That type of exhaustion that you feel in your bones. You wake up in the morning, and before you even get out of bed, you’re exhausted.
I feel like all I’ve done for the last twelve months, since we got our diagnosis, is worry and wait. Wait and worry. Waiting for services, for therapists, for appointments. Waiting to be able to access Early Childhood Intervention Services. Worrying about the choices I’m making. Is this the right occupational therapist for her? The right speech pathologist? Am I spending her funding money wisely?
As the money slowly diminishes, I have more decisions to make. What does she need more? OT or Psych? Or something I’m missing entirely? Did I do the right thing, throwing everything I could at her in the first twelve months? What if the money runs out, what if we can’t pay for the services she needs in the future, because I am spending too much of her funding now?
Who the hell am I to even be making these decisions? I’m not an expert, I don’t know what I’m doing. I feel like I was hit with a diagnosis, given some money, and told to go away and figure it out.
More decisions. Which kindergarten is best for her? Wait, never mind kindergarten, which school will be best for her? I lay in bed and cried the other night, because I didn’t have the foresight to put her name on a waiting list at birth, for a school I didn’t even know existed at the time. What if that was THE school? The school she would have thrived at?
What if every decision I am making is wrong? Who am I to be making decisions that affect another persons entire life? I spent the better part of thirty years making wrong decisions about my own life, and made a complete and utter wreck of it.
I feel like I am carrying the weight of Milla’s future on my shoulders. And every day, as I face the challenges of parenting a child with autism; the meltdowns, the anxiety, the irrationality, the obsessive compulsiveness, I’m doing it dragging this heaviness around with me.
I feel like I’m fractured into tiny pieces, and I’m trying to hold them all together. As one piece falls, I go to catch it, and more pieces fall from where I moved my hand from.