I am more than just a smidgen excited to be sitting writing this blog post next to a cardboard box brimming with colourful, shiny, inviting packs of cards. The cards are not part of a game. There's no element of snap, no quiz questions. There is no competition or race against time.
The Fink conversation cards are bright and inviting
The shortlists were announced yesterday* and amid a flurry of excited tweets, I realised that our Down's Syndrome blog was listed in two categories. Well 3 if you count being part of the Special Needs Jungle team as well. (Eeeek!)
March 21st is arguably the busiest time of year for any parent, charity worker, blogger, campaigner or advocate who has, or has any connection with, someone who has Down's syndrome.
Yes, it's World Down Syndrome Day!
#WDSD2014
The date is chosen to represent the 3 copies of chromosome 21 that individuals with the condition have. It's a day of celebration, education, of support and sharing information, as well as fundraising for the charities we hold dear and this year the focus is on HEALTH.
It is 2 years since I nervously sent my first unhoned musings out into the ether via the World Wide Web. Read Blank Blog Blindness here, where I talk about,
"a feeling of wanting to get something much more important, very right from the onset.
Of wanting to create something that will lift spirits, give support, bring people together, raise a smile and encourage. Yet all the while providing practical tips and real solutions for the everyday lives of parents and educators who have a child with Down's Syndrome in their lives."
Motivation
Convinced no-one would read, I nicknamed it 'my little blogette', the sharing of our family life with 2 gorgeous daughters, one with Down's syndrome. My motivation was, and always has been, to buy precious early time for parents following a diagnosis. To show them that this path less travelled is never dull, that their lives will go on pretty much as before, and that with the right support their children will achieve great things. To dissolve and shine light on the kind of fear that consumed me in the early months after Natty's birth. An all-round Down syndrome support blog was my aim.
But what has my blog taught me? What have the unexpected lessons been? How has it changed my family? Where has it taken me, my values and thinking? And what has it achieved for others?
1 Blogging is time consuming
As the photos show, 'blogging' doesn't really describe what has become a full time unpaid job for me now. Speaking, writing, training, learning, meeting, talking. If you're thinking of starting a blog you might want to set strict limits for it from the outset. I probably spend 7 hours a day Mon-Fri on associated work, and I'm late for everything because I'm always trying to squeeze in one last call or email or Tweet.
Why do I do it? Why don't I say no when I'm asked to write an article for nothing that takes a week of my spare time? Why do I do an unplanned radio interview at 10 minutes notice which leaves me shaking with adrenaline all day?
Because when I discovered that people enjoy reading and listening, it made it all worthwhile. When one acquaintance said that before reading Downs Side Up she had felt sorry for our family and now she doesn't, I suddenly knew I was changing the perceptions of the wider public towards not just Down's syndrome but disability in general. When a new Mum wrote to me from her maternity ward bed having discovered us via Google, saying that the blog was the only thing giving her hope for her new baby with Trisomy 21, I knew I couldn't stop writing.
I'm still never prepared for the honest, open and heartfelt emails and comments that come my way, often anonymously:
"Your blog has keep me going the last 3 months,"
"thank you for showing us that there is light at the end of the tunnel",
"I hope I will one day be as positive as you are",
"I keep your newspaper articles in my kitchen drawer to boost me on the bad days",
"My friend had a termination but having read your blog she is going to try again and will not have testing this time."
A Typical Day
Wake up and drag self out of bed after 3 alarm bells
Shout 'shoes' and shovel breakfast in the girls while they create dinosaurs or similar
Do school run
Home and prepare dinner (usually chucking a stew in the slow cooker)
Check and replay to emails
Check and post on all social media sites: Twitter, Pinterest, Facebook, LinkdIn, Tumblr, Google+
Write an article for a magazine or journal
Turn down about 5 emails to do reviews
Pick the odd 1 relevant review
Plan my Special Needs Jungle and Britmums columns plus any guest editing I'm doing
Join in any live Twitter chats
Interview any guest bloggers
Chat to the latest documentary maker or journalist needing advice or a quote
Think about writing a blog post of my own.... time usually short for that.
