Tuesday, May 26, 2015

Chance Meeting

A couple spoke to Eilidh today.
They had watched her whizz round and around.
"What a fabulous chair you have!"
A silent grin spread across her face.
"And it goes up and down!"
She looked so cute and coy.
"Our grandson has Duchenne," they said.
"Eilidh has spinal muscular atrophy.  It's a neuromuscular condition just like Duchenne."

We got talking and I shared the time we moved from buggy to wheelchair and how suddenly, as a family, we became so conspicuous with the reality of Eilidh's disability visible to one and all. Their family had experienced something similar too.

I asked how long he had been diagnosed.
"A little over a year I think. Maybe..."
(Early days; such early, tender, raw days.)
I tried to reassure them, "The pain does ease with time.  It never goes away, but it eases. Tomorrow is our five year anniversary.  Our children bring joy to our lives, no matter the diagnosis."

I talked of my blog, my work with MDUK.
"Does the charity cover Duchenne? I don't know if they've been in contact with them. I can ask, but sometimes it's like walking on eggshells..." 
(Yes, it can be, but it's better to talk...)  
"Do you have a card we can have?"

A full throttle whizz around; a cheeky little girl in her wheelchair. A couple watching, thinking of their grandson, reaching out. I hope they left a little more hopeful.  I hope they'll get in touch.


Midlife Singlemum said...

I hope they get in contact too. Such a cheeky grin on that face. xxx

Little Mama Murphy said...

I hope so too. I'm sure it really helped them to talk to someone a little furtyher along that road.
Eilish looks fabulous by the way - so grown up.

Looking for Blue Sky said...

Such a wonderful photo that captures your beautiful happy mischievous daughter who is clearly enjoying every second of life :)