The following is an excerpt from our livestream with Mariah Graves about Siblings of Individuals with Duchenne. Click here to listen to the podcast.
Sibling Reflections:
Talk with Your Kids
You know, our family did not deal with grief.
My mother was very much the type of person that could fix everything. And if she swept it under the rug enough, we didn’t have to face it.
It was really hard for her when my oldest brother passed away because that was a turning point for her. Now she couldn’t hide from it anymore and so a few things happened around that time. One of the big things is that we started talking about things a little bit differently as a family.
So I think if I had any advice to share with parents, it would be just that: talk with your children about Duchenne, death and dying.
The Reality
Here’s one thing that I know for sure: we are all dying, just at different speeds.
Talk with your kids about that before it happens in your family. Talk about it as the reality. We are all going to die and I think not talking about it is a disservice to everybody, honestly, because there’s nothing to hide behind.
We can’t start dealing with things unless we face them, and we can’t do that unless we’re open with one another and we have real conversations about it. Don’t sweep things under the rug because reality is reality.
Chances Are…
I think you know being a sibling is… unique. There are challenges. Talk to your kids because chances are they may not feel comfortable verbalizing some of the things that they’re feeling. Some of them may be too young to even be able to express how they’re feeling.
If they’re being “rebellious”, find out why. Don’t just chalk it up to them “being spoiled”, because chances are something is going on. Find out what it is.
Children are naturally inquisitive. As kids, we learn very quickly that when we ask a question and we get shut down right away, don’t ask another question about that, right? Nobody has to say, “That upset your mother. Don’t do that again.” You just naturally pick up on those things.
Talk about All of It
I think talk about all of it, always be honest, answer all questions, even when they’re hard.
Ask children questions to open that door to let kids know it’s OK to talk about it – whether they’re young kids or adult kids. It doesn’t matter, you know? Just open the door and ask the questions so that it’s a safe space for people to just share their open, honest feedback with each other and their feelings. That’s really hard to do, but that is so important.
You know, we’re human and every human has a tendency to be a little bit selfish. And so as a kid, sometimes we do focus on ourselves. But I think the kids know that the parents are going through things, too. And I think we would be better equipped at, you know dealing with that dynamic if we better understood what you were all going through.
I think the other thing that I would say to parents about the siblings is: be open and honest with us about how you feel about it as parents.
So… talk about how it affects you as a parent.
Talk about how to manage stress. Find a way that you manage stress. We’re all individuals and how I might manage stress was certainly different than how my parents did.
Talk about it all. You -and your kids – have to find that way to get through it.