Run out the door 5 mins late for school grabbing 'lunch' on the way
Do errands, docs appts etc
Homework, precious time with the girls, bed time and stories
Tidy up and the finish off the things that got started during the day (if I don't fall asleep before).
* I never let blogging encroach on family time, so after school and weekends are off limits.*
2 It's an emotional journey
I never for one minute expected blogging to be so all-consumingly emotional when I started. There are days where it gets too much and I have to step back, days of grief where a family I've got to know online have lost a baby, or of fear when I have had to go to the Police about a particularly nasty troll and the bigots voices surround us. A couple of days off usually brings the strength to continue shining a light into dark corners.
Then there are the times when I have been more nervous than I knew possible, frozen with fear over a live Skype BBC TV interview on a tricky subject or speaking to a room of MPs, adrenaline sending me to the smallest room in the house over and over. Then the moments of pride, reduced to tears because Natty has another modelling job or someone has noticed the reason for the long hours and nominated DSU for an award: Outstanding Contribution, Inspire, Woman of the year, Local Hero. And then the invite to Number 10.
None of it seems deserved and I am left humbled. And often crying but more determined than ever.
Yet, dear blog, I have grown a thicker skin, become wiser in so many ways.
3 Blogs have a life of their own
The work surrounding the blog has been organic. There is never a plan in mind, I just follow it's lead. Sometimes Natty's modelling or an award leads to a lot of media work. Likewise if something happens that demands attention I will write for change, e.g. getting a bigot removed from office for example, campaigning for a law change or calling for justice for someone wronged. Then I will be invited to do various events, such as speaking at conferences or Parliament. For this I research the subject matter in depth, such as the facts surrounding disability abortion law, sometimes there are facts I wish I hadn't read.
Other than that I watch my family and listen to my heart and thoughts in the quietest of moments and write about them.
Just as the direction a blog takes can change unexpectedly, the posts which are read the most is often surprising. It's never the posts that you favour as a writer, never the ones which are the most well-wrtten, but often the most controversial. I am however happy to say that my all time most popular post is the most useful. It's the one that I read at Britmums last year and made you all cry. What to Say When a Baby is Born with Down's syndrome.
4 Writing is unexpectedly cathartic, healing and educational
Writing and speaking about the complicated emotions that come with an unexpected diagnosis for our baby was intended to help other parents, to let them know that everyone adjusts in their own time and way and that a full range of feelings is entirely typical. What I didn't realise was that through that writing, you organise those jumbled thoughts until you reach a point where they all make sense even to yourself, but you will bring them to the fore again. I have spent many evenings crying over the pc, pouring my heart into a post. It's a hugely cathartic and healing process, like free therapy I suppose! And by blogging those thoughts you enable friends and family to read them in privacy and at a time that suits them as well. You are able to explain in a way that you would never be able to face to face, and that helps them understand. Alongside that, blogging is a learning curve. How do write this and pin that and post the other. And the research involved is like doing a degree!
5 There is so much online support
Above all of this I am thankful for the internet enabling the words of bloggers and charities and support groups and writers and forums and professionals and other parents to help others, but also to bring the support I need in to me at a moment's notice. I am grateful to be part of such a supportive online family, working together to change the world one attitude, one law, one person at a time. Thank you all. If you are reading this, it's you too.
I am eternally thankful for the friends I have made along the way be they parents of other children with Down's syndrome, wise parents of adults, professionals with Down's syndrome or bloggers who make me giggle when I need a change or give me technical advice when I am stumped. Online friends who lift me when I'm tired, authors and artists and playwrites and actors, even some lovely media folk who have remained constant advisors and friends (in between those who would sell their granny for a story). I always said Natty was a great ice-breaker, but our family has met so many wonderful others whose paths would never have crossed otherwise.
