Not in the way of losing a person, but in losing sight of what you thought would happen.
When we were first faced with his diagnosis I was completely numb to it. Reading through checklists in attempt to rule each box out. There was no way that could be my child.
I took my prenatals, we had a strong loving marriage, our home was safe. I could count on one hand the times that anyone in our home had even raised their voice. It was naive, really.
There was just no way.
As I became more familiar with this new concept I kept it deep in my chest that my child was not severe. He was going to be fine. A little quirky, but okay in the end. Yes I know this is twisted in a sense, but we are all learning and growing and there has to be a starting point.
Then, the future started to look more and more bleak. The tantrums stayed long past age three. Speech development spread more and more thin. Behaviors came up that just weren’t normal for his age. My friend circle closed in on me and soon enough I realized that I had been isolating ourselves. Maybe in fear of what other people would think, maybe in pure exhaustion. The amount of mental energy that it takes to constantly apologize or set boundaries for your child in public is insurmountable. Why would I bring him into a new environment just to spend the entire time redirecting him from someone else’s electronics?
This is when the anger inside me started. Feeling robbed at my own exclusion.
While other children went to their first sports lessons and play dates, I was stuck in my shell of a home, listening to my son shriek at his therapist.
While most moms sent their five year olds to school and breathed a sigh of relief, I was driving almost daily to pick him up early because of “yet another bad day”. The school pick up line seemed like a far fetched privilege that we would never earn.
While many mothers snuggled up to the bliss of their newborn babies, watching their tender older children interact with them, I was sleep deprived and “losing it” with my kids from the rocking chair.
Anger. Resentment. A burn in my chest.
Now, with an eight month old, a three and a half year old, and of course, my six year old, I still have some flames to put out from day to day.
There’s a lot of anger and resentment still.
Never at him, always at the situation.
This has ebbed and flowed alongside a sense of bargaining. Medications, therapies, supplements, parenting tactics. Whatever I could find on the internet to ease the struggles that he faces. I despise that my child has to struggle so much. While most six year olds are riding bikes in the driveway, F is stuck in a cycle of strong feelings and sensory irritation that I just can’t seem to take away for him. I would carry it myself if I could.
When I say that I want to relieve him of his autism, it is purely the parts that hurt him. My heart soars at his sweet personality and wit. I would never think to change who he is.
But there’s a dark side that this frail child has to carry. Little tasks are too hard for him. He doesn’t have the same opportunities as his peers and he never will. His sensory needs cause him physical pain. As a parent I just want to take these burdens away from him. He’s only a child. If I could bargain them away, take them upon myself to offer him relief, I wouldn’t skip a beat.
Now this next stage, depression, is woven through it all. I wouldn’t call it isolated. This isn’t linear by any means.
Some days we all feel confident and balanced. Others we feel completely defeated.
Anger, bargaining, depression, we travel back and forth. Tourists of our own daily experiences, tangled with so so many beautiful and wholesome moments.
Raising this boy, we live within this tangle, grasping at the ends to make sense of it all.
My boy is complicated.
So perfect and so raw, so complicated.
We are working together towards acceptance. I know we will get there one day. I’m not afraid to admit that we are living very real steps to reach this.
There will be a day when I don’t feel the need to stand over my boy at all times, managing and protecting. I know he’ll find his way to a manner of independence.
I won’t need to envelope myself in the isolation of home.
Our family dynamic will loosen and expand. Blurry memories of the nonverbal toddler that he once was.
How freeing this will feel.
Despite the grief of this journey, my one constant is how much I would do for my boy. To the ends of the earth I will fight for his right to be accepted.
This means within myself too.
This non linear journey we’re on together, I’ll climb those mountains to accept every inch of my son.