It's a Blogger's Life: Pause for Thought

Sarah Pylas who wrote Grenglish

A Blogger's Legacy

This week saw the passing of a supremely talented writer and much-adored and respected member of the blog community, Sarah Pylas. She was one of The Originals, a well-established influencer when I started out over a decade ago. 

Sarah's blog was called Grenglish, a beautifully honest account of life married to a Greek man, her husband Pan. Sarah's devotion to Pan and their son Zachy radiated from her work. I urge you to go and have a little read in her honour. 

Sarah joked that behind every Greek man there was a woman rolling her eyes... but the love between them was tangible. Sarah died surrounded by friends and family and was brave and hilarious to the end, Pan told her online family.

And that is what the blog world is, a family. And what an amazing legacy Sarah has left behind, not just the way she touched her fellow writers who she supported and showcased selflessly, but a warm and honest piece of work, a deep insight into her mind. Sarah left us young, but boy, did she packed a lot of life into her years! 

Sarah and others from the blog world at MADs Blog Awards

My Blog Journey

I paused for thought to reminisce about my own blog Downs Side Up, the way it started, how it evolved and the way blogging as an industry and form of writing has changed over the years and what a close-knit online community we are. We really are the privileged few and Sarah played a large part of that.

I recently had the pleasure of talking alongside Steph Curtis of Steph's Two Girls on this subject at BlogOn. The sacrifices had our families made, what had our words achieved and the friendships and lessons had we gained along the way? Because over a decade ago we were writing into unchartered territory. No-one had put their family stories out into the public sphere in quite such a way before and we inevitably made mistakes as we found our way, from oversharing to dealing with trolls.

Downs Side Up and Stephs Two Girls
discuss blogging tips at BlogOn

Blog/Family Life Balance

For me, the original motivation for my blog was to buy other new parents precious time bonding with their baby, by dispelling the myths and fear that surrounded the diagnosis of Down's syndrome for me when Natty was born. I wrote what I had needed to read in those early days, but soon found the unexpected benefit that the process of blogging was cathartic and allowed me to access support as well. 

My blog was organic, there was no plan, it just evolved and I wrote in a homely way about what was topical or going on in our lives at that time. But it did take over. It did eat into family time on occasion, despite always trying to strike a balance between creating change and 'putting ourselves out there.' 

And now, post-divorce, I am reworking my blog in order to monetise it without losing its message or my integrity, as that is the perfect work from-home-solution in a post-pandemic world. So now, more than ever as a single Mum, I need to ring fence my time with my girls, and organise my ways of working like never before. 

 

#AD This is where employee Apps such as Blink, as used by the NHS, can help streamline your workload, aid communication between colleagues and store vital resources all in one easy-to-access platform. 

The Highlights

So, the heady days of parent blogging may be over, where our self-hosted websites were newsworthy and our words won awards. We've all moved on and our words are being crafted elsewhere. Our cute toddlers are now teens who don't want to be photographed posing with gifted products or have their private lives discussed with the world. And that's as it should be. My blog is a more generic place now, filled with facts and resources rather than family anecdotes.

Blogs today may well be slick and professional, but it is important to look back on what we have achieved with our homespun websites. Here are just a few of the things Downs Side Up has enabled me to do alongside my fellow parent bloggers:

Model Natty meets Lorraine

• Encouraging advertisers to use a diverse range of models.
• Giving our opinions in the mainstream media.
• Campaigning for a more inclusive society, for equitable healthcare and education.
• Advising publishers on how they represent disability.
• Publishing books and resources.
• Giving TedX talks.
• Having tea with the Queen.
• Being awarded British Citizen Youth Awards for work towards a more inclusive society.
• Raising huge amounts of money for charity.
• Supporting other parents in the same boat and changing the narrative around disability.
• Advising at parliamentary level. 
• Delivering training to medics and teachers.
• Writing for magazines, newspapers and other online platforms.

Oh, the places your blog will go!

Quality over Quantity

I know our friend Sarah always got this blog/life balance right, dipping occasionally into her blog more as a way of chatting authentically with others and having a break from her offline job than anything else, but always writing words of great wisdom when she did. 