6 Not everyone will understand
I can think of one or two, no more fortunately, people in our local community who have barely spoken to me since the media coverage of Downs Side Up began. I wondered at first if they misunderstood my motives, thinking I was trying to be like Jordan and revel in the public eye. Then I wondered if jealousy was playing a part, but finally someone pointed out that blogs like mine hold up a mirror for others to see their own reflection in. And as we are bringing about a subtle change, they see this is a criticism of the way they were doing things before...
7 Blogging can be costly
Paid for every click you say? Ha! Is that one of those urban myths!?
I do get a lot of requests to write reviews, usually in exchange for a cheap plastic toy.
I say no of course.
Other writers ask if they can put a post about insurance on my blog.
I say no again.
I took adverts off the blog after a few weeks because it was distracting.
Now there is nothing wrong with blogging for payment, I just choose not to do it because I don't have time and I want the message of Downs Side Up to be clear. So yes, it costs me more than I earn. Software, domain name fees, hosting fees, train fares, blogging event tickets, accommodation, even postage.
Worth every penny though.
8 You have to do it naked
Not strictly true of course, but, spurred on by Kate on Thin Ice, getting naked to bring awareness of miscarriage, to encourage mums to celebrate their post-birth bodies and to forgive them for the losses while raising money for Down Syndrome Awareness Day was just one of the more curiously unexpected events of the year. Read Downs Side Up Uncovered here to find out more.
I wonder what the next year will bring?
I hope you'll pour balm on more hearts dear blog, open more eyes, make some real change, get our collective voices heard. I know you'll bring new friends, new inspiring plays or films or dance or books to watch and review. I will meet more adults with learning disabilities who will lead the way. We'll learn more tips and tricks to make life easier, often from medical or teaching professionals and we'll share them in the melting pot. Blog, you are now a hub, drawing inspiration to you like a powerful magnet. Thank you.
I could write for hours about what happened when the two divas met for the second time... but I'll let the pictures speak the words. I bring you Natty and Rosie:
Photographer Simon Burt put together a striking series of portraits of children and young people with Down's Syndrome last year. It has been hung at the Eden Project and touring ever since and has now just taken pride of place in the main link corridor in the Royal Cornwall Hospital.
Natty had an appointment there last week and I took her to see the images afterwards. She immediately spotted herself way up high, and screamed,
'It's meeee!'
Well, that certainly got the attention of many a passerby, who shared her unstoppable smile.
The exhibition looks fabulous, do have a peek if you are passing.
There were MAD bloggers galore new faces and some seen before. it was a chance to meet before the big night and thank our families for their support.
Hayley, Natty and Mia from Downs Side Up
That surreal gulf between knowing an avatar
and spotting someone in reality.
I missed many, for which I kick myself.
I promise to learn names, blogs and Twitter handles.
I will!
New friendships were forged. puppy love blossomed. children were nervously chased
as conversations remained half finished.
Natty's day out; eating doughnuts
Too much sugar was consumed adrenaline made us squeal. boundaries were pushed new experiences devoured.
We jumped queues with our gold status
collected badges along the way
our lanyards the souvenir
of a fabulous day..
Reluctance to end each ride drops of rain, plastic ponchos tears at the 4D film we negotiated our lows
Allowing safe risk, letting go takes practice for me. feelin sick with each twist and turn we watched Natty and sis devour the day with gusto.
Up, up and away
"By myself!"
Soon climbing wasn't enough
Natty wanted the exciting stuff!
My phobia of rollerscoasters
had to be concealed.
(As you can see I hid it perfectly!)
Fun at Legoland
So we ended on a high!
The kids got me on a roller coaster
all the while protesting that I have been pushed screaming bravely jumped out of an aeroplane for charity once and that I have nothing to prove!
Home we came,
Natty snored all the way
and woke this morning chattering
"Mummy scream, Mia scream, Natty scream, Daddy scream."
Last Friday saw Natty's first ever Sports Day! Woohoo!
Egg and Sppon gentleness
Last year we had planned and practiced, mainly what was expected of her, what each activity entailed and how to wait her turn, cheer on her friends and so on.
