Public Private

Stuck on a tube train  last week I was struck by thoughts of how this blog must look to my big boy.
How he would react to it if he read it now or in the future?

I love my children equally, ferociously, and for many reasons the same and many different.  Which is kind of different to my Mum who strove and still strives to love us all the same and finds it hard to pinpoint what she likes better about any of us.  As if it would be a betrayal of her motherly duty to do so.  While I admire and love the equality in that, it's hard sometimes.

I also remember a moment when my sister commented me that I look at my boys differently and at the time I was defensive about that.  I now think she's right though, because I know there's a sense of foreboding and relief and intricate study when I look at the little one, and sometimes with my big boy, I don't know who's the parent and who's the child because he's so wise beyond his years.

One thing is sure though, that I love my children for all the joy and pain I feel and have felt, and through the momentous and incidental moments that life brings our family.

So I feel I'm balanced about this, but I don't know if this blog can ever reflect that.  Because here I write about me. Here is, by definition, about me trying to find a middle ground in all areas.  Yet because of who I am and how important the mummy bit is in me, my posts are often precipitated by them.
My boys.
And as a result of his jumbled chromosomes, one more than the other.

Reading back I have a latent worry that one child might appear not to feature enough. But also that a blog about overcoming challenges might make the other child think that that's all he is or was.

So for the record and to have a post for them to read first should we get to that point, here is what you beautiful boys mean to me.  I hope you'll know which one is for you as you read:

Your smiling cuddling joyful heart healed mine the second you appeared inside me. You are growing serious and I fear that you feel and know so much that by being open with you about the tough stuff, that I may have robbed a bit of your childhood. You are special and kind, strong and soft, confident and anxious, clever, brave and scared. You are my wonderful boy and I'm proud to be your Mummy and grateful for your magic healing ways.

While your story has bumps and trials and pain right from the start, that pain is often at the systems that make it hard and the people that don't get it. Sometimes at the things that make life a bit harder than it should be for you.  But never ever at your triumphs, your existence or your challenges.  You hold only joy, smiles, delight, heart filling warmth, pride and will always have my admiration for how you exceed all my hopes.

All I can ever hope to have given you both, above all else, is a love of each other . An appreciation of the lovely people I hope you meet and all the beauty the world has to offer, and a huge does of stubbornness and charm mixed just right to ensure a smooth path through.

here and now...

I was cementing this morning on my journey to work some thoughts that I've had for a while.  About how life is so cheap in many countries around the world and how lucky we are to hold it dear here.

How lucky I am to want to rub my child's head better when he bumps it, or put cream on a graze or lavender on his throat.

How lucky my children are to live each day limbs intact, walking to and from school where they will find people and institutions that want to educate, nurture and feed them.

How we live in a time where thankfully more of us manage not to lose our children in childbirth or soon after, unlike the generations before us when it was something that they just got used to and legislated for.  It still amazes to me to hear stories of the ones that didn't make it back up those family trees.

Even though I know where my family came from thanks to the diligence of older cousins and aunts and uncles on all sides,  I still don't really know how this soul in me got to be so lucky to emerge where I did.  Not in a war-torn African village, or a remote spot in between North and South Korea, or in a slum in Brazil.

The papers are filled with chaos and war in the Middle East and worse, the silent non headline-making facts of lives all over the world filled with a pain that the people there have long since questioned.

How lucky I am to worry about the nuances of the lives of my children, my husband, my siblings, my family.

I hope that one day I can do more than be thankful for what I have, and slightly guilty that I'm thankful that I don't have the lives that so many people around the world do.  Until then I'll continue to try to sprinkle my bits of sunshine and glitter when and where I can. 

Allow Me Some Repetition...

...because sometimes it seems that no matter what I do, no matter how clear, patient, heartfelt and generous I am of other's sensibilities, people still don't get it what this all feels like.  I am learning to express that this makes me feel very angry, upset and frustrated.

I've had a perfectly nice response to my very honest vulnerable outpouring about various recent events, but one message contained within has forced me into my cave, for fear of saying the wrong thing and making everything worse, rocking a boat I don't want to rock.

What do I have to do to explain that it's not just the medical that is or will be altered by my boys' genetic disorder? That the "faulty" genetic formula in every single cell of his body makes him by definition NOT the same as the majority of the population. How do I prevent the fact that everytime I hear from people who I hoped knew better that he is the same, I get less rational. 

When a child rages and cries, we tend to find a distraction.  So right now I'm distracting myself by reposting the first contribution I made to Different Iz Good that seems to say how I feel more safely.

I’ve been thinking about what my first post for this site should be and have thunk my way right here.

I’m Sara, mum to two wonderful boys, my youngest having 18p deletion, a rare genetic disorder.  Where my little man and some of his other 18p- buddies differ, is that (at the moment at least) he sneaks under the radar.  He walks, he talks, he looks like everyone else…so really he doesn’t seem to be different at all and he doesn’t have many of the negative effects that looking and sounding different can bring to a person.