And I thank her for being in our lives and always being so supportive of others' work. She truly was one of the few who helped give so many of us a leg up. Thank you Sarah. 

5 Reasons to Blog About Special Needs (and 5 Pitfalls)

All those time-hopping notifications on social media reliably inform me that my blog Downs Side Up is 5 years old. 

That just can't be right.

Can it?

*Cues fanfares and balloons and copious amounts of cake and makes a note to slow down sometime soon.*

Blogaversary

So why are there so many special needs blogs these days, and what are the advantages and pitfalls of starting one? 

For 5 years I have been jotting my private musings into my computer and my words have flown around the world, creating tiny changes here and there. Little ripples of hope I like to think. Only this week I received a message from a woman who's just borrowed a year old copy of Good Housekeeping from her Cape Town library and found our 'inspiring' (her words) story inside. 

This concept never ceases to amaze and humble me.

SEN blogs in the media

Covergirl

This Christmas, a sparkly article in Womans Weekly was published, featuring Natty on the front cover and a two-page spread inside. Blogging is evolving, it's becoming more and more mainstream and merging with the media.

Evolving Blogs

Over the years I've written about the people we've met and the places we've been through Downs Side Up and looking back I feel the need to pinch myself at times. There've been celebs-a-plenty, more magazine articles than I can remember, commissions to write chapters and articles, collect awards, interviews, tea with the Queen, fancy dress with the Lord Mayor of London, a slot in a documentary, lots of modelling and a sea-change towards inclusive advertising. 

But this is not why we do it. It is the thousands of parents and bloggers and medical professionals that we have hooked up with along the way that really count. The rest is just icing on the cake. 

'Why are there so many special needs blogs these days?'

I recently attended Mumsnet #Blogfest16 to host a Special Needs Blogging round table, and one of the first questions I was posed by the organisers was why we thought there were so many special needs blogs, enough to warrant their own round table and even their own award ceremony (The BAPS - Bloody Awesome Parents - are to celebrate these writers in May '17):

Mumsnet Blogfest16 Special Needs round table

When I started Downs Side Up five years ago, it was one of the first Down's syndrome blogs in the world. It filled a void I guess. And 5 years ago when I first attended a blogging conference I pretty much knew all the other SEN bloggers who attended. There was Steph Curtis - Stephs Two Girls and Tania Tirraoro - Special Needs Jungle and Steph Nimmo - Was This in the Plan??? and Renata Blower - Just Bring the Chocolate, each writing in their own niches. 

Today, there is a blog on every condition and disability to suit everyone. Each with a personality as varied as its author's voice and each with its own unique readership. There are family forums and patient groups hosted by every charity and many companies too, lending support to all who are looking for it. This can only be a good thing, our writing has formed a kind of safety net.

But why are there so very many of us writing about this particular topic? We* set about finding out why, in a safe and supportive space. 

5 Reasons to Blog about Special Needs

It's true that bloggers write incredibly powerfully about special needs and mental health, often drawing on personal experiences in a way that mainstream media struggle to do. They are completely motivated by a desire to create change for their families and others, in a way that paid writing cannot match.

• It's cathartic - the most common reason to start a blog is to be able to express yourself. As one writer put it, blogging is a cheap form of therapy or counselling for many. So often we find ourselves writing into the evening, tears plopping onto our keyboards, and working through the trickier emotions we so often face and somehow we 'blog through it', as if seeing the words on the page unscrambles what is in our heads and hearts.

• Sharing information - Some parents share resources and tips on their blogs, others use the online space as a kind of diary to provide a running commentary with friends and family when their child is ill. This reduces the need to keep repeating themselves and the blog acts as a kind of one stop shop of information. It can also be a way of explaining difficult situations to loved ones when a face to face conversation might be impossible.

• Support and community - When I began my blog I thought I would be supporting new families with a baby with Down's syndrome. What I very quickly realised was that my blog would act as a portal into a whole online community who would help me through the toughest of days, the worrying moments and whose families would lead the way for us through example. Blogging brings us access to a fantastic network of support and friendship and often supplies the answers we seek that we can access in small chunks whenever we are ready. It reinforces that we are not alone.

