Simply put, at this stage of the disease, many parents are sprinting and gasping for breath.
Parents are often staying up late at night, losing sleep, excessively worrying, neglecting themselves, their friendships and maybe even their marriages. There is just so much to do and to learn at this stage, what other options are there – especially with adequate respite care being so scarce?
The unfortunate truth is that, yes, many parents are living in a state of chaos and crisis at this stage. While sprinting seems like the only way to manage the situation at this time, parents can’t sprint forever, and unfortunately switching from a sprint mentality to a marathon mentality may be very difficult.
But it must be done. The child with Duchenne benefits more from parents who prioritize their own self-care and their own mental health than those who don’t. Parents must slow down, see the big picture and make priorities. After all, a family is composed of more than just a child – even if that child has Duchenne Muscular Dystrophy.
Parents as Partners
For parents who are married or in a committed relationship, the relationship often endures significant struggles. It sometimes even resembles the relationship of roommates rather than romantic partners. Overcoming these challenges often takes purposeful and creative thinking – and two dedicated partners – to keep that passion alive.
Between the common role changes that often occur with spouses, and the feelings of detachment and resentment that slowly simmer, prioritizing the relationship and implementing effective communication skills is well worth the effort.
Unfortunately, sometimes the Duchenne family does become a household with just one parent. In many ways, it’s both easier and harder for those who are parenting solo. Decisions can be made unilaterally, but decisions can also be intimidating. Friends become essential, but friends also have their own lives to live. Just about everything rests on the solo parent’s shoulders alone.
Parents as Parents
While Duchenne is widely known as a muscle disease, the family dynamics that tend to emerge with DMD can prove much more challenging. Just about every single relationship endures multiple unique stressors – including parent-child relationships.
Despite this, the Duchenne family can build a strong foundation for the struggles they will face. Relationships can strengthen and households can become calmer. It all begins with a parent who is willing to reflect and to make changes.