Friday, June 10, 2011


If you are at all involved in the SMA world, you know sweet Brynlee passed away this week. Beautiful, vibrant Brynlee. Her journey was one of the first we began following when Dakin was first diagnosed with SMARD, almost three years ago. I remember watching videos of her sitting up and learning of all the neat things she was doing. She was just a little older than Dakin.

Instead of a funeral, Brynlee's parents will be holding a ball in her honor. I think that is a perfect, deeply touching tribute for a perfect, deeply touching princess of a girl.

I wish I had words to help erase the pain Brynlee's parents and family are feeling. I wish I had a window to whatever follows this life so I could show them and in some way ease the hurt. It is at times like this that I feel the most powerless against this form of disease...I wish that in hating it I could somehow make it stop its destruction. That it had some kind of soul so I could maybe somehow make it stop by pleading with it, or threatening it.

Despite what it does to the body, SMA never touched Brynlee's spirit. Of that I am certain.

Fly, sweet Brynlee. Hope to see you in the sky, butterfly.

Fly, fly little wing
Fly beyond imagining
The softest cloud, the whitest dove
Upon the wind of heaven's love

Past the planets and the stars
Leave this lonely world of ours
Escape the sorrow and the pain
And fly again

Fly, fly precious one
Your endless journey has begun
Take your gentle happiness
Far too beautiful for this

Cross over to the other shore
There is peace forevermore
But hold this mem'ry bittersweet
Until we meet

Fly, fly do not fear
Don't waste a breath, don't shed a tear
Your heart is pure, your soul is free
Be on your way, don't wait for me

Above the universe you'll climb
On beyond the hands of time
The moon will rise, the sun will set
But I won't forget

Fly, fly little wing
Fly where only angels sing
Fly away, the time is right
Go now, find the light.

-Celine Dion, 'Fly'


ever hopeful mummy said...

a beautiful post despite the raw emotion and heartbreaking sadness. my heart goes out to brynlees parents and family - they are in my thoughts and prayers.

Zoey's mom said...

Sending prayers of peace to your sad heart,once again Devon.Knowing that with each loss,a little piece of your heart leaves with these precious ones.