Well, if you can cast your mind back to last summer, it rained. It rained a lot. It washed out 3 scheduled Sports Days and then we ran out of term time. The weather matched my mood, I was so very very disappointed that Natty and her classmates didn't get their first experience of this tradition.
Pippin is smuggled in
However, straight after half term (nice and early in case the weather decided to change its mind) we received a slip giving us the date of this year's event. Straight in with no time to plan or dilly dally.
Sun cream and hats were the order of the day and we turned up proud and excited to watch Mia and Natty enjoy the fun together. They had been put in the same team which pleased them both greatly. In fact it was the first time Mia hasn't complained about not looking forward to Sports Day in her 5 year long school career.
We even brought Pippin with us (Dogs, we later discovered, weren't allowed, so I hid him under my arm and pretended he was a fluffy handbag with legs.)
Now for those who think Sports Day is about being competitive and sporty and excelling and winning, well there is that element, it is brought out in some more than in others. But there is so very much more to it. This Sports Day was very inclusive; every child competed in every event, including the ice lolly pit stop. Older children worked with younger children to encourage and support them. There were future athletes, children who shun excercise and wouldn't put team sports at the top of their list and children with LDs and physical disabilities.
The sense of achievement for all involved was all too plain to see. Look at Natty's face when she threw her last and 5th hoola hoop and it when over the pole. Priceless. A boost to any child's confidence.
Hoola hoop over pole result!
I was nervous about the 100m race. What would she think as her long-legged friends tore down the straight ahead of her? Would others look on and feel sorry for her 'bless her'.
Not a bit of it. As Natty tore down the straight as fast as she could, watching her friends disappear over the finish line ahead of her, she looked from side to side at the crowd, with a grin as wide as the Cheshire Cat, and she waved. The crowd roared with cheers as she finished and many other Mums had tears, making my wracking sobs slightly less conspicuous. Pride doesn't come close to describing what we felt. Sports Day being one of the events we wondered if we would ever watch when Natty was born.
Hurtling down the track, waving to her public, after all her friends had crossed the line
Another little girl's wheelchair had to pull over for a pitstop as it was experiencing 'technical problems' because her TA was pushing it so enthusiastically down the straight, so high was the feeling that afternoon. I'm not sure it was made for such speeds ;)
Javelin Thrower par excellence
The egg and spoon race was a similar story. Natty carefully and gently tiptoed down the track, only dropping her egg once. Slowly but surely went that tortoise.
So, new skills were learned, confidences were boosted and our little community was again brought together, brought closer by the variety of children we have in our midst sharing a common goal that afternoon. For, as Mia says, 'Everyone is different'.
I reflected on our Sports Days, when I was always the last to be picked, made to feel chubby and useless, with sadness. Thank goodness those days have gone for our girls, although some schools have yet to fully embrace a properly inclusive Sports Day so I understand.
It's amazing how events like this rake up the past isn't it.
Tricky bean bag event
We returned home happy and with sunshine in our hearts, a few millimetres taller, our chests puffed out far. Mia was beaming. Natty was unusually quiet. When we looked around she had fallen asleep in the car...
Thank you thank you thank you for all who voted for Downs Side Up in the Britmums Brilliance in Blogging Awards. It has been announced as a finalist in the Inspire Category, one of 6 to make it through.
What a huge honour indeed, and every one in that category is a winner to me, all powerful, selfless writers whose motivation is to help others.
Although I don't consider myself to be up for the award, instead it is for my blog, which truly has taken on a life of its own. I simply follow its lead and go where the readers and Natty take me...
Next weekend we all head to London for the Britmums Live event, a kind of Mecca for Bloggers, but with Prosecco!
It's a chance to mingle, meet online friends again and learn how to make your blog a better and more beautiful haven and it is here they will announce the finalists.
It's all wonderfully exciting, and right now, between fighting Councillors who say children with disabilities should be 'put down' and trying to get the moral issues of the newDS screening test raised and the family's views heard, it will be a welcome oasis of positivity for me.
