The excerpt below is from The Duchenne Life episode Independence, Interdependence and Co-dependency. Thank you to our guest Lauren Fritz, mother of two adolescents with Duchenne and also private practice therapist. Click here to listen to the podcast.
We Adapt
Adolescence in general is a time where there already is strong emotion. That’s a hallmark of adolescence. And I do think about having a life that is in touch with our sorrows and our joys a lot.
I don’t know how much time I’ve got and I don’t know how much time my boys have. I want it to be marked with meaning. I want to notice what’s going on and I want my boys – as best as we can – to soak up the meaning.
And that’s not necessarily something that is natural to do when you’re a teenager. That’s something that often happens when you’re older. I think about that when I think about adolescence.
We Adapt
You know, there is sorrow inherent in this disease. There just is.
In the beginning there is significant grief and I don’t want to minimize that. There are lots of little losses that happen all the time. I experience them as their caregiver, as their parent. They experience them in their daily lives. I don’t know how we avoid that.
My son who is 19 – and who has not walked for five years – at times will say something out of frustration, like his body’s not working the way he wants. But for the most part, this is just how we do it now, you know, he uses his chair and that’s how he moves.
In my house we have a lot of animals and it is completely normal to see a power chair with a cat sitting on it, like the equipment in our house is just as normal as anything else. You move the cat off the power chair. It’s completely interchangeable with anything else in our house.
I think we human beings are pretty adaptable, resilient people if we can find a way to make things work. Generally, I think that’s kind of how it goes – if there’s a different way to make it work and it can do the job, usually we adjust over time.
So it all just becomes completely normal…
Joy
I think the rules are kind of different when you’ve been dealt this kind of hand. I think you get to develop a resilient kind of humor. I think you get to develop a different kind of togetherness with your family and with your caregivers, and in your life perspective. And I think you just go for it.
We aren’t jet setters, we’re usually home or near home. But I think you don’t miss opportunities to enjoy what’s in front of you. I was sitting on our couch today and I was waiting for one of my boys to yell when he was finished in the bathroom so I could go help him. I was looking out the window and there were five cardinals out there. And I thought, Well, isn’t that cool? You know, it may be something that simple.
There is also an awful, awful lot of joy. There’s a lot of silliness. There’s a lot of wry humor that happens. And I think we almost get an invitation to the wry humor, when we have to put up with everything we put up with, with this disease, you know.
It might be just watching our goofy dog as we play catch with him, or it might be laughing at somebody who’s passed gas, you know. It’s silly stuff and it’s simple stuff, but it’s appreciating the richness of our lives.
Not Alone
And when there are sorrows, my boys aren’t trying to bury them. One of my sons was sad about something – he had a memory of something that happened in the summer – and he was just remembering it.
Sometimes it’s not about trying to take it away, you know? So, I just crawled in bed next to him and hung out with him and gave him a hug. I didn’t try to take it away because I’m not powerful enough to take it away. But I can be with him.
And oftentimes, that’s enough. Usually, what we want to know is that somebody will be there with us and that we’re not really alone when something hard is happening.
Really, if you think about any of us (and this extends way beyond adolescence), if we have to do something hard, we just want to know that we don’t have to do it completely alone.
So that’s kind of how I look at these adolescent years.
That as we’re trying to support adolescence – whatever this journey looks like – that for me as a parent I can try to be there in a way – whether I’m needing to be up close as the caregiver or whether I’m offering advice or whatever – that I can give this message: there is community and there is love and support and nurturance.