Our life is not fine, but it also isn't over

Last month’s episode of This is Us has been on my mind a lot lately. The way they captured Toby and Kate’s marital strains of having a child with a disability. 

It felt familiar. 

While Kate embraced her son with joy, as much as she would if he weren’t blind, Toby focused on himself and took distance from his family to focus on his own needs because he admitted that having a blind baby made him sad.

It hit so close to home. 

Of course, my heart was broken the day we learned our daughter had autism. 

But I was there for every moment of it. 

Every doctor’s appointment. 

Every evaluation.

Every IEP meeting. 

Every meltdown. 

I dusted myself off and got back up to fight for my kid. To give her the life she deserves. The life I have to fight for her to have because being sad about it isn’t the answer for me. 

I feel like my husband is never here. Never truly here. 

And when he is, he tells me that all I talk about is autism. That he doesn’t want to hear about it anymore.

That I railroad autism into every conversation. People will be talking about chicken Parmesan recipes and somehow I’m talking about therapies and sensory processing. 

Sometimes when I am hiding in a dark closet from my screaming child because I need a minute, I wonder why it feels like I am carrying more of the load. 

Who decided that I had to be the one to fight with her every morning to get ready for school, to brush her teeth, to eat breakfast?

Why do I have to ask her to put her shoes on twenty-seven times before she actually does it? 

All while trying to get myself ready for work. 

Sometimes I ask him to do more and to do it regularly. But I’m the mom. This is what moms do. 

And it feels like I don’t matter. 

That I have been sucked into the vacuum bag of special needs parenting. 

Why does the school always call me and not him? 

Why does my daughter barge into the bathroom and demand I open a package of goldfish when her father is sitting on the couch?

All of the parent training, behavior plans, and reinforcing her ABA skills at home are put on me because he doesn’t understand it. 

He didn’t learn how to do it. 

And he thinks I am being a raging bitch when he sees me do it. 

And I’ll remind him—don’t comment on her behavior. Work through the attention-seeking fits. Hold your ground. 

No means no. 

Next thing I know we are fighting.

Fighting about autism. 

Fighting about finances and work schedules. 

Fighting about how much I fight with everyone. 

And like Kate, I just don’t get it. I get being sad and trust me—I am plenty of sad over here.

But our life isn’t over. 

I’m not going to be quiet about it and pretend our life is something that it isn’t.

This is who I have become and I am okay with people not liking me. I know that autism is the last thing he wants to hear about when he gets home after a long day but I can’t do this alone.

Categories: , , ,