The following is an excerpt from our webinar with Lauren Fritz about adolescence and Duchenne. Lauren Fritz is the mother of two sons with Duchenne. She is a fulltime private practice therapist and also cares for her sons. To listen to the full podcast, click here.
Adolescents and Community
I think the rules are 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, your caregivers, and in your life perspective. And I think you just go for it. You know, 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. I thought, “Well, isn’t that cool?” You know, it may be something that simple.
There is an awful, awful lot of joy in this disease. 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.
We aren’t jet setters. We’re usually home or near home. 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, or it’s silly stuff. It’s simple stuff, but it’s just not missing the richness of our lives.
There is also sorrow inherent in this disease. 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. And I don’t know how we avoid that.
When the sorrows do come, we’re trying not to bury them. Sometimes it’s not about trying to take it away. One of my sons was sad about something recently. He had a memory of something that happened in the summer, and he was just remembering it. I just crawled in bed next to him and just hung out with him and gave him a hug. I don’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, that’s what most of us want – to know that somebody will be there with us. That we’re not really alone when something hard is happening. And really, if you think about it – 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. And this goes for all of us.
So, I that’s how I look at these adolescent years. As we’re trying to support adolescence, whatever this journey looks like, for me as a parent I can try to be there in that way, whether I’m needing to be up-close as the caregiver or whether I’m offering advice or whatever. Then I can give the message that there is community and there is love and support and nurturance.