Life is Duchenne is unpredictable. It’s just part of the disease.
As a response, many parents attempt to gain control of their external life to create a sense of internal safety. However, attempting to control the environment – or other people – only creates temporary relief, if that.
In many ways, the attempts to control the chaotic Duchenne life are at the root of the anxiety, not the remedy for it. Anxiety is often indicative of misplaced attempts of control. Ultimately, the only thing a parent can really control is him or herself.
While the stress of parenting a child with Duchenne Muscular Dystrophy won’t really go away, parents can make choices to reduce their anxiety. They can make choices to focus their efforts of change on things they can actually control. For example:
- Although parents cannot control how others treat them, parents can control their own expectations of other people or situations and how they respond to them.
- Although parents cannot choose their emotional responses, they can choose whether to regulate, self-soothe, and label those emotions.
- Although parents cannot control the results of their efforts, parents can control how they cope with stress and how hard they work.
- Although parents cannot control what other people think of them, parents can control how they speak to themselves.
- Although parents cannot control past events, parents can control their present choices.
- Although parents cannot control how others behave, parents can control the boundaries they create, communicate, and respect.
