A friend said to me recently that I look like I got it all together. That I’m always so positive and happy. And while it’s mostly true—not the having it all together, not even close. But I guess I am a genuinely optimistic and happy person.
But I know I’ve felt that way before too. Just a tad envious of other people and other families. I’ve thought someone has it easier. Someone has better autism—what does that even mean?! That’s kinda ridiculous to think, I know, but I’m human. I know we are all fighting a battle that is unique to our story. Nothing undermines or defines your hardships, they’re yours.
I just choose to focus and share the good. The joy and all the amazing that Noah is. Because it’s the truth, and because it matters. That’s what’s important, and that’s what’s going to make a difference.
But the honest to God truth is, I'm scared. All the time.
I’m so scared that if I let that fear creep up, it will swallow me whole.
I’m scared my son will never speak. That I might actually never hear him call me “mama” or say “i love you.” I’ve made it almost four years, but I’ll tell you what, I’m starting to wear thin.
I fear Noah will never make a friend. Or that he won’t be liked by other kids. He’s so loved in his class right now, but he’s only in preschool. These are the racing worries where you hope those little packs you made with your best friend about your babies growing up together and then they’ll become best friends really holds truth.
Just the other day I was driving and saw a bus drop off a group of kids and they all piled into “mom’s” car because it was raining. And I wondered, would Noah be invited in that car at that age? And because I couldn’t answer that question, I felt the warm tears fill my eyes. These little intense moments of realizations seem to be happening more frequently, and boy do they take my breath away.
I guess I can’t really picture Noah past age five or so. I’m not sure if it’s because I don’t really know what he will look like as an older kid or because I haven’t accepted forever. Probably a mix of both I’d say. I just don’t know where Noah will fall on the spectrum so to say. This upcoming year will tell us a lot about that one, whether I’m ready to face it or not.
I worry that could mean Noah needs therapy and support for years. This time last year, I was still in that place of thinking he would just need all the early interventions till kindergarten. Then, he would be fine. Even mainstream! Now, it’s a new plan with new hopes. Although, a teeny tiny itty bitty sliver of me still believes last years thoughts.
To add to the brewing pot of fear already stirring, I have a new one and it is probably the most paralyzing thing I’ve felt and it shakes me to my core.
I fear Noah that will end up alone.
We won’t be here forever, and the family we have is our age and older. What if Noah does need lifelong care? Who will take care of him?
And a way to give him a better chance at not being alone is a sibling, and that hasn’t been working out all too well.
So in turn, I fear all I will ever be is an autism mom.
And I know I'm not supposed to feel this way. I'm supposed to believe everything will be okay. And I do, ninety nine percent of the time. But that one percent, it gets you, and it gets you good.
Noah—my beautiful boy with his perfect angelic face will grab mine and just stare deep into my eyes and I will be reminded that one’s childhood is not predetermined. And as the quote goes—motherhood is not about the child you thought you’d have it. It’s about embracing and celebrating the one you were given.
So no friend, I don’t have it all together. I’m a walking disaster just like the rest of them. I don’t know what my son’s future holds, and there are more unknowns that knowns for him. As a mom, that’s a hard truth. I go through the waves of emotions—daily, heck, hourly! This journey is not for the weak. It is without a doubt the hardest thing I’ve done, but also the most rewarding. But you already knew that.
One thing I’ve learned is that each day is the chance at a new beginning. Each day we are stronger and wiser than we were before.
Each day we can bravely face our fears— that’s all I’m trying to do anyways.
“It’s no use going back to yesterday because I was a different person then.”