What I have found out though, is that when you have a child who has a diagnosis, but on the surface seems to be the same as everyone else, the negative connotations about being different are still there, and still applied to him, but in a well meaning and topsy turvey way.

I’ve lost count of the people who’ve said “but he looks just like everyone else” or “you would never know there’s anything wrong” or “they met him and didn’t even know there was anything different”.

It’s always said in a way that I absolutely know is meant to make me feel good and I have realised it’s a very complex thing as to why it doesn’t have the desired effect.  What makes me feel worse about my under the skin horror of these comments is that it’s often said by people I trust and love – people who teach him, know him, love him, love me…and it’s quite complicated why it bothers me.  So if you don’t mind, I’m trying to work it out as I type.

Firstly I think I bristle out of loyalty to everyone out there who isn’t the same as everyone else.  Because saying to me that my child is the same, to try to make me feel good, feels like a huge betrayal to all of them if I take it as it’s meant, as a compliment.

Secondly because it makes the assumption that it would affect me in any negative way if he wasn’t quite this lucky and typical.  Because that undermines the fierce love that I have for him, and would have in equal measure if he was blind, deaf, dysmorphic in his features, in a wheelchair, unintelligable in his speech and so on…

Thirdly it also undermines the things that go on behind the scenes of his “normal”.  Behind the curly hair and podgy cheeks and the sparkly eyes and magic smile and the seemingly uber-coping Mummy.  The immune system that can take us by surprise, the concentrated learning that is endemic in our daily routine, carried out as subterfuge to all involved.  The physio that also slips into that routine, the constant checkups, the worry about all the things that his magic genetic makeup can and will bring to us, and the fear of everything I know.

Fourthly because if I allow myself, or anyone else to deny that he is different, rather than empower them through him to respond effectively to “different”, I am not doing what I was put here to do.  And I won’t be doing myself or him, or indeed them any favours at all.

Me and my boy are who and how we are for a reason.  I have always told him and anyone else who’ll listen that he isn’t the same as everyone else, but woe betide anyone who treats him as if he is.   Like it or not, our society is full of cruelty behind all the quiet good intentions of the good people who float within it.  People are squeamish about disability, about things they don’t understand and indeed fear in the depth of their souls for themselves and their families.

So if my boy right now can be a poster child for people who need help dipping their toe into the water of tolerance and understanding around disability, then I’ll take that as a clear wonderful mission for us, while he’s still “typical” enough to do it.

But do me a favour, spread the word for anyone working or living in the London area.  Watch out for pointless platitudes spilling out of your mouth, supposedly to make a parent, or sibling, or grandparent feel better about their affected relation.

Because that recipient might be me

And I might not be feeling as kind as I am now

thanks for listening and see you here soon

3 random thoughts after 10 minutes of browsing tabloid online sites

1) I'm very disturbed about the Aretha Franklin article saying how she's lost so much weight by cutting out hamburgers.  Now, I love Aretha, one of my faves, but this is a ludicrous article, contributory to the rot of the "famous people need to be thin in order to be a good role model" epidemic.  Aretha's family confirmed she had cancer not 4 months ago, she's just been hospitalised for some other "illness" and clearly, wonderfully is changing her life and habits as a result.  Do we really have to have a lecture about burgers vs salad and ignore all of the above for her "amazing" weight loss?  Sigh, the "celebritying" of cancer...I've seen it all now.

2) Joanna Lumley and Rosamund Pike are built from the same exquisite posh blonde beautiful mode.  (shh, don't think about the BAFTA "and the award goes to" memory, move on).  They have the same even smile, deep smooth tones, inspire the same reaction of "wow, I so don't look or sound like that" from me.  All I can think of is why hasn't anybody cast them as mother and daughter yet?  Maybe I should.


3) John Galliano.  Deary deary me.  Nuff said.

And a final pointless ramble on this post with no depth but that curiously makes me smile.....

I used my Burts Bees lipbalm on the way home last night and found my finger touching the metal of the bottom of the pot.  I grinned a huge grin because I try really hard to finish things rather than throw them away when I'm bored. 
Just like I try to wear my clothes until they fall apart and rarely buy anything new, despite my devouring of Style fashion magazine each week. 
Just like I enjoy using the stuff I can't recycle and can't bring myself to throw away for many strange and wonderful things.  So this morning I smiled when I opened the raisins to put on the kids cereal, and untied the sparkly elastic band I rescued from the tag wrapped round some chocolates we had, having recycled the tag and held back the band for later use.

Sigh. 

It's the small things that count

Kindness and Tears

I wrote this post on the tube last week after a particularly lovely meeting with a particularly lovely old friend.  In that meeting I felt the tap turn a little as my eyes welled up a few times during our conversation.  I felt moved to write about how I might go about taking on board his parting comment, and being kind to myself.

