Campaign Bloggers

Blogging with Heart, 

from the Heart and for Support.

It this year's BritMums Live I was honoured to be part of a discussion panel comprising Annie from Mammasaurus, Kylie from Not Even A Bag of Sugar, Liska from New Mum Online and I (Downs Side Up). We joined to share our own takes on the subject, for what proved to be an emotional session for the speakers and those listening. (There were a few tweets at the time about 'dust in people's eyes'.) It seems that there are many differing motives for writing with heart, and that this inspiring variety of blog achieves more than at first meets the eye.

Then last week Jennie Henley who writes Edspire and I were asked to join Jenni Murray for a Live chat on BBC Radio 4 Woman's Hour on a similar topic: Campaign Bloggers. 
You can still listen to the interview here at 26 minutes.

The BBC researcher was wonderful and we chatted at length on the phone. She asked me to think about why Edspire and my own blog were so successful, how they helped us and others, what brought people back to them? She asked about exactly how Downs Side Up was conceived. She asked what other projects the blog has led to. She asked about the blogs I read for pleasure and why. Of course there wasn't time to talk about all of this on air.

So, for those who couldn't make the session at Britmums, for those who write a blog from their heart, and for those wanting a fuller picture than Woman's Hour had time to allow us, I have tried to summarise what Campaign Blogging is all about.

Why?

There are as many reasons for starting a blog of this nature as there are stories in the world.

• Annie described wanting to talk through a particularly taboo subject from the safety of her blog, and in doing so she reached out to other women in the same situation who felt alienated, misunderstood and lacking in support. I recall Spencer from A Dad Called Spence saying that if you have changed one person's life through your blog, then it is a success, and Annie's has certainly done that many times over.
• Kylie also described a lack of support when her son was born prematurely, and her main motive for blogging was as a way of gaining support for herself through that intensely difficult time. Of course she helps thousands of premmie parents now and works for Bliss Charity but that, she claims came afterwards.
• Liska is a selfless blogger and a shining example of one of many who write to pull others together, to keep the memory of her friend Multiple Mummy alive. She helped organise the #Healing4Kerry time of thought and prayer that many of us joined in, and this must have given comfort to Kerry before she died and to her family ever since. Never is the power of the online family more keenly felt than at times of tragedy.
• Jennie also writes to create a legacy for one who was taken too soon, her daughter Matilda Mae. She recalls that the writing all started as a way of working through her grief, and in doing so not only does she spread awareness of SIDS, but fundraises tirelessly for the Lullaby Charity. 
• For me, Downs Side Up was born out of a realisation that my perceived knowledge about Down's Syndrome was completely wrong when Natalia was born. Fear and ignorance made me afraid to love her. I began writing so that no other new parents would ever feel that desperation, to buy them bonding time so to speak, by gently changing perceptions of the condition from within hearts. I spent many evenings researching online following Natty's birth. There weren't any blogs about family life with Down's Syndrome back then. In fact most of what I read was outdated and downright depressing. The charity sites were a font of knowledge but remained neutral in tone. When the time came to write a blog, when Natty had started school and I had time on my hands, I decided to write about exactly what I wanted to find in the early days myself, a positive, realistic portrayal of everyday life and a good dollop of information, resources and ways to get support. I was surprised to find, like Jennie, just how cathartic and healing blogging was. There were, and still are, occasions when I cry as I write, working through some old emotion, guilt or fear which often lies unrecognised until the fingertips hit the keyboard.

Readership?

So who reads these high profile campaign blogs?

