The lives of parents of children with Duchenne are exhausting, in so many ways.
From the physical demands to the emotional and cognitive demands, the stressors and responsibilities of parents of children with Duchenne can be undoubtedly daunting. Not only are the responsibilities extensive, but they are also relentless and often become more complicated with time. As challenging as this sounds, there are even more layers than those listed above.
Unfortunately, these demands, in conjunction with other common stressors in their lives, can often take a toll on a marriage. The constant stressors frequently augment friction and differences between spouses.
Despite the fact that both spouses likely contribute to the challenges in a relationship, you can really only change one person: yourself. The good new, however, is that when one person makes personal changes, it can create a ripple effect of changes thereby transforming the relationship itself.
There are at least two major ways that you can instigate change within your marriage. These don’t even have to be done perfectly, simple progress is enough.
Those two changes are prioritize yourself and re-examine your point of view about themes in the marriage.
Emotional health, physical health, social health… they will all be addressed when “things slow down,” right? When it comes to Duchenne Muscular Dystrophy, things never really “slow down.” There’s always some medical, school, or insurance project to address, especially if multiple family members present with symptoms.
Though it may seem impossible to prioritize the time for health, the consequences that parents of children with Duchenne face if they do not take care of themselves are dire and far reaching. This means that self-care is foundational and is not optional.
In other words, it just doesn’t work in the long term to “get through” the Duchenne projects first and then take time for one’s own health after. That “after” time after will never come. A parent must take care of him or herself first to be able to get through those Duchenne projects.
Here are some good places to start on the road to self-care and personal health:
- A hobby – Just having a hobby or two can give you a great brain break when life is getting overwhelmingly intense. A quick change of thought patterns can help to decrease the sympathetic engagement, even if you can’t physically leave the situation. This simple mental break will benefit your overall mood and physical health, and even more so when you are able to spend uninterrupted time fully engaged in it.
- A therapist – If you find it helpful to chat with a therapist as part of your self-care, rest assured they don’t have to be experts in Duchenne, or even in parenting a child with a disability. A good therapist will be able to learn from you, research on his or her own and guide you in a productive manner.
- Medication – If you find that you really don’t feel like yourself, that self-care techniques aren’t helping you feel better, or that every day is just too hard, it may be time to consider meds.
Roadblocks for Men
Unfortunately, meeting self-care and mental health needs often have multiple roadblocks to overcome for American men.
While some sort of physical activity or a hobby is typically accepted, there is a very real stigma in our culture regarding men getting help for their mental health and coping with life trauma. It can be very challenging to find a place to begin, but here are a couple ideas:
- Duchenne Dads groups can be a great way to start sorting through the struggles. Even just knowing that someone else exists out there dealing with similar things can help.
- Easing into Therapy – Talk therapy can be rather challenging for men to commit to. One way that dads can ease into it is by trying out marital therapy with their partner. Even if there is marital strain, going with your partner initially may be less overwhelming than going alone. Even if a man never participates in talk therapy alone, individual benefits can still be reaped with martial therapy.
Re-examine Your Point of View
Once a parent is able to invest more time in him or herself and has a few reserves built up, many relationships benefit from sincere reflection on one’s own personal patterns and tendencies. Often, spouses in marriages with children with special needs unearth varying themes pertaining to guilt and consumption and allowing resentment to grow.
Acknowledging these tendencies and working to see that both you and your partner handle a lot will lay the groundwork for making more notable changes, such as:
- Express Appreciation – Just expressing appreciation for all that your partner does can be a game changer. Beyond that, actually embracing differences can transform the relationship even more. Please note: if you’re the primary caregiver, it’s important to make space for your partner to learn ways to be involved and for you to value his/her input.
- Embrace Differences – Those differences that create so much headache in the relationship, can really help the relationship shine, if looked at in a different way. Embracing personality differences, grieving differences, and emotional differences can significantly improve the marriage and parenting efforts, too.
- Practice Easy Repair Gestures – No matter how healthy your relationship, mistakes will be made and feelings will be hurt. Get in the habit of easy repair gestures so those tense times don’t last as long.
- Forgive – Lastly, forgive your partner and forgive yourself. Stay in the present as much as possible and embrace the fact that tomorrow is always a new day with a fresh start.
From insults, screaming to passive-aggressive behavior, there’s really no place in a marriage for demeaning your partner, particularly when there’s already so much stress to endure. In other words, there’s no reason to hack at your own boat during the storm.
Redirect your frustrations. Redirect your anger. Talk it out solo in therapy or invite your partner to marriage counseling to sort it out with some constructive guidance.
Whatever you do, just don’t weaken one of the very people who can help you stay strong.
Our deepest gratitude to Dr. Laura Marshak, author of Married with Special-Needs Children and Going Solo While Raising Children with Disabilities for providing your insight and expertise for these very complicated dynamics.
More to Consider
- Going Solo While Raising Children with Disabilities
- Parent Mental Health
- Dystrophin and the Child’s Brain