7p22.1

Chromosome 7

In the beginning was the Word

L, O, V, E

transcribed as A, C, G, T

adenine, cytosine, guanine, thymine

Four nitrogen bases to compose a three-billion note sonata

A, C, G, T

the hue of her skin, her rosebud lip

heart fluttering on an ultrasound scan

A, C, G, T

the cosmic typewriter skips a beat

A T

G C

a microscopic pause

missense in the melody, an unexpected note

A, T, G, C

she dances to the music

dances to the beat of her own drum

she runs with open arms and heart into the world

our little love

L, O, V, E

A, C, G, T

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It’s been a rough couple of days with Little One.  All kinds of reasons, including the snow which we had all eagerly anticipated – yet completely unsettled her.  Snow is a very rare thing in Devon… My rosy image of a family snow-day met with the reality of both of us parents trying to squeeze in working from home while helping Little One understand a totally unpredictable day.  There have been a lot of tantrums.

A moment of joy teaching Eldest to snowboard in the park was cut short by the embarrassment of Little One lying on her back in the snow screaming because it wasn’t her turn.

Tonight I needed to revisit my Sigur Ros Heima DVD.  I needed the bittersweet harmonies and the simple beauty of four musicians totally in step with one another.

Memories flood in when I watch Heima.  Summer 2008 at Greenbelt open-air cinema,  Eldest asleep in a warm bundle of blankets on my knee.  Brandy hot chocolate, and fresh doughnuts as we watched the Icelandic community come together through music.  Feeling overwhelmed with love as I cradled my daughter and rested in my husband’s arms.

Still raw from leaving the church, yet feeling flutters of hope that something like Heima (‘Home’ in English) was what Church could look like outside the walls.  The scene filmed at Gamla Borg  still makes me cry – the simplicity of young and old gathered to share food and be immersed in music.

On grief and gratitude

grief_gratitude

Image from Grief to Gratitude blog

To Little One

It was your 7th birthday last month. Facebook popped up a picture of you, 2 years old in your yellow corduroy party dress (you might not even know what Facebook was if you read this in the future). You had a little sprout of hair tied up in a hair bobble. Even then your fringe liked to fall in your face! Your blue eyes were as beautiful and expressive then as they are today.

I hope you are able to read Mummy’s blog in the future. I know you get cross sometimes when words are so hard they make your brain hurt. I promise we will keep playing musical bumps with your word cards, and laser tag – remember how you love dancing to Minions music and the Trolls soundtrack? We are so proud of how hard you try and how much you love it when we read poems and stories to you.

You had a pizza making birthday party last month – do you remember? You and your friends loved squeezing the pizza dough and rolling it into big ropes to bash on the table! There’s a pang of sadness sometimes that we don’t have pictures of your first birthday party – because we didn’t have one. I’m sorry. Mummy was still so very poorly. I’d love to have made you a cake with chocolate buttons and one pink candle to blow out. But now I get to make you Rapunzel cakes, and rainbow meringue cakes (your big sister is very good at those unicorn poop meringues isn’t she?)

Almost every night-time, Daddy and I pop into your bedroom before we go to bed. You sleep so beautifully! Did you know, sometimes you pucker up your lips in your sleep – just like you are feeding from mummy, or from your bottle. I really missed feeding you when I had to go to hospital. I love it when you lay in my arms even now you’re 7, just to pretend that you’re a baby again.

You love to carry your baby doll in the sling we bought you for your birthday – do you remember it? Grandma and Grandad bought you a talking baby doll who giggles and sounds like she’s saying your name sometimes. She looks so snug when you hold her on your chest. You’ve always loved pretending to be a mummy. You kiss and cuddle your baby dolls and you talk to them in a soft sing-song voice. I love to watch you play ‘babies’ – because I think maybe you learned how to be a really good mummy from me, even though I was poorly for a very long time. That makes me feel very grateful.

You love your new baby cousin Maisie so much. I wonder if you’ll have a chance to feed her some mashed up pear in the holidays? I know you’re very excited about that. Sometimes I have an aching heart, hoping for a lovely person for you to be a parent with in the future. It might be harder to meet a special person when you have learning difficulties… but we’ll find a way. Daddy and I think we might like to be called Pops and Nanna if we are grandparents when we are older. Won’t that be funny!?

Little One, our hopes and dreams for you remain the same. That you know you are deeply loved, that you find fun and purpose in your life, that you have people to support you through sorrow and joy. Love you forever.

xxx

An Inclusive Nativity

This is my dream

Angels with Asperger’s flap their hands

The audience hang on the words of stammering staccato narrators

Gabriel’s port-wine stained face is radiant with joy

The troublesome Holy Couple lay their babe tenderly in the straw

And we feel As One.

nativity

I know I’m not going to be alone in the community of special needs parents who feel a little heartbroken during these last weeks of term.  The empty school tray at Christmas Post collection time.  The Christmas cards that perhaps can’t be written independently.

I can’t help but feel that the nativity play could be such an opportunity to model to our children than no-one needs to be marginalised.  After all, isn’t that what the humility of the stable points to?  Kings and shepherds, Gold and sheep.  All are welcome.

I’m writing while it’s still raw.  I left the school hall having watched my last ever nativity play tonight. Only that wasn’t the reason for the tears.

Little One was a sheep, slender bare feet peeping out from her black leggings.  They’d lost her sheep headband that she had made at school.  She hadn’t been able to tell us that we were supposed to make her another one at home.

She is positioned by the door, TA close to hand.  We strain to see her enjoying the songs she’s been singing in random lines over the dinner table or in the car.  Her moment… up onto the stage, we try to catch her eye.  The Year 1 sheep come to the front for a song, but the Year 2 sheep don’t join them.  She sits beautifully, arms crossed, back upright.  Glancing up at the stars above her, awaiting the cue.  She has a chance to ‘baa’, sitting dutifully with her shepherds.  Time for the next number, she leaves the stage.

There are parents of other sheep out there tonight.  Little One wasn’t the only sheep singled out to miss an opportunity to sing or dance on stage.  But in this last year she’s learned so much and is able to be part of a performance, to stand shoulder-to-shoulder with other children, to remember a few of the words.

It would have been so precious to us if she had been given the chance to “access the curriculum” in this – an area where she has strengths and abilities.  Love of music, intrinsic rhythm and the biggest smile you have ever seen on a sheep.

I’m keeping my dream.

 

 

 

 

 

Transition

During childbirth, there’s a phase called transition.  You move from riding contractions to the urge to push.  Often, this is a time when you feel utterly convinced that you can’t do this any more.  That your body wasn’t designed for this degree of effort.

I remember the sips of cold orange squash my husband gave me through a straw as I hit the wall during my own transition in labour just over 12 years ago.  The sweet, icy energy and the tenderness of a husband in waiting.  I stepped out of the birthing pool and into the bathroom of the delivery suite. From there my body took over.  Determination, resurgence of physical strength, intense focus.

And then she was here.  The moment of tearful announcement from my husband:

“it’s a little girl”

Holding her, wrapped in a towel, eyes dark as ink.  Our new life begun.

liminal

I find myself in another ‘liminal’ space now that the little bundle has begun her life as a high school student.  On the boundary between being needed and being in the way.  Between parent and confidante.  Sometimes the ‘cool mum’ who her friends like to be around, sometimes completely out of touch.

It’s definitely been unsettling, but most days it’s kind of fun.  Our new life begins.

 

Dhal, happy tears and sequins

Yesterday was the last day of the girls’ summer holidays.  We planned an outdoor pool swim at Exeter University (Little One in her wetsuit!) and a vegetarian lunch in the city centre.

Sitting in Herbies cafe I felt a rush of emotion. I looked at my girls and blinked away the happy-sad tears. This was the space where I had begun to truly find my love for Little One three years ago. The space in which I became a mummy again.

Back in those days we would arrive early, after the “Jumping Beans” dance session at Exeter Phoenix Arts Centre. The same waitress would greet us with crayons, a colouring book and a smile. She would bring a red wooden booster seat which made Little One feel so special. I would have the lunch special: warm, comforting dhal spiked with ginger and chilli.

Yesterday we had other plans for the dhal. In our car park we had found a young girl curled up on flattened boxes, shrouded in a grubby white blanket.  My girls were very shocked and upset, so I suggested to Eldest that we could ask if she’d like us to bring her some food after our lunch. We took back a warm foil box, a paper bag of fluffy naan bread and chatted for a few brief moments.

I can’t even begin to imagine the circumstances that had brought her to sheltering in a car park.  On the way back to the shops, I held my girls’ hands that little bit tighter. When we returned we were relieved to see another stranger sitting down with her and talking about her appointment with a housing officer later in the week.

Shopping for an Autumn outfit for each of the girls, I smiled at their different personalities evident in their choices. A ‘Millenial pink’ batwing cropped jumper with shoulder studs for Eldest (when did pink re-enter her consciousness?) I didn’t tell her that batwing was a favourite of mine at her age!  A maroon sweater with gently gathered shoulders and a heart made out of reversible sequins for Little One. She spent a happy half an hour smoothing the sequins up and down with her hands. Deep, sparkly gold in one direction and muted, matte gold on the other.

On our way home I dropped a card at Herbie’s for the waitress we met three years ago. I wanted to thank her for being a special part of my recovery. For helping me to build memories of myself as a good mummy, not a depressed one.

Thank you, Herbie’s – we will be back.

Mother & daughter

heart

We share the same hands

Elegant fingers

Nails so tough they’re brittle

One ruby-encrusted, one with a single sapphire

One as yet unadorned

Except for the chipped plum nail varnish

Our hands have

Brushed away tears

Smashed stained-glass windows

Thrown broken heart pebbles

Coloured and stitched

Finger painted and planted seeds

Sliced and stirred a thousand recipes

Held on tightly

Held tightly on to each other

 

 

Sanctuary

Once again I find myself speaking through the lens of Nashville, but really – this says it all for me at the moment.

(In the spirit of avoiding plot spoilers I have chosen to share a cover version of this beautiful song.  If you’re in the UK and haven’t watched season 5 of Nashville, promise me you won’t Google it or follow any of the other YouTube links in the sidebar!)

As a mother, I’m finding myself in a season where I need to be a sanctuary for my girls, and especially for Eldest to be her safe place.  Being a sanctuary calls on me to shift my priorities, to seek the way of peace in my own life and to bring beauty to a very ugly situation.  Protection, justice, compassion.

I’ve cancelled work this week

I’ve bought mini-Oreo’s for the walk home from school this week

I’ve wept this week

I’ve taken Eldest with me to swim in the sea this week

 

I’m so thankful for the space to find my own way to be a refuge, and I guess I just wish that all kids had a safe place to fall.

 

 

Squiggly

Life sometimes feels very squiggly when you are in a period of remission.  You’re busy trying to rebuild life and pick up old threads but there is messiness in trying to find your equilibrium.

Recovery_reality

I used to feel quite scared of the scribble, the days when out of nowhere I don’t feel like getting up again or I find myself mind-busy and frazzled.  But as you look at the featured image for this blog don’t you think that in some ways that the messy line is actually quite beautiful?

Quite a few things have been squiggling me lately (but I’m learning to accept them as part of the beautiful tangle of life and recovery).  I was offered an ongoing role facilitating mums’ mental health courses from September this year.  In many ways it’s the role I have been dreaming of – but I knew I had to turn it down at this point in my own life journey.  I felt torn between guilt and relief as I sent off the email to say no.  No is a hard thing, but a precious thing too.

Little One has been providing us with some very tangly challenges.  The shift from winter to spring has really unsettled bedtimes and we have had more than a few nights of really screaming at the top of her voice “It’s day not night! I don’t go to bed in the day!” There have been moments of parenting genius like digging out the ‘Sunshine at Bedtime’ poem from Shirley Hughes Out and About collection. There have been many more moments of wondering what on earth to do and the pain of listening to an angry, crying child behind the bedroom door who is so very, very tired but doesn’t understand.

Eldest is going through her own messy time at the moment too and I’m there helping her to untangle some of it. There have been many cups of tea and slices of cheese on toast at the end of another upsetting day at school.  Friendships for pre-teen girls have always been challenging and fraught, but it doesn’t make it any easier knowing this when your precious girl is in tears as she tries to be her authentic self and gets knocked back.

I had something of an epiphany in the midst of the tangles.  I’ve been searching so long for that time I go “back to work” and I’m healed, whole, a functioning member of society again.  That time when I’ll have the career success I imagined when I headed off to University back in 1994.  But the thing is I already have a career.  The most important, draining, fabulous, meaningful work I could have imagined.  I’m a mother to Little One and Eldest.  The paid work is going to have to continue to take a back seat, as much for my wholeness and well-being as theirs.

Glorious mess