The Tough Stuff

My husband and I rarely travel anywhere at the same time without our children. Especially overnight for multiple nights. As a matter of fact I think it only happened one time 3 years ago and that’s because I needed Neurosurgery. As I recall though, I think I was forcing my husband to stay behind even then because Caleb was 18 months old and Ari was 6 weeks and I thought I would feel better knowing they were with daddy and didn’t change my mind until a few days before. It’s not something I’m comfortable with so I just don’t make a habit of it.

What happens when you’re a parent and you and your spouse leave your children at the same time is that you have to make a formal and legally binding contingency plan for the worst case scenario. We updated that document the week we left town and it creates a pit in my stomach everytime I review the fact that in the most awful of scenarios, they would need legal guardians.

In all honesty, I don’t worry about Ari. She has a mixed language delay but ultimately, when she’s landed where she’s going to land, she’s going to be ok in the world. I live, however, in a constant state of worry about Caleb. It’s not because he doesn’t have an excellent prognosis or that he isn’t making incredible gains. The road is long. The days feel even longer. I know what he needs and how to fulfill those needs because before I ever knew I’d end up being Caleb’s mom, I happened to pick a college major and get a couple of degrees and a decade’s worth of experience doing the exact thing he ended up needing in the world. But what happens if I’m gone?

I can’t say it out loud. I cry when I type it but physically I can’t say the words out loud. Because do you know what can’t happen? He can’t live in a home. He can’t not have his voice heard. He can’t have his stims suppressed. He needs to be around typical peers and screech and talk and flap and hold things 2 centimeters from his eyes and he needs to be with people who understand those things are the same as eating and breathing for a kid with Autism. I don’t come from a family of pediatric speech and occupational therapists. So that means I make a lot of contingency plans and “just in case” documents and hope that if nothing else, being under the care of people who love and “get” him will ultimately be what carries him farther in life than anything else.

I don’t know what happens to Caleb in a world where I’m not his person. I do know, though, that if it isn’t me, there’s a whole tribe of people who will love and advocate and speak up for him on my behalf. And that’s never anything to be sad about.

Love and Autism,

Erin