Here's One I Made Earlier

Thought I'd show you all a little progression in my handling the new diagnoses.  Best way to do so is through a little blog post I did for the wonderful Different Iz Good.

Momentary Perspective Post for DIG

xx

18-22+2-6-7-15-19-x-x-

Yep, the title of this post is a jumble of numbers and symbols and I'm here writing to try to clear the mangled contents of my brain as a result of the above information.  So please excuse me if today's post is blurry and a bit erratic.
A few months ago we embarked on a new microarray test for my little man because of something the clever guys at Chromosome 18 had found on analysing our blood samples for the study.  At the time I allowed myself to be a bit fuzzy and confused and latently concerned until I could react for real at whatever we the test confirmed.  This is how I felt then Even More Special Post  and this is how I feel now.

First the Facts 
The microarray technology is now widely available and extremely detailed, and it has therefore shown that what L in fact has is 18p- and 22q duplication.  So a bit missing from Chromosome 18's short arm and a bit extra on Chromosome 22's long arm. Both of these are registered genetic disorders.  On top of that it seems that 7 other chromosomes have copy number changes going on too, although very small so not recognised as syndromes.  That means that throughout my miracle boy's body he's got too few copies of genes in some places and too many in others, and this doesn't necessarily balance out into a neat mathmetical equation.  If only that were so.

Then the Bad Feelings (imagine me stamping my foot red faced and tear-stained)
I mean, really??????? 
Wasn't one extremely rare-hard to understand-worrying genetic disorder enough????
Does he really have to have two phenotypes that I have to pay attention to and invisibly sew their archive of into my brain?????
Does he really have to be this frigging rare and unique and special?????
Have I really worked this hard and replaced so much of my brain storage on this one condition to now have to find room for another and try not to worry about what the other 7 little things might mean I have to know about???
Do I really have to go and search out another virtual family of lovely kind parents and say "Hi, New to the Group?"????
I don't want this.  I don't even wish I'd known it 4 years ago when we got the diagnosis.  I just, for the first time ever don't want any any part of it.

Now to force seeing the Good
If I'd known this 4 years ago with my head how it was then it's doubtful I'd have found my Chromosome 18 family.
Not one number or letter revelation makes an ounce of difference day to day for my amazingly fortunate and typically developing boy
I always kind of knew that he wasn't quite the same as the other 18p- kids and so I'm glad my instincts still work and there's a reason for those feelings of unquiet
Knowledge I guess is power and it's not like I was ever going to be able to relax and say "ok, mothering is all done now"
I'm not being kicked out of the organisation I have grown into.  I will still do my fundraiser, I will still sit on that management committee, I will still wear my badge with pride.
This propels me back to the world of the wonderful charity Unique and makes me more determined to do anything I can for Jeans For Genes in addition to sitting on their Parent Advisory Group.

But it does feel quite shit.  I do feel a bit wrung out when I allow myself to sit and write and think about it.

I'm going to refer to the lovely Wisteria one more time to try to end on something less black.
She's almost done revealing her amazing blooms.  The leaves will remain for longer but essentially she's about to recede into anonymity and tangled confusion once more. 
As such I hope that this riot of taste and smell and colour and confusion of these results will burn bright and then die down. 
However long it takes I know I'll soon be back watching my boy, mothering my boys and trying to balance the elements in my life and appreciate all the amazing things we have.

Thanks for listening.  Hope to be done with blooming soon.

Purple Postscript Blossoming Into My Day

I've written before in my Symbiosis post about the tree that I see in the park every day, the photo of which I had entitled Ivy Tree.

I've just come back to work from a lovely week off, plus bank holidays, where the park took on a new guise - a place for me and my boys to play and eat ice lollies and meet friends, and bike ride and run and have a blissful time together.  During which a change occurred that I only registered on my way to work yesterday...slightly dragging my feet, quietly trying to build myself back up and re-enter real life with a smile. 

So to my complete joy I was lifted by the Spring appearance of this my favourite tree and its guest, which has gloriously revealed itself as an amazingly tangled and currently flowering Wisteria.

I am so enamoured by this discovery that it makes me smile just writing about it.  On my way home last night I took a detour just to try and get a snap of it on my phone to add to this post.

What I love most about this discovery of a life cycle is that nothing really has changed, but wow, what a beautiful fanfare this tangled intrusive old thing is giving us as it blooms briefly before settling back into quiet anonymity for the rest of the year.

Being me, I'm finding something personal in that. 

I've been talking a lot on my time off about how amazing the age of 4 has been for my little man.  How healthy and strong and developmentally spot on he is right now and how utterly grateful and priveleged I am for him and us about that.
I'm finally off red alert, happily sitting on greeny amber.  My sister always said that I should look ahead to this time that she hoped would come, and be aware and ready to catch myself if my head and health started to slide a bit.
She was right, as always, because ironically I feel more worn out and down and old and tired than I remember feeling ever.  Lots of things feel like an effort.
Lovely Happy Sara is stretched very thin and possibly doesn't appear in the right places enough.
It's harder to motivate myself and detach emotionally from the niggles and the wrangles of those around me.
It's harder to eat well and sleep well and think about exercise and drawing and writing and the things that are good for me and that I like to do.
It's harder to be as loving in person to the wonderful man I share my life with as I am in my own quiet space.
And that's the hardest thing of all.

So these purple flowers are helping me to embrace the scent and brightness of all that's around me. I hope to bring that home with me a little more than I have.

Oh and to my new followers, and all the old ones.  Hello and thanks so much for joining me.  I'm ridiculously childishly excited to see you here and I promise to try and visit you all here a little more often.

Wish a Happy Flowery Purply Spring to us all
xx

Throw those curtains wide...one day like this a year will see me right

Yesterday I found myself in an emotional state, tearful, on the edge of sobbing for no real reason, even at work where this Sara barely ever comes out to play and work Sara in turn barely shows her face here.

I'd started the day taking L to the docs for another ear infection, having niggles with husband over having to do the grunt work by myself having been home alone for the weekend, and I was generally feeling over it all.

I enrolled best friends to help with this wobble and used their messages and texts for letting some tears dribble out. With my colleagues I was quiet, honest about not feeling very bright and breezy. I ate comfort food, I read things, I watched things, I tried to get inspired and over this fug of "dis" that had entered my office since last week.  Discouraged, disheartened, dispirited...all by the run of luck on one amazing project that I had possibly invested a little too much of myself in.

I had a random call from a random friend who helped me to draw a line back to when I last felt like this.  Back a few posts to the Kindness entry.  That helped identify the similarities and put a flag in in case the links become apparent (oh and if I'm honest, let me search and not find any obvious hormonal link)

So I got through the day and even achieved a little bit of something too.

I then went off to the O2 to watch Elbow in concert with my big brother.  We were spoiled as VIP's by my lovely friend so got to eat and catch up first.  We then got to experience this amazing proud Manchester band be funny and talented and in my case, lift my soul. 

As I watched I thought and thought about the person behind their "Seldom Seen Kid", my family friend, a missed and loved son of one of my "adopted mummy", best friend of my mum.  His memory and the tragedy of him no longer being here to experience all the other bits of him that I was too young and then too far to know, let me trickle out some more of those tears.

In contrast to the night before I came home late, fell asleep without needing to distract myself with reading, and apparently around 2am had a funny conversation with myself where I giggled and laughed.

Today I feel ok.  The packed lunch had been made by someone other than me, the medicine administered, the homework done, the shopping had been put away.  It isn't a red letter day by any means, but I did throw the curtains open wide just in case it was.

So thank you Elbow, thank you Bryan, thank you husband for pulling your finger out and thank you friends for hearing me

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