About Sara

I'm Sara Jackson, by day a TV executive and in my spare time a mum to two wonderful boys, wife to wonderful man, writer of kids stories and novice blogger. My youngest son Louis has a rare genetic disorder called 18p- and was diagnosed at 9 months old. He and his big brother Jacob are the lights of my life and the reason why I no longer have any existentialist angst, because I was born to be their Mummy. I will be popping in to Different Iz Good every now and then to think about all the things that this blog inspires, and scribble some words and thoughts in my quest to help the amazing Camilla make the world a better more tolerant place.

Thoughts from a Momentary Perspective

(Guest post by Sara Jackson Johnson –  Sara blogs at Sara in Between)

Sara Jackson and her Family

I’ve been struggling with some genetic results I received this week for my youngest, which told us that in fact he has two rather than just the one extremely rare genetic disorder. I’m pretty sure this takes him from one in few thousand to one perhaps on his own and while that’s kind of cool, it’s also quite lonely from where I’m sitting, not yet with the head space to learn the new stuff.

So I’ve done some hibernating, ruminating and finally blog-style tantruming and now I’m quietly trying to calm my feelings.

What has helped is catching up on an amazing TV programme shown here in England on BBC1. It was about surgeons at the Oxford Craniofacial Unit who use their skill to operate on children with disorders, malformations and life-threatening conditions affecting their skulls and faces.

These amazing professionals are leaders in their field, with extraordinary skills and techniques and the stamina to perform 7 hour operations. They are artists in helping to break and reform bones in the skull to allow room for brains, to help attach muscles to allow a smile reflex, to perform an extraordinary operation, then attach a brace and turn it a milimetre a day to gradually change the shape of a head and reduce pressure in the brain. What they do in these operations somehow didn’t seem gruesome, because of the humanity with which they held themselves, and the effect is nothing short of miraculous.
What is amazing is that they carry out their duties with an amazing humility and kindness, knowing that what they are doing is saving lives, but also helping people to look less different. To feel less obvious and blend a little more and as such have a slightly easier time of life.

What really struck me was something that the one of the surgeons said and understood about his patients. That parents struggle with these huge decisions while their children are young and have no choice when things are life threatening. But at some point these children become older and often decide that enough is enough. After countless operations the danger is over and only the cosmetic remains which is why some of them arrive at the conclusion that they are who they are. Job done.

I watched with admiration and tears at the humanity of these surgeons, the strength and pain of the parents and the amazing resilience of these kids.

Still days after I’ve watched them I’m carrying around the lessons that they didn’t know they were teaching me when they agreed to be filmed by for once what appeared to be an emotionally intelligent TV crew.

Difference and all it embodies is often far too complicated to put into words, but today to help me concentrate on renewing my perspective, I’ve enjoyed looking around the edges.

{Did you enjoy this post? Feel free to “like” it below and share with your Facebook Friends by pressing here! Thanks y’all -Camilla}

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Symbiosis

(Guest post by Sara Jackson Johnson –  Sara blogs at Sara in Between)

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 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.

Everybody’s Different

(Guest post by Sara Jackson Johnson –  Sara blogs at Sara in Between)

Why Different iz Good Exists!

Everybody’s Different by Sara Jackson

Every day I look around and this is what I see
Lots of different ways to look and different ways to be
Sammy’s only got a dad and Melly’s got two mummies
Emma’s face is often sad while Tommy makes things funny
Jacob’s hair is curlyish and Angie’s always sneezing
Louis gets up earlyish and Ella’s feet are freezing.
I find it odd the world around us thinks we’re all the same
As I think they might be looking without turning on their brain
So let’s celebrate our differences and how unique we are
And change the record, shout out loud and spread this message far
Because everybody’s different, it’s very plain to see
She and you and him and her and them and us and me!”

Recognising Different

(Guest post by Sara Jackson Johnson –  Sara blogs at Sara in Between)

Sara Jackson and her Family

This is my second post which has been brewing for a while, ready to be properly baked right here.

My little affected boy has a wonderful big “typical” brother.  As is often the way for siblings of any kind of non-typical kids, to Jacob, Louis is just his little brother.  In our family as you’ll see from our photo and my earlier blog, it’s a bit easier for him to think that at the moment because Louis does seem just like any other kid (even when he’s not) because the scary medical stuff just kind of melts away in the face of the normal day to day.  Despite this I talk and have always talked openly to both my kids about the fact that Louis has a rare genetic disorder.  That phrase and 18p deletion are drilled into both of their heads and come effortlessly out of their mouths.

Jacob is in his second year of Infant school at a wonderful local place that I’ve now discovered is the first choice for families in the area with children who have special needs.  It also has a very wonderful and truly local mix of cultures, faiths, religions and nationalities.

Both of these factors mean that I’ve been able to watch my son begin to recognise difference and recently, put his own version of labels and explanations on them.  So last year he gave a description as Parsi for his friend, helped by the school’s recognition of all the festivals that occur across faiths throughout the year.  He also began to see his own colour and others around him, helped by the drawing of a self portrait for his peg.  He also mentioned a girl in another class, who I had already clocked as having Down’s Syndrome.  He first described how she had someone to look after her in the playground, then that she wore nappies.  Which made me want to tell him that she also has a genetic disorder, a little like Louis, and that she needed different things to help her be at school just like everyone else.

Now that he’s a year older and still interested, I’ve given him the name for this little girl’s condition to add to his lexicon.  He’s also been talking about two twin boys in the year below that he and his friends chase around the playground daily (don’t worry, I’ve checked, apparently the boys ask them to and nobody tells them off).

He described them as having someone looking after them like the little girl in his year, and when we discussed it, that maybe they also looked a bit like her.  But he also said “I think they’re diabetic mummy”.  I said if he wanted to know more that he should ask their helper, but careful not to have him seem like a nosy or mean kid, I told him to explain that his brother has a genetic disorder too.  He came back without much further information which makes me curious to know why this adult didn’t engage with my curious but clearly sensitive and intelligent boy.  Still, that’s for another post.

The next time I dropped him off in the morning, he pointed out the boys as they were driven in and met by their helpers.  I could see that it was unlikely they had Down’s and for now he’s stopped wanting put them in a box in his head, but he’s drawn to them and waves and shouts their name every morning.

So whether he labels it, knows what it is or even understands it, my big caring boy is drawn to difference, to different kids and has a desire to reach out to them and try to make them smile.  And this makes me know that at least for now, we’re doing something very right indeed.

Musings

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.

Sara Jackson and her Family

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 little 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