Learning BSL can bring out strange behaviours. Recently, I have caught myself not just signing to my husband and child, but also to our cat – Sox. Upon confessing this behaviour to my husband, he sheepishly confirmed that he has been doing this too. … Read More
Toni Morrison, a nobel prize winning novelist once said ‘you need a whole community to raise a child.’ She raised two children on her own whilst winning constant acclaim for her writing. She has my respect. I have one child and I honestly don’t know how I would have got this far without my husband, my wider family, my neighbours and my friends. Last weekend I added local business man and total strangers to that list…. Read More
Coming back into the lounge at tea time to find Smiling Flower carefully picking out strands of spaghetti from her bowl and gently placing them one by one in her hair…. She loves spaghetti and seemed to want to keep it there all evening…… Read More
This week, my husband and I celebrated an anniversary. Seven years since our first date and four years since our engagement. It was a glorious spring day – sunny and warm – just like the day seven years ago when he took me walking in the Chilterns before nervously holding my hand in a local pub… … Read More
My brother took this picture. He called it ‘and the fog rolled back’. Ten days ago, Pete, Smiling Flower and I, attended the first ever UK CHARGE conference. We drove there feeling nervous and tired. We drove home feeling challenged, equipped, fired up, reassured, emotional, amazed at those we met… and more tired! Overall, for me, it felt like some of the fog that has surrounded CHARGE rolled back.
There had been a day for professionals before we arrived. One of the speakers told us what the professionals had said about our children: they are bossy, determined, unique, funny, sleepless, stubborn and inventive in making the world work for them… Apparently, children with CHARGE have similar personality characteristics and the observations of the British professionals reflect the CHARGE behavioural phenotype.
As she talked, I sat in my seat, breathed out and relaxed. They were describing smiling flower. We belonged here.
There were over 60 children at the conference. Each one we met and talked to was unique. No two children had a similar presentation. Some had very severe difficulties, some functioned very highly, but they were all sparky. I had been worried that we wouldn’t fit in as I was aware before attending that smiling flower had less physical problems than some of the kids. But the whole atmosphere was of acceptance, inclusivity, and encouragement to see the potential in every child.
A particularly helpful seminar was by Timothy Hartshorne, a lecturer in psychology at Michigan University who has a son with severe CHARGE syndrome. He talked about the experience of being a parent and gave me permission to feel all the stuff I push down trying not to feel. My favourite phrases: ‘normal is a setting on a washing machine’ and ‘courage is not denial but can look like denial to other people.’ He said it would help to live this as a marathon because we wouldn’t last if we tried to sprint this race, that the biggest thing we could give smiling flower was encouragement. He was very understanding, tender and compassionate. A great role model.
I found myself reflecting on the phrase ‘you can choose your friends but not your family’. At the conference I felt I had met my CHARGE family. I didn’t choose for CHARGE to be in my life. I wish Smiling flower didn’t have to overcome its complexities. But the CHARGE family I met were inspirational and I am very grateful to have met a group of people who will instinctively understand and walk this road with us.
A couple of weeks ago I had a very vivid dream… I dreamt that the check-out girl at Sainsbury’s had learnt sign language. In my dream I was incredibly excited and happy about this. Now smiling flower and I could go to the shops and she would be able to talk to someone, even though it would only be for two minutes whilst the groceries passed through the scanner.
When I woke up I felt sad about my happy dream. I think because I thought about how isolated we can feel, bringing up our little girl in a place where so few speak her language. It seemed a bit extreme, in the cold light of day, to be so excited about a check out encounter that would be so brief and not very frequent. Especially as they have now introduced ‘self checkout’!
Later that week I met Richard who runs a very unique art cafe and gig venue (The Drawingroom) in Chesham. I wanted to ask him if it would be possible to hire out the Drawingroom for a gig to raise money towards our level 2 BSL fees, which will be in excess of £1000 for us both. I felt nervous going to meet him. I hate asking people for things, being shy and far too self reliant for my own good. Anyway, it was worth the trepidation; I came away amazed by kindness. Richard is totally on board and has been incredibly generous with his venue. He also believes he has enough contacts to help us well on the way to our target. Smiling flower, oblivious to the tumult of emotion whizzing through her Mum, stood stroking Taya the Drawingroom labrador; her first proper and incredibly positive experience of a canine friend.
