—Images by artist James Norbury—
Change, Grief and Duchenne:
The Way You Make Me Feel
“Big Panda,” said Tiny Dragon, “I like the way you listen to me and talk to me and travel with me, but most of all, I like the way you make me feel.”
Life with Duchenne is full of constant changes.
Health changes – day to day, hour to hour, sometimes even minute to minute.
Familiar things in our lives change – the home we have when children are young won’t look or even be the same home when the children are adolescents, or adults. Holiday traditions will change almost every year, so that they’re barely traditions at all. Relationships we thought would withstand the cruelest hardships fade away while we’re looking the other way.
How people outside “The Duchenne Bubble” treat you changes – from smiling at the cute child toddling along unsteadily, to a questioning furrowed brow at the older child awkwardly waddling along, to stares, avoidance and isolation for the adult in a powerchair, and finally, more stares, avoidance and isolation for the bereaved parents.
Everywhere we look, there is change, loss and grief.
It’s a lot of physical work, a lot of mental work and a lot of emotional work. Through all these changes, it is so valuable to have extra hands to help with all the work.
But perhaps the most important thing a friend can offer us, in the midst of all this change, is simply being a constant in our lives… being a dependable, predictable safe place to shelter as the constant change, loss and grief of the Duchenne world unrelentingly create chaos around us.
Change, Grief and Duchenne:
The Company
It’s a question I’ve heard a thousand times before: “Which is more important, the journey or the destination?” And it’s an answer I’ve never heard before: “The company.”
As a mother of a child with Duchenne Muscular Dystrophy, this unexpected answer is both obvious and profound to me.
Yes, of course. The company is most important.
The company.
Change, Grief and Duchenne:
The Shooting Star
Sometimes during the Duchenne journey, it seems like the sun has gone forever. Even after a fervent search, the darkness can seem all encompassing.
Sometimes during the Duchenne journey, a friend can help you see a shooting star through all that darkness.
And sometimes during the Duchenne journey, the shooting star is the friendship itself.
This tender graphic really hits home. Thank you to author James Norbury of Big Panda and Tiny Dragon for the simplicity and beauty in this special piece.
Change, Grief and Duchenne:
No Words
Words are not adequate for all things.
That describes just about every single thing in this Duchenne journey. The highs. The lows. The in-betweens. There are really just no words…
And sometimes when there are no words, the company of a good friend can make all the difference.
This tender graphic really hits home. Thank you to author James Norbury of Big Panda and Tiny Dragon for the simplicity and beauty in this special piece.
Change, Grief and Duchenne:
This Hole
The Duchenne journey has countless holes in the path. Sometimes the ride is only bumpy, sometimes we’ll be knocked down, and sometimes it will feel like we’ve been swallowed by a hole with no way out.
This tender graphic about helping friends when they can’t find their way out really hits home. Thank you to author James Norbury of Big Panda and Tiny Dragon for the simplicity and beauty in this special piece.
Change, Grief and Duchenne:
Togetherness
My kids and I stumbled upon this illustration by James Norbury a while ago while reading his book Big Panda and Tiny Dragon . As I read the caption aloud to them, all I could think about was the experience of the Duchenne journey.
I truly believe that the illustration below depicts one of the greatest gifts that anyone could give to the individual with Duchenne and his or her family, especially during one of the many periods of grief.
That great gift is simply togetherness.