Our house was filled with excited women and one token man, all preening and beautifying each other.
We don't get out of our jeans and wellies nearly often enough, obviously!
Natty and Mia beamed from ear to ear as we washed and straightened hair, painted nails, including a layer of glitter, and gathered dresses, tights, new patent shoes and hair bows together. Their babysitter is a hairdresser and she came in to help and Natty sat stock still while she wielded the scary looking straightening irons through her fine hair. She wanted a touch of lip gloss and a wave of mascara to be like Mummy and Mia too.
We even pinned Daddy Downs Side Up down and plucked his eyebrowns and buffed his nails, and shaved his head. (You all do that to your menfolk before a big night out, right?)
Handbags were found and laid out ready...
Ready for the biggest family night of our lives! For we had all been invited to the Pirate FM Local Heroes Award Ceremony, a glitzy black tie affair, taking place against the beautiful backdrop of the Eden Project. Little Natty had been awarded the Child of Courage or Achievement Award for her modelling, opening of doors for children with disabilities everywhere and gently changing perceptions as she melts hearts wherever she goes.
And yes, there was to be a disco. "With actual DJs who actually work on Pirate FM playing the music we listen to on the radio". (Mia G, 9)
And yes, there was to be "staying up late". (Natty, 6)
And yes, the girls were "coming too". (Natty 6)
...And yes, there "was going to be champagne". (Mummy, 43).
We were dressed and ready to leave in plenty of time. The girls were a cloud of pink and yellow chiffon in the back of the car. As they sat poker still, I joked to Bob that my only stress was keeping them clean until the point that the awards were given out. My biggest nightmare would be a dinner swimming in gravy and a pudding floating in chocolate sauce. I believe pale chiffon is the biggest magnet for dark brown liquid foodstuffs.
"I'm sure they won't serve that..." (Daddy)
Mia and Natty all set to party
On arrival there was a red carpet to float along while photographers took shots from every angle. I bristled with pride as Natty and Mia confidently strode into the room filled with smartly dressed adults, with not another child in sight, apart from the wonderful young woman Megan Rumsey who had won Young Person of the Year for being an incredible sister and voice for those with disabilities.
Mia marvelled at the beautiful gowns, Natty asked everyone "What's your name?"
We sat at the beautifully decorated table, complete with gold bows on the back of the chairs and gold star-shapped ballons, "Just like my shoes!" exclaimed Natty.
Of course, just for you inspirational girl.
We chatted to our category sponsors, the truly lovely people from Kidzworld who helped set up the event, and began eating. A simple Caprese salad to begin, followed by roast beef and... A SEA OF GRAVY!
I panicked (thinking of possible big brown stain right down the front of that yellow chiffon) and the lovely waitress brought Natty a dry dinner without the sauce poor mite. Both girls had to be pursuaded by everyone at the table to wear their napkins, so we all ended up doing it to set an example.
Napkin fun
Help, my mother is embarrassing me
Oh and yes, there was chocolate sauce with the brownie for desert!
After dinner the the award ceremony opened with former X Factor star Amelia Lily singing a beautiful trio of songs, the last of which had the most beautiful lyrics that seemed so fitting for Natty. 'You Bring Joy, You Bring Pain'. My facade cracked and I began to cry. Natty took to the stage to meet Amelia and was presented with a signed photo of the singer.
There was some dancing and quite a bit of showing off and bottom wiggling.
That's Natty not Amelia you understand!
We were all emotional before we had even begun.
The awards began and we were all treat to an amazing array of stories that affirmed our belief in community and the human spirit.
An elderly neighbour who collects prescriptions for those who can't get out. A young woman driven to raise money for eye charities following an eye problem of her own.
A chef who happens to be a supportive and thoughtful boss as well as a culinary genius.
Parent of the Year, who is a positive force for her children, one of whom has Autism, despite being a single Mum and having her own health issues.