• Being able to share blog posts with family and friends has enabled me to explain feelings that are hard to put into words at the time, or indeed face to face with someone. This works both ways of course, because a blog reader can sit in her pyjamas, with tea in hand, in total privacy and read, at any time of day or night and cry, shake, shout, smile, and whatever she feels remains private. 
• I guess that some blogs remain niche, with a small readership and a very specific topic range. I always assumed that Downs Side Up would be read only by family members of those who have DS, and was pleased to find professionals joining the ranks and even more suprised when the majority of readers turned out to be parents with no experience of Special Needs or even those without children at all. This is the point where a campaigning blog becomes powerful. If you can make it relevant for all then you are drawing people in and changing the way they think with a smile or a chuckle or a tear or an ahhh with a tale they can relate to.
• Again the subject matter of the blog will determine how readers interact with the writer. Some are showered with supportive comments, for others readers prefer to contact the writer privately for support, or indeed to remain anonymous. I was taken aback at Britmums Live for example when a handful of women spoke individually to me to one side about their experiences of testing, screening, terminations, losses and babies and how reading this post or that had supported them or a friend. Unless I had met them I would never have known that, and so we must continue to write the way we do, for we can never sure of the extent of the positive impact it is having on the lives of a significant few.

What makes a successful Support Blog?

As we identified, a successful blog can be one that helps just one person. But what keeps someone coming back to the blogs they know and love?

• For me the personality of the blogger has to shine through.  I want to read posts from people I would genuinely like to share a coffee or a glass of wine with. Their motives have to remain clear and they must have integrity. It's the blogger who can't tell you how many 10s of thousands of visitors they have each month because it doesn't matter.
• Many campaign bloggers seem to keep their blogs clear of  too many reviews, sponsored links and advertising. This was my pledge to help the message remain clear, although blogging and the associated travel and outlay leaves many very out of pocket. There is nothing wrong with making money from your blog and perhaps it is simply a balance I haven't managed to strike yet.
• An appealing campaign blog has mass appeal even if the campaign itself may only affect a few. It all about a balance of posts that capture interest. It will be well written and visually enticing.
• If you are fundraising, events need to be unique and different and easy for all to join in and give.
• Although many blogs deal with subjects that would make us all angry I think there is no faster way to make someone switch off to reading than prolonged ranting. Drawing people in to walk alongside you is always more effective than demanding them to do so. It's like the story of the Wind and the Sun having a competition to make a traveller remove his coat. The gentle Sun wins every time over the blustery Wind. If you are working through some emotions that make you angry and blogging helps you deal with that its worth doing just for yourself. You can always hit the delete button later...
• The most powerful blogs with heart draw people together, through linkies, round-ups, guest posts, interviews, charity events, trips, trending hashtags and so on to make people feel part of a shared goal.
• I try to visit and support as many other blogs as I can, but I prefer to write without influence from others to keep things unique and fresh. If I am writing about a particular topic I won't read any other blog on that subject until it is finished.

Where do we go from here?

The blog often feels like a hub or central core that all else eminates from. It is an organic force that goes where it is needed.

• Charities have realised that bloggers are an incredibly powerful tool for spreading their word, raising funds and supporting others. Much of the writing I do is now for charitiy blogs as well as my own. 
• Then there are articles for newspapers, journals, interviews with the media and requests for quotes and comments. Bloggers are beginning to be considered as writers in their own right.
• Bloggers with heart are driven to reach out to others and often find themselves doing training or public speaking in workplaces and schools to achieve that. Again, a warm/strong/memorable personality is key.
• Politicians and parliamentary activists are getting bloggers on board too. The Saatchi Medical Innovation Bill and Disability Abortion Law are two campaigns that I have recently been asked to be involved in.

Who do I read?

Just Bring the Chocolate because she keeps it real.

Pippa Story of Mum because she got me doing craft activities at 43.

Aunty Her Melness Speaks because she is wise and warm and supportive and consistently right. I think she'd tell me off if I did something wrong.

Wally Mummy at Just a Normal Mummy because she says 'vagina' a lot and it makes me giggle like a school girl.

Thank You Body for What You Have Done

As many of you know I recently took my clothes off, save for a mismatched pair of funky socks, for a photoshoot. They are at the bottom of this post, but I'd ask you to read about my reasons for doing it first.

Primarily it was Kate On Thin Ice who invited me to do it, she who writes an inspirational blog about boosting women's mojos and giving them confidence. 

Yes, I thought, I will show the world that we must celebrate our Mummy bodies, in all their stretched and squidgy glory for they have created our beautiful children.

Then I thought I might as well raise a bit of cash for my chosen Down Syndrome charities while I was at