A Midnight Clear

Every year I find myself time travelling over our box of Christmas decorations.  All those handmade kid decorations and the sentimental ornaments that take me back to times before.  There are the annual ornaments I always received from my Mum, a tradition now adopted by my sister.  There are the ones from children I taught, and older ones too from so long ago I barely remember their origins. Garlands and baubles and hand embroidered love hearts.  Toy soldiers made from pegs and pipe cleaner reindeer. Jingle bells from the first year I was married and a tiny wax baby Jesus nestled in a walnut shell.  I watch the kids unwrapping each one and remembering, smiling as they feel that special Christmas magic.  It’s a time of year I adore.  The carols play us the lullabies of yule and this mood, this palpable feeling is the reason why I love this season so much.  Family, love, memories, togetherness.

Only this year, I can’t manage to trim the whole tree.  December First happens to have been a very big day this year and we are all a bit tired.  The children lift and bring me each decoration and my arms shake as I hang them; just so. I push myself far beyond my capabilities. My husband puts the kids to bed and returns to find my head in my hands.  I am spent.  It’s not just the emotion of Christmas.  I literally can’t move my legs.  The weakness and pain radiates down my legs pinning me to the chair.  I stare at the tree.  The lights blink through the blur of my tears.  It’s Christmas, but not as I know it.  I don’t understand this pain I am having, the weakness and trouble with walking. I am afraid of it. It’s not a usual Dysautonomia symptom.  Walking is not mediated by the Autonomic Nervous System, but the Central. I don’t understand and I don’t want to even try. I’m just weary.  I am upset that even Christmas decorating is now tainted with the wrongs of this body.  I try to make the tree come back into focus.  It’s beautiful.  It’s not finished… but there is tomorrow.

My favourite carol floats through the living room. My tiredness overwhelms me.  Time for a silent night.

I need a silent night, a holy nighttoHave you heard this beautiful carol?
It’s the perfect Christmas-carol-for-mummies.
Here’s the link if you’d like to have a listen.

Have you been trimming your tree, too?

The Wide Blue

Oops.  I really AM having a break from the blog, but I just had to share this with you…

I’m listening to  ‘John Dunbar’s theme’  by John Barry, far above the Pacific Ocean.  The evocative, heart stringing melody pulls me into a contemplative space. The clouds out my window look like snow drifts on blue ice.  It is so beautiful.  My heart aches with the beauty of our world. I can barely understand how it is that I am flying through the blue atmosphere of this planet, eye on the curve of the horizon. Feeling so far from lost. Home in the clouds, in the air.  On my way.

Screen Shot 2014-10-17 at 6.07.59 pm

The first time I remember being in a plane was when I was around seven years old. I was clutching hold of a single rose, struggling to make sense of the painful lump in my throat.  If I close my eyes I can feel the shape of the cellophane stem in my hands, I can feel the sadness that overwhelmed me.  My best friend Dana had just said goodbye to me in the airport and given me a rose. The singularity of that flower made me realise; I was leaving the safety of being of ‘she and me’. It is the first time I understood the loss of friendship.

The strains of losses, goodbyes and farewells fill the spaces in airports and airplanes. Almost every soul on board this flight must have said goodbye to someone, somewhere.  There are heavy hearts and happy hearts, hopeful hearts and the heartbroken.  We are bound for a new destination and whatever might come.  I wonder about the stories they hold, all these people.  I wonder who they are.  What are they carrying on board today? Not their luggage; their heart burdens.  Are they as fortunate as I am? Do they have a compass for home? A warm nest of their own? Will someone be missing them tonight, reaching out their hand to find cool sheets where their warmth used to be?  Will someone be wishing they could hear them breathing, wishing they could rest their cheek against their back?

I sometimes feel so unfortunate.  I see how things are changing for me, how much less mobile I am, how much more I am struggling. And it makes me feel a strange combination of desperation, frustration and sadness.  And then, here I am, looking out the window; the arcing blue sea shifting into powdery sky and I feel calm. Blessed, even.  I get to do this. See this. Be here and have thoughts and words and experiences.  I get to make memories with people I love.

I can’t give you all the beauty outside my window; I see it, but so many people won’t.  All around me eyes are closed to the view.  People shift in their seats, or resolutely shut their eyes to the gift just there, outside the window. You have a window too, somewhere there, where you are. Have you looked out of it lately? Taken deep slow breaths and let the beauty fill you up?  I quench the parched terrain of my sad thoughts when I look outward. Don’t look down, look out. Look up. Just, look.

Listen to this music. Come, get lost and found with me, out in the blue.

(…and just in case you are wondering, that friend and I are still friends.  We found each other again at 19, saw a bit of England and a bit of the Netherlands together.  And twenty years later, we email still.  Hi Dana!  True friendship is never lost).