• Campaign work - Often the blogging community join forces to create lasting change. Our voices are stronger and louder together, and we can see them put to good use working on projects such as calling for more accessible toilets, supermarket trolleys with support for disabled children or adapted clothing and larger nappies to be more readily available. These, along with campaigns to educate the public and medical professionals about various conditions are having a real impact on the way families like ours experience life.

• Fundraising - Another way in which SEND bloggers often join forces and work together for good is fundraising for their charities, as well as raising the profile of the work they do. With social media and hashtags often going viral on awareness days, it can be a straightforward way to collect vital funds. 

5 Things to Watch Out for When Blogging

Blogging is not always plain sailing, in fact far from it. I have experienced many times where I have thought about giving up, where it has taken an unexpected turn I didn't like. Here are the pitfalls that you may encounter along the way. 

• Comparison with others - It's easy to end up either comparing your writing, your lifestyle, yourself or your child's condition to others. You, your family and your blog are unique, so accept and celebrate that. 

• Pity and/or inspiration porn - This can be a very fine line to tread for many and you have to weigh up being honest and truthful with creating a welcoming space on your blog for others to visit. I think it's important that readers don't feel sorry for my child, or think her inspirational for doing ordinary everyday things, that would be when it all becomes patronising. I would also stop short of using her voice as my own, putting words into her mouth. 

• Privacy vs advocacy - There is increasing criticism of parents writing blogs about their children with disabilities without their informed consent. Our blogs, after all, will be a digital tattoo for the rest of their lives and this is worth bearing in mind. My blog has certainly changed as the children have got older but it has always been a place to showcase the voice of those with Down's syndrome too. I think having a child with a learning disability means that we often become their advocates and without our blogs they would still be hidden and forgotten. That said I am cautious about what I share and many bloggers chose to keep their writing anonymous. 

• Trolling - The internet, social media seem to encourage a kind of sport where it is acceptable to write horrendous things to vulnerable people that you would never say to them in real life. Like most bloggers we've had our fair share of trolls, some which needed police attention, and also criticism from within our community. This can sting and it's taken me years to grow a thick enough skin to let it wash over me. 

• Losing your way - Comparison to others, following the latest meme, competing for votes for awards, over-monetising your blog and filling it with reviews or simply accepting to help every single charity that ask you to get on board with a campaign, can all contribute to writers losing sight of why they started blogging in the first place. As you should always pause before hitting publish, always pause before you write. Your blog is your own space and it can quickly become hijacked. Sometimes a blog break helps bring back the focus and reminds you of the original motivations and why your readers started following you in the first place. It helps you find peace with your blog. 

So while I can no longer keep up with the volume of SEND blogs, the dinosaur that I am, it is really heartening and important to know that they are there, and that they are making a difference. 

So, keep writing, blog for yourself, your families, your sanity and make your voices heard. 


* List of Mumsnet Blogfest16 round table attendees:
@tygerbearandme
@ggblog44
@cecillaw
@hlmeadows
@happylittlehugh
@orangethisway
@gingerbreadsun1
@asalexgrowsup
@downssideup

Downs Side Up had been nominated for a 

UK Blog Award for Healthcare. 

Please vote for us here: 

Why I'm Going to Britmums Live

This will be my fourth Britmums Live, the largest blogging event in my calendar. It's a combination of workshops, awards and speeches, a chance to meet brands if you wish, to learn to chat, to indulge in a sneaky Prosecco or two.  I always come home with a new spin on blogging, I learn tips and tricks, and most importantly it is a chance to mix, network and make true friendships with like-minded writers.

Hayley from Downs Side Up at BritmumsLive 2012

Each year is different, I think because we progress along our blogging journey and we therefore go with different expectations and ideas, confidences and questions. In the beginning I had no idea where my blog was going. I wrote voraciously and, if the truth be known, it was a very cathartic, healing experience for me. I cried many tears into my keyboard as I wrote late into the night. 

#TeamT21 Linky

It's Friday folks!