Walk at the pace you feel like walking as often as you can.
Let the tears trickle when someone moves you.
Accept the compliments you're lucky enough to receive.
If you must analyse what you did to deserve that compliment, do so by defining your part in this thing that someone admired.
Heed advice from people you instinctively trust.
If you don't have room in your baggage for this advice, store it somewhere you'll easily find it again.
And try to take your own advice if you're sure you believe that you give it in truth.
Clap and cheer to your heart's content regardless of whether the people around you are doing the same.
Take a long, deep, slow breath whenever you feel the need.
Identify the people you meet who can see into your soul and try to keep them in your life.
Believe in your own potential as much as you hope that others will.
Sing
Dance
Laugh
Enjoy the birds and trees and flowers
Hug your loved ones
Smile at strangers
Cook nice food and concentrate when tasting it
Write when the mood takes you, with a pen, a phone or a keyboard.
Try to embrace the constant movement of life and stop working so hard on that dam you've been building
Keep your softest part only for those who will value it.
Trust your voice and your heart

When I got home, all floaty and happy, I was brought back down to earth with a bump through tales of more behavioural mayhem with my little man.  A deep fury and impotent rage started to build at how the incident had been handled.  Mummy guilt flooded in, confusion as to what exactly had happened, fear at what this continuing pattern is suggesting and all kind of everything.
I guess with my soft bit having come up to say hello just a few hours earlier, I called my mum saying "please can you calm me down" which seemed to be code for "help me to open up" because I knew that simply having to talk to her on the phone would stop me squashing the threatened tears.

So I started to cry, and cry some more, to my mum, to my friend whose little boy had been at the sharp end of L's foot, quietly while Daddy did storytime with the boys, and later with my most welcome diarised therapy session. 

For nearly a week I've sat on the initial post, not quite sure whether or how to publish it.  But today it seems to work as part of a clear picture of my constantly changing emotions and I am glad not to feel ashamed of it at all.

Symbiosis

I walk past this image at least once a day in the park at the end of my street .  I could take a more direct route through to the tube station, but always find my feet walking me this way.  This morning I realised it was time to pen a small note to work out why. 

What I see here is intricate and interesting and kind of wrong in the middle of a park full of neat, planned and ordered foliage.  It strikes me every day and I have thought more than once about stopping the park keeper to ask how long it has been there?  Whether the ivy affects the health of the tree?  Is that a stump it’s growing on?  Whether they ever think about cutting it down and releasing the tree of its needy interloper? Or which of them actually came first?

But I never do. (Not just because I think the park keeper hates me, you see unlike the other gardeners there with whom I have a happy hello-filled acquaintance, he either avoids my eye with no great subtlety or gives me a grudging smile if he absolutely has to…Anyway, I digress)….

I don't ask because I just love it as it is.  Love that I don't really know whether it is a stump covered in ivy, opportunistically grabbing onto a tree that was unfortunate to be standing right next to it.  Or that the new tree was planted next to an old thing and they’ve developed a symbiotic need and love for each other.  I love that it makes me slow down, often stop, just to look across and down and up to see whether I can see the join.  Whether the tree is behaving as it should and marvelling at the sheer tenacity of that ivy. 

I even enjoy the comparisons I find and the images it puts in my head; about me, my son, his magic DNA, what a pretty way to see something uninvited become so very…necessary somehow.

However I mostly love that in this picture, the sun is shining down on them both, as it does on us all.  Plain or startling, boring or exciting, healthy or wizened, different or the same.  Not how anyone planned it I’m sure, but glorious nonetheless.

You can also find this blog post at www.differentizgood.org

Ode to Special Mummies Everywhere

I wrote this email in response to a plaintive cry from a dear friend from our C18 register.  An eminently sensible, intelligent and capable woman who had just returned from the latest in a long list of specialist appointments where it was down to her to direct the doctors who are supposed to have been watching her darling child carefully. And unfortunately down to her to point out that they'd missed something vital.

As I sped my way down the Northern Line from work to home I typed and grinned and hoped that this would cheer her up as much as it did me as I typed.
Thankfully it did.

Dear parent

Thank you for your post that our readers all understand and Gah! in support of. 

One small error however that we feel we have to correct is your assertion that you don't have any letters after your name, unlike the so-called experts you are faced with.

It is therefore our pleasure to inform you that due to sterling work as a member of the "special parent" group for almost a decade, you are now officially qualified as an orthopaedic, renal, cardiac, endocrine, audiology, educational, podiatry, opthalmic, pulminary, maxillo-facial, speech, OT, PT specialist. 

Please feel free to add any appropriate letters after your name (and a sneaky FU should you be having a bad day) and carry on the great work.

Exhaustedly (and sometimes inebriatedly) yours

Sara J, joint spokesperson for the "I don't Know How You do It" support group
Xxx

Hooray for friends and support groups, the kindness of strangers and caring people everywhere.  What would we do without each other.