An amazingly brave Emergency service worker, a coastal rescuer, an environmental guardian angel, an encouraging teacher and great paralympic sportswoman and a lady with healing hands.
Natty's award was called. She and Mia took to the stage with neither parent to help them. I wanted both girls to feel an equal part of the celebrations, for Natty is only Natty because her big sister is such an incredible influence on her.
A video clip was played, showing an interview with Natty and I. I don't mind admitting I sobbed like a baby, taking handfuls of the tissues thoughtfully provided on each table.
The clip was funny as well as heartwarming, featuring raspberries, funny faces, more bottom wiggling and a few "You are joking!'s". You can watch it here.
The audience laughed with Natty and she and Mia took the applause well, beaming even wider from ear to ear.
They were presented with a selection of toys from World's Apart (who Natty has modelled for ) and a family pass to Kidzworld. Natty couldn't have been happier as she stood and posed for the journalists centre stage.
We had just enough time to meet a couple of the Heroes before some had to leave.
2 people really stood out for me, Matt Vernon who tried desperately to save the woman whose car slipped off the King Harry Ferry slipway last month. An unassuming man who embodies all that society should be, and Shane Edwards who offers oncology massage and has worked her calming and relaxing magic on over 1000 cancer sufferers many of them terminally ill. A woman who simply radiates love and care.
We were just throwing some shapes on the dancefloor when we realised we were in danger of turning into pumpkins. Natty was flagging and finding the music a little loud, so Mia had to cut her wild routine to Guns and Roses short. It was half past midnight!
Thank you, thank you, thank you to all the sponsors and Pirate FM and the judges and nominators and fellow heroes and all those who made Friday night possible.
I know 2 little ladies who had, quite simple, the night of their lives.
I leave you with a quote from Natty this weekend:
"I want party again. I want gold shoes and present for me and surprise for me and music and dance, waggy bottom." And that sums it up in a nutshell.
The baby phase is long gone. Now I've had to accept that the cuddly toddler and beyond phase is to be packed up and put away too.
For Natty, who grows and develops at her own gentle pace, this has extended to 6 years, but I finally had to face the fact that she had grown out of many of her firm favourites. The clothes that had been worn while so many memories were made. We affectionately call them her 'trusty steads'.
Last week I read a touching post by Ross Mountney: Parenting - What Really Matters. about appreciating and enjoying our children while they are young, even if those phases are the toughest, for it simply does pass too quickly.
So please join me for my first ever vlog, about packing away that phase and looking ahead to pastures new. I'm rather nervous about it and would love any feedback you have.
I may have forgotten to mention, well it's been a bit of a week, that I have had an invite to No.10 Downing Street.
There wasn't much time to get hair fixed or a new outfit. The nails will have to do and I've only just found time to Google the folk I will be meeting. Mencap have invited a few of us, those who work in the Learning Disability field, to meet Samantha Cameron. Yep, the PM's wife. I will try to tell her of our fears in a polite way, if I get a chance. I might even mention the thorn in Cornwall's side, he of the unmentionable name. For now... the bag is packed. Passport. Check. Invite. Check. Heels. Check. Reading matter. Check. Smartest frock and jacket I own. Check.
Thank you all for your support and well wishes. H x
This month, a number of quite fabulous and very powerful posts featured in the Britmums SEN round-up. The topic was siblings. I've received several heartfelt comments about that round-up including this one, from Charly a woman who has grown up with a brother who has a disability. Charly's account is wonderful in its honesty. It exudes love, but she also isn't afraid to outline her frustrations too.
Charly doesn't have a blog of her own, so I am featuring her words here on Downs Side Up.
David and Charly take a ride in an American cop car for his birthday
I read Hayley Goleniowska’s Special Needs round-up, “what about the siblings?” with interest. As a sister to a younger disabled brother, I have spent the last 22 years thinking, what about me?
Hayley’s post grabbed my attention for two reasons. Firstly, to hear of a parent’s perspective on how they think their disabled child’s siblings are affected by the situation and secondly, to read other siblings’ perspectives and find that they mostly align with my own. Reading Hayley’s and others posts started me thinking about the journey I have taken as David’s sister, the emotions, the experiences and how it has shaped me as a person and I decided to put pen to paper.
I’m going to start with my current position. David is 22 and in residential care at a college in Exeter, and my parents live in Solihull. I live in Nottingham with my husband. We are currently in the process of finding a residential care package for David near Solihull, as his college placement finishes in July 2013 and we can no longer support his needs at home.
What I found hardest as a sibling was finding that nobody else understood my position. My parents were exactly that, parents to a disabled child, which is a very different relationship to that of a sibling, regardless of any disability. Although my parents were constantly supportive, loving and devoted to both David and I, they couldn’t understand how it affected me, nor I them. Being a sibling is a unique position – you grow up with the realisation that your disabled sibling needs more care than most, and ultimately, you will be in a position of being their guardian, once your parents have passed on. Your childhood and your adulthood is affected from day 1 of their birth, and in my case, I would say for the better. Your parents’ life is affected from day 1 of their birth, but they have had their childhood.
There was no sign that David was disabled when he was born, it was only after 6 months that his development was noticeably slower and investigations were made. The day my parents found out, I was sat in the back of the car with David and (so I’m told) suggested that they sang “If you’re happy and you know it” with me. Perhaps I sensed that they were upset! David has never received a true diagnosis, and instead has an amalgamation of problems, including characteristics of cerebral palsy, epilepsy, severe learning difficulties, partially sighted and unable to walk. Despite this, he has the biggest personality of anyone I know and always makes those with him smile. From then on, David and I have maintained a bond that is probably closer than if he hadn’t been disabled. I have waited at the front door for the paramedics to arrive whilst my parents sat with him through his convulsions. I have waited for the outcome of each hospital appointment to see what new diagnosis he has been given, what treatment they will try. I have read his school reports, watched him in his school plays, dressed up with him for World Book Day (Where’s Wally was one of my favourites!) and tried to make his physiotherapy fun.
Although David doesn’t have a cognitive understanding equivalent to his age, his empathy has always been far beyond his years. If I’m upset, he’s upset. If I’m quiet during a phone call, he asks “what’s wrong, sister?” If I’m excited, he’s bouncing out of his wheelchair with happiness. It’s for this reason that I would do anything for David. Despite all his difficulties, and the affect it has had on my life, and our family, he is so loving. We often say that he is completely unaware of the stresses and struggles of life but that is a blessed relief, because when we are tired of the stresses and the worries, we can enter his world for 5 minutes to forget.
Having said all this, it’s not always a rosy picture of perfection – far from it! There have been times where I have wanted to (and have done) stamp my feet, scream and feel so angry that “it’s just not fair”. Why should I not be able to go on a “normal holiday?” Why does David always have to be the centre of attention? Why do I get stared at when I’m in a public place with him? Why can’t he feed himself? Why does he not understand what’s appropriate behaviour and what’s not? Most of all, my main feeling was not of jealousy or anger, but of upset and worry for my parents who are working so hard to look after him.
Other times, I have felt tied to David. I chose a university that was only an hour’s drive from home, so that I could be with them as soon as possible in an emergency. My future career choices, where I choose to live and establish my family are all, to some degree, decided by where David is living. My parents have always encouraged me to live my own life, and I have done, but my perspective is that I’d rather be involved at all times, to a lesser or greater extent, than to leave him entirely in their care and then uproot my life and my husband and children’s lives in 10 years, or whenever my parents can no longer take care of him.
Ultimately, being a sibling to a disabled brother does change your life, and the worse thing you can do is to try and pretend otherwise. Allow this opportunity to shape your life, and you. Don’t fight it. Enjoy the journey and know that these experiences have opened your eyes to a world you may never have known otherwise.
We sat at the beautifully decorated table, complete with gold bows on the back of the chairs and gold star-shapped ballons, "Just like my shoes!" exclaimed Natty. 