Time to dust off an old blog post you'd like to reach a few more readers, or show us a new shining nugget of your writing. 

8 Things my Blog has Taught Me over 2 Years

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.

Oh, and who knows, maybe I'll find a sponsor!

You might like to read our most popular post 

What to Say When a Baby is Born with Down's Syndrome here.

The Power of the Humble Blogette: an example

I never knew when I started poring my simple musings into my Mac that it would mean strangers coming up and shaking my hand. Well that's exactly what happened this weekend.

We had popped into town for summer sandals. 
This is a tricky job at the best of times. 

The combination of Saturday bustle, busy pavements, a child who hates being measured but loves to show off and leap around the shoe shop shouting 'chase me', a daughter with very distinct fashion sense hellbent on black patent rather than strappy summer footwear, the constant wrangles over walking properly, holding hands to cross roads, the mantras we repeat to encourage road safety, the swinging her along between us to cover the few hundred yards back to the car when she has given up walking, my refusal to use a buggy if its only for my convenience, little shops that don't stock the size you need, lack of choice under one roof, 2 children to find shoes for in one trip....

Anyway, it was definitely a 2 man job and it took all our patience and might, some jelly sweets and the promise of a playing of Mary Poppins to deal with it with a jolly smile on our faces.

With 2 pairs of identical sandals purchased from shops at opposite ends of town in the bag, it was time for sustenance. 

We stopped and flopped in a hearty healthfood cafe and ordered jacket spuds and tea to boost our spirits. The girls asked if they could sit alone. What a super idea we thought. They could feel independent and grown up sitting at a table right next to us.

As it happened the plan worked beautifully. They played with a few toys provided. Natty sat still, didn't get down from the table once and ate her simple lunch which Mia had cut up for her and they chatted together easily without interruptions from the parents. They felt very proud of themselves.

I noticed people looking. Perhaps they thought we were bad parents for banishing our children like this? Not wanting to sit together.


But no.

As we got up to leave a lady and her mother came over. They just had to tell us what beautifully behaved children we had and how touched they were by their closeness, how amazed they were by Mia's gentle helping way with her younger sister. They left by saying we must be very good parents.

Wow, what a compliment!


Then, as we paid and donned our coats, the shoe shopping stress a distant uncomfortable memory, the chef of the establishment came out from the kitchen with his wife. This was a couple of a certain age, who clearly work all the hours they can to run a successful eatery. I didn't have them down as blog readers.

The man leant forward and shook our hands. "I follow you on Twitter" he said. "What you do is amazing. I can tell it takes a lot of time." "What you do for others as a family is brilliant."

And there you have it. You never know who is reading your words and the effect it is having on them when you blog your heart out. Did this couple have any connection to Down's Syndrome? They didn't mention it if they did. And that has always been my aim. To gently change perceptions of the condition from within hearts, without people even realising that I am doing it. Not preaching to the converted, but drawing in those who are not.


If you enjoyed this post you might like to read Downs Side Up: A Gentle Mummy Activist

Looking Back, Looking Forward

You know how it is...you have a whirr of would-be blogs in your head all the time, fighting and jostling for space in your consciousness, you wait until one jumps out and demands to be written.

Bossom buddies x

Well, I've had a few of those such posts pop up in recent weeks, but, if you're a parent you will have noticed that it is the school summer holidays at the moment. Other business takes priority, like being a Mum, entertainer, guide, crafter, artist, gardener, domestic goddess, educator, swim instructor, nurse, speech therapist, physio and mediator.
I thus apologise for the lack of meaty blogging content of late, but I don't regret it... :)

Now with less than 2 weeks of precious summer break left, I'm going to sit right down and throw some thoughts onto this blog. Right here, right now.

The school year ended in mid July, and this gave me cause to reflect proudly on the achievements and hurdles that my girls had overcome. Natty, a confident little poppet with Down's Syndrome, entered mainstream school for the first time, making lots of new friends, holding her head high in the reading and numeracy stakes,  out of nappies, joining in with school lunches, PE, wake-up shake-up and (despite Mummy's neurotic fears) never once trying to escape.

Mia soared this year, happy, healthy and eager, confident on school camp, chosen for Olympic and musical events. After a worrying year last year, when the stresses of living in a temporary accommodation while we did building work on our home took its toll on her physically and emotionally.

As the term ended Her Melness Speaks got me thinking about summer holidays as markers of time with her wonderful blog post Remember?. A wonderful read, I determined at once to seize the day and make the very most of our summer together to make sure it was our best yet. And that is has definitely been.

Natty is 5 now, and for the first time I am not constantly crippled with worry about her health, either keeping her in quarantine pre or post heart op, or scared to meet up with other children for fear of the infections we would contract. Don't get me wrong, I still shun the viral soup that is those ball pit play places, but on so many levels, this summer feels as if we are back on track somehow.  There has been some hayfever, a temperature and some painful constipation, but nothing worrying (touch wood).

And so, boosted by Mel's positive take on life, and thinking about how much easier life is now that we don't have to take pushchairs and slings and breast pads and baby food and nappies and 3 types of nipple/bottom/skin cream and several changes of clothing and huge kit bags and toys and syringes for tube feeding and medication, we threw ourselves into.... SUMMER!

Family volleyball at sunset

Our secret?  Well, I made a conscious decision to let everything go except having fun and feeding the kids well. The house is a mess and I look as if I have come through several hedges backwards. The blog has been given the bare minimum of attention. I have a pile of ironing that is scraping the ceiling. There's playdoh in the bathroom mat. I found lego in my knicker drawer. The inside of my car looks like a Damien Hirst installation, BUT I have admitted that help is not an admission of failure, so once or twice a week I have invested in Jodie, our babysitter, so that I can get the food shopping done, catch up on essential admin, or even hit the sack after a run of bad nights. Bob has been working in the US, so this isn't really too much of an indulgence. (As it happens we are eligible for direct payments to cover the cost of such respite, but I haven't found time to investigate that route yet.)

We've had a whale of a time, some real hoots and quality moments. Everyone has done something they wanted to do and there haven't been too many arguments. Honestly, I've only shouted once or twice and am actually quite sad that the holidays are coming to a close.  Natty is reliably dry during the day and is now conversing happily and able to play imaginary games with Mia. Suddenly the two are playmates, bossom buddies, able to make their own games in the garden. I'm always on red alert, but I have been able to do it from a distance for the first time.

Mia has been old and wise enough to attend some fab drama and horseriding summer schools for the first time. She has come home beaming with pride at her newfound skills and independence, her beauty shining from within that place of self-worth.  Natty and I have spent hours doing puzzles, art, reading, swimming, gardening, visiting zoos, learning to pedal her tricycle, making chocolate cakes, but most of all having fun, giggling, tickling and talking, talking a lot. Her language is improving exponentially, not just sentences now, but questions, made up songs, counting, and jokes (well, if you count talking about farts at inappropriate moments a joke).

The house has been filled with extended family, cousins, grandparents, uncles, aunts, coming and going, staying from far afield, even a distant great uncle from Italy, all stamping their mark on our perfect summer.

But I am tinged with deeper sadness. Why on earth? Our friend Alicia from the US reminded me why when she said 'Hayley, freeze your kids in time at this moment. This is the best moment.'

Of course in a year or two Mia will be wanting to spend more time away with friends, her social diary ever fuller  than ours, then learning to drive and finding her feet in the world.  Boyfriends, parties, jobs, study.
I damn well hope and work towards the day that Natty will follow suit in her own way.

Natty hoses down the dry log pile!

And of course this is what we want, we are building beautiful bows right now from which to spring the arrows that are our children forward into independence, into the big wide, often ugly world, with integrity and self-belief, confidence and ambition.

But Natty has Down's Syndrome. 

Won't the rest of her summers be like this one, spent happily under my wing, a forever-child?

No.

The bow we are creating is more complex and is taking some specialist craftspeople to work on it with us, but we aim to launch that arrow in the same way as its sister one day. We'll monitor its flight path closely, put I feel sure she will fly very nicely thank you.  Maybe not as far, but all by herself.