. And maybe some parent or caregiver of a neurodiverse child somewhere in the world will see it, and reach out.
Do other parents of little ones who are neurodiverse ever feel this way? Do they ever wonder if this is really their life, and the life of their precious child? Do they ever wonder if they could have done something differently, and prevented all of this from happening? Shouldn’t signs of brain abnormalities have presented right from the start? Why did it take until he was over a year for any warning bells to go off?? Am I feeling any of this because we don’t yet have a firm diagnosis? And if so, will I feel any better once we do??
Still with the tears.
Still with the sad heart.
“THIS JUST CAN’T BE!!”
~Thank you so much reading, and supporting Evy’s journey. If you are a parent, caregiver, therapist, etc of a child who is neurodiverse and you want to reach out with any answers, comments, or even just to say “hello”, please do so. Your thoughts & comments are welcomed, and needed.