The excerpt below is from our webinar Challenging Behaviors of Children with DMD. Thank you to our guest psychologist Dr. Natalie Truba of Nationwide Children’s Hospital. Click here to listen to the podcast episode.
Stress Impacts on Parents
as Individuals and as Partners
The expectations prior to giving birth are real.
Nobody is sitting there thinking, “Oh my gosh, I hope I have kids with chronic medical conditions that are horrific and going to cost all this time and money and pain. That sounds super fun.”
No, you have all these hopes, expectations, and dreams for your kid. You give birth, you’re doing great, and then you start to notice over time that things aren’t quite right. There’s a grieving process to that and not everybody grieves the same. Parents may grieve differently and that in and of itself can cause stress on your relationship.
But you don’t know that until you’re in it. It’s not like you’re sifting through prospective partners and asking, “OK, so what would you do if your mom died?”
You’re not gonna have that conversation. And they’re not gonna know.
If they do tell you what they would do, they might actually not do that thing because they’ve never been in that situation. So, there are parts that we just don’t know about another person until we’re there. And partners can sometimes end up being incompatible.
Living Different Lives
There’s a reason why the majority of divorces occur in the first four years after having children for the first time.
Having children is incredibly stressful and it changes the nature of your romantic relationship naturally. Kids take a lot of attention, and you don’t necessarily have as much attention for your partner as you did before kids.
For our Duchenne population – where you have kids who need more attention over time and they decline more over time – that never goes away, right? Typically your kids get to a place of less need and you say to your partner, “Oh, we can reconnect now. We’ve got this.”
But for these kids with Duchenne, that need for help persists. You can easily find yourself all of a sudden, ten years later, like, “We’ve been living different lives just trying to survive and I don’t really have a partnership.” Then that realization adds its own stress.
Sometimes families dissolve and now that’s even more stressful because caring for these boys with two adults is hard enough, let alone doing that as a single parent.
Parent-Child Mismatch
Likewise, the things that these kids need sometimes are not compatible with who the parents are.
Not every parent is incredibly patient. Some parents have ADHD. Some parents have their own mental health issues. Some parents have very high stressors outside the family.
There’s not always a good fit or a good match between parent and child, and that’s not your fault. That doesn’t make you a bad parent because you have less tolerance than another parent for some of these things that come with Duchenne.
It just makes you human.