When Emlyn was first diagnosed with Rett Syndrome the flood of feelings utterly overwhelmed me. Grief, fear, despair, confusion, and sadness…profound sadness. Sadness that seeped into my bones and made them ache. Sadness that stole my smile, my laugh, my concentration. Sadness that ate me in tiny bites, or gobbled me up in large chunks. Sadness that permeated every hour of every day. It crippled me. Darren, desperate to help, reaching for a solution however temporary, asked if I wanted to go away somewhere, on vacation. Poor guy. Blood icy in my veins, I think I responded with something like ‘Can you take me on vacation to 18 months ago?’. Ouch. That was how I felt though, the present was a reality I couldn’t escape and I wanted to be somewhere, sometime before this. Every morning brought fresh waves of pain, and then guilt for being so selfish, indulging my own grief. I was just so sad.
You’re so sad
You’re so sad and it hurts
You’re so sad
But you’re stronger than you think
If you’ve read So Small, or Music is the Doctor you know I worked through those feelings eventually. But the sadness never fully goes away. It’s not the same, not at all…but it’s always there. Most of the time it sits in a corner minding it own business – I like to picture it reading self help books – but every once in a while it gets up, comes over, and without warning slaps me hard across the face. That slap stings. Like the time my friend Rita and I were driving through Oxford and stopped at some traffic lights. A man and his young daughter, she was maybe 6 or 7, were crossing the road and she skipped ahead before turning to call over her shoulder at him, they both laughed and SLAP, I could have doubled over from the pain of what will never be. This will never happen for Emlyn and Darren, not even if the cure for Rett Syndrome came next year. Emlyn will never share that experience with her father. She will never be 6 and skipping across a road, not ever. So even though I have faith in a different future for her, that is in the future…not today. She can never recapture these moments lost.
You’re so sad
You’re so sad and it hurts
You’re so sad
When you live with sadness, even if it’s quiet most of the time, your life changes to accommodate it, and so do you. You tread more gently so you won’t draw it’s attention. You hold your breath if you see it stir, anxious for it to doze back off. But after a while you sort of learn to live with it, not exactly peacefully, but in acceptance of it’s permanence.
I believe if you fall, you can get up again
‘Cause you’ve been through the worse in the past and you got up then
I believe if you fall, you can get up again
‘Cause you’ve been through the worse in the past and you got up then
These days sadness and I don’t interact much, even though I know it’s always there. Sadness is even helpful occasionally. It makes me cry, but those tears allow me to heal. It makes me take time to sort through my feelings, but once sorted they are often resolved. Sadness helps me to empathize and console others who are pricked by its thorns. Sadness is like ground pepper on strawberries – not the obvious choice – but the bitter makes the sweet worth savoring.
You’re so sad
You’re so sad and it hurts
You’re so sad
But you’re stronger then you think
song selection courtesy of The Gibson Newbie
