Our family went on vacation last week. A small town that borders the ocean, we took the kids to where my husband and I met. It’s home to me. It’s also home to my husband and where he hopes for us to one day retire. It’s where we met almost 20 years ago.
Almost 20 years ago – that was pre-marriage, pre-kids, and pre-autism. If you’d told me then what kind of life I’d be living now as the parent of a child with severe special needs, I’d have thought you crazy.
And why not?
Growing up, I knew no one with autism. Having very briefly studied it during a special education course I took one summer back in the early 1990s, I thought autism was an unfortunate communication disorder. I learned that it was more than that during that summer course, but with my focus of general education, it would be years later, and only when my son was walking down an autism diagnosis path that it crossed my radar again.
Always hoping to one day be a mom, I never thought that autism would be something that any of my children would be dealing with. Fast forward to today, and yes, it is something that one of my children deals with on a daily basis. It’s not the kind of autism my special education textbook described though. No, the autism my son has includes behavior issues, GI issues, seizures, and the loss of functional speech. It’s nothing I’d ever experienced nor something I ever expected.
Pre-marriage, pre-kids, and pre-autism, I had no idea how much I didn’t know. I had no idea how much I’d have to understand, how much I’d have to teach myself, and how much I’d have to learn to accept as well.
I’m still working on accepting all there is to accept as the parent of a chronically ill child. That part hasn’t been easy, but with the help of some friends, some of whom we ran into when we were back home this week, I know it’ll get easier.
For the most part, the friends we ran into have typical children. Even so, they’ve read my stories. They’ve clicked on links I’ve share. They’ve looked things up for themselves. They’ve asked for clarification of words and terms specific to autism and mitochondrial issues that Ronan has that they don’t recognize. They’ve watched us from a distance but have never waivered in their support for me, for Ronan, and for the advocating that we do as a family, some of which includes advocating locally for safer vaccines!
All week, one conversation after another, I could tell that what I’ve shared and written about and harped on all these years hasn’t been ignored. I couldn’t be more thankful. That’s because their typical children, some I used to teach or babysit or take to the park or the beach or out for ice cream – are now grown up, are living on their own, are married, and are having their own children. My heart burst with pride when I heard how successful and happy they are and that our experience has shaped decisions they’ve made as adults. As thrilled as I was, my heart ached knowing it could be a long time before we have the time and means to come back.
As we got closer to the end of our vacation, I started to think of a phrase – you don’t know what you’ve got till it’s gone. In coming back home, I’ve seen just about every day just exactly what we don’t have. We don’t have the life I expected to have and to live 20 years ago. But all week I’ve been reminded of something else.
I’ve been reminded of everything that I do have.
I have my family. I have extra time to spend with them – to laugh, to make memories, to take photos of my children where I used to live and work and play, and to reacquaint themselves with friends who are family. Together, we’ve had one whole week off from life and all of the obligations that life demands of us. We’ve spent one glorious week together and have spent it near the ocean where we thrive.
Besides the extra time and the family fun, and the stunning beautiful sunny weather, I had a chance to catch up with friends I knew well before marriage, kids, and autism. I was a little hesitant to bring some things up in casual conversation, but these people know me. They understand me. And from a distance and for all these years, they’ve respected what I’ve had to do for my child.
The support we’ve gotten from the moment we crossed over the state line last weekend from these lifelong friends has been phenomenal. From lodging to making Ronan’s meals to supplying groceries to filling our days with family-friendly activities, they only want the best for me, for Ronan and for our little family. It felt good to be back home.
As good as that felt, during the week, as I re-familiarized myself with the routes I used to drive, I would sometimes get turned around and take a wrong turn. That was embarrassing and made me think of another expression – you can never go home again. I know exactly what I lost when I left here, but I know that when we get to come home, if only temporarily like last week, we will always be welcomed – and that includes Ronan and the everything that his diagnosis comes with.
To where things were completely different than they are now.
To a little place that I knew like the back of my hand.
To the ocean air that helps breathe life back into us.
To where friends will always be friends.
Cathy Jameson is a Contributing Editor for Age of Autism.