by Jessica Rownd
about the author:
Jessica Rownd is the mother of two boys: one with Duchenne Muscular Dystrophy and one without. She is a great advocate in our community, blogging her life experiences and collaborating with many of our non-profits. To read more of Jessica’s blog about her family’s journey with Duchenne, please visit Laughing Through the Tears.
Why I Live My Private Life in Public
I heard this question on TV yesterday and it is one I ask myself quite often. My answer is: I want to help others who feel the same way as I do.
It’s hard to navigate a life-changing event that changes everyday and never goes away. And on top of that, there are no instructions on how to deal with the challenges it presents.
To Normalize Emotions
I tell my private story because lately I have been feeling defeated and I want others to know that it is ok to feel that way – just don’t get stuck in that feeling, I try to feel it, process it and then figure out how to feel better.
Unfortunately school life is throwing some curveballs again and this time I not only feel frustrated and disheartened by what is going on, Patrick and Wyatt are feeling the same way. It’s hard to be an advocate when the person you are advocating for is worried about repercussions.
But somethings are just not possible to let go, because as much as Wyatt is a challenge, I thank God he is able to verbalize what is going on at school, unlike others who cannot. I not only worry about my child but I worry about other children who have challenges like Wyatt and are not able to tell their parent or caregiver what is going on when they get home from school.
To Encourage Advocacy
I tell my private story to be a guide and help others who question if they should stand up and shout from the roof tops: “This is not ok and he deserves better!”
I tell my private story so others know how exhausting and defeating it feels after you have shouted and no one actually listens. Or even worse, they feel like they know better than me – the one who lives it everyday and every night. Duchenne doesn’t sleep.
Just yesterday I read a post by a DMD mom whose son’s teacher asked her if on rainy days her son could leave his wheelchair outside of the classroom so the mud would not get in the classroom. I wish you could read all of the supportive responses.
When I told Wyatt he was appalled that a teacher would ask that but was not really surprised. Our favorite response was from another mom who said to the teacher: “sure but make sure you also ask all the other students to leave their legs outside the classroom.”
This is what we as a community deal with all the time. Even the physical things that are easy to see get questioned as a way to make other’s lives easier. Imagine now, the issues that others cannot see and what we deal with.
Because It Helps Me
I tell my private story to help me process it all and to get feedback from others as to what I can do better.
I cannot explain what it feels like to pick up Wyatt and he says, “well they succeeded and I can no longer go in that classroom. I am ready to quit school.” Which of course I told him we won’t let him do.
I know how he acts when get frustrated and when he is pushed our bullied by others especially adults but I have also given them tools to help him not to get to that point as often. So we will again figure out a way to best support Wyatt and still keep him on track to graduate in 2025. (2 years and 3 months to go, but who’s counting?).
For the Hope of Change
I will continue to tell my private story to hopefully change the perspective of those who do not have a child with special needs. And I will hope that my private story helps them be more empathetic to those of us who have to navigate this incredibly hard maze of life without a map.