As we walked away I felt elated. I knew the Drawingroom was special, which was why it was top of my list. But Richard has gone completely beyond what I was asking for. Reality far surpassed my dream… I’ve only lived in Chesham 3 years but this makes me feel part of community in a significant way.
If you are local to Chesham, and would like to experience something decidedly different on a Sunday afternoon watch this space. There will be music, signing, maybe poetry, maybe some awesome drums, BBQ and more… 15th May.
This weekend I have been trying to look at the shafts of light that fill the spaces between the clouds. My own take on silver linings… Happy thoughts that hopefully will give me Peter Pan wings this week.
If it wasn’t for smiling flowers insomnia I wouldn’t have been up to see a slither of moon peeping through the trees, before the sun rose and washed away the intense silver light.
If it wasn’t for her quiet presence I wouldn’t have been able to have lunch with her in the flat in Woolecombe whilst listening to the waves crashing outside the window.
If it wasn’t for her deafness we wouldn’t have a child who could sign at least 40 words before she learnt to sign ‘no.’ I love that her first ‘word’ wasn’t ‘no.’ Sometimes she shakes her head with a mischievous little smile when she is doing something she knows she shouldn’t, like eating her shoes.
We also wouldn’t have given her a sign name which reveals so much of who she is and the mark she already makes on the world.
Because she is deaf we don’t have to listen to awful nursery rhyme CD’s on long car journeys. This is a real bonus.
If we hadn’t struggled we wouldn’t know the love and support of so many people who have traveled this bumpy road with us.
Maybe because it hasn’t been easy, I am acutely aware of the absolute and unending depths of my love for our sleepless, signing, smiling flower.
Lent starts on Wednesday. I am going to be following Brian Drapers Lent 40 series (he’s on my blog roll if you are interested). In his words: I write a series of 40 original e-mails ‘in the moment’, day by day – designed to help us all, in the hustle of life, to build a little rhythm and ritual into our often unreflective lives. Sometimes, these ways of being stick. And life becomes that little bit more vivid.
I am hoping it will help me keep gazing at the shafts of light…
The Bright Field
by R. S. Thomas
I have seen the sun break through
to illuminate a small field
for a while, and gone my way
and forgotten it. But that was the pearl
of great price, the one field that had
treasure in it. I realise now
that I must give all that I have
to possess it. Life is not hurrying
on to a receding future, nor hankering after
an imagined past. It is the turning
aside like Moses to the miracle
of the lit bush, to a brightness
that seemed as transitory as your youth
once, but is the eternity that awaits you.
I am reading an amazing blog at the moment: http://www.thejellychronicles.blogspot.com Mason who is the main man of this page is not doing so well, he is a real fighter but has a lot to contend with. So it isn’t uplifting in that sense and yet I am drawn to it and feel very moved by the courage of his mum. By comparison, smiling flower has had little to contend with. It leaves a feeling that we need to be eternally grateful for our lot and find the positives in every day; and also that this should be reflected in the musings here… But isn’t there always someone worse, always someone better? Don’t we all have to learn to sit in the middle of some sort of continuum?
Recently, both Pete and I have been feeling fairly flat, that life is harder than we’d hoped. We enjoy our BSL lessons but have reached a certain plateau with smiling flower. She clearly understands most of what we say, signs a lot of it back to us, and leaves us feeling we need to find new things to talk about. It is hard to be spontaneous in a language we are so new in – it takes real effort every moment we are together. It is also very different – a foreign way of expressing ourselves. Someone said that you are never truly yourself in a second language. I wonder if this is true. It feels devastating to think that my daughter will never experience the true me, because that me is an English speaking poet soul, to whom words and the sounds of those words mean so much. Whilst I recognise the beauty of sign language, I grieve the ease of expression there could be.
It also hasn’t helped that since Christmas she has had a vomiting bug, chest infection, ear infection and now is topping it off with a dose of the common cold. Add to this a virus ridden husband and it is no wonder we are drooping a little at the knees. So I don’t have many words. Feel a bit blogless. I’m sorry if you’ve wondered what we’re up to. Hoping that I have a few more words soon…
In the past week, Smiling flower’s imagination has properly launched. Her speech therapist says that imaginative play only develops once there has been a certain level of language acquisition. So, as we are all learning a new language, we are thrilled at this development. Wonky donkey, rabbit and vibrating polar bear have all been treated to chocolate biscuits, banana and a variety of invisible foods during our pretend tea parties. We have had many cookery lessons which have necessitated much stirring of saucepans (personally I think we were making jam). Then at bathtime poor Upsy Daisy has also been forced to perform ever more frantic dances in the bubbles. The smile on smiling flower’s face, and the excited curling of her toes as we sit and play, has been a joy to see.
Particularly this week. This week it is 14 years since my Dad died. Some anniversaries have been very hard, some have passed almost unnoticed. But this one is a pensive one for some reason. I think, the more smiling flower grows into herself and reveals her personality, the more I am able to see little bits of Grandad Trevor shining through.
Grandad Trevor had a vivid imagination. He wrote poetry and often seemed to be off inside his head, thinking about something very different from whatever was in front of him. He also loved the outdoors and the wild Welsh mountains. Pete and I often comment that our girl is a Welsh girl at heart; she too seems to love the fresh air, the wind and the wide open space. And then there is the matter of giggling. A friend once said that her lasting memory of my Dad was his jolly giggles, which surprised me at the time. But, on reflection, I can see the truth in it. I was driving home yesterday imagining my Dad learning sign language. He had a great capacity to indulge silliness on occasion (a core skill for BSL beginners). I had a lovely image, for a moment, of him and smiling flower giggling over a fun sign… I sometimes hear something of him in her mischievous ripples of laughter.
I love you Dad. I hope one day our imaginative, giggling, wild mountain girl knows you through us, and loves you too.
“I met in the street a very poor young man who was in love. His hat was old, his coat worn, his cloak was out at the elbows, the water passed through his shoes, – and the stars through his soul.”
Victor Hugo quotes (French romantic Poet, Novelist and Dramatist, 1802-1885)
Smiling flower loves hats. Her Daddy has a ‘weird fish’ beanie which she loves to pull up and down. She will even put it on her own head but watch out if you try and place it there… However, in the next few months she is going to experience a hat challenge. Or more accurately, a helmet challenge.
I had a lovely email after Pete took our girl to physio the other day: It was a joy to see her in clinic yesterday. She has made so much progress, and it was extremely cute to see her moving her head left and right at every step she made. I spoke to your husband about the possibility of a helmet for your daughter. Lovely until the last line anyway. Its not that I had ever thought about it, but now it is abundantly clear that I don’t do helmets and I feel a huge resistance to this idea. Of course, it is much better for smiling flower to protect her head and her retinas. It is much better that she has the freedom to fall over and learn how to save herself. But I am not relishing this addition to our ‘out and about’ look… When I looked into it, I found that there are some cute versions and one the being recommended was even featured on the Apprentice! This is what it would look like:
When I was a teenager I had a great hat. It was black with a rim and I wore it at a jaunty angle and felt extremely cool. Nowadays I have let my sense of style slide and just wear a beanie when its cold. But this could be a new beginning for smiling flower. Hats, it seems, are a force to be reckoned with, the beginning of a journey into feminine power…
A hat is a flag, a shield, a bit of armor, and the badge of femininity. A hat is the difference between wearing clothes and wearing a costume; it’s the difference between being dressed and being dressed up; it’s the difference between looking adequate and looking your best. A hat is to be stylish in, to glow under, to flirt beneath, to make all others seem jealous over, and to make all men feel masculine about. A piece of magic is a hat. ~ Martha Sliter
I don’t know if smiling flower will also be cocking a hat over her beautiful blue eyes as a teenager. But I do know that life with her is like going on a character improvement programme. Truthfully, if they had no previous experience of it, I wonder how many people would have shied away from talking to a deaf person, or would have tried not to look at the kid with the kwalker but would have sneaked a curious glance as they walked past. And would they have presumed that a kid with a helmet on was epileptic or self harming? I was all these things before my daughter came and transformed my outlook, my understanding and my empathy. The stars definitely shine through her soul.
Thanks little one. I think I might just go and buy a hat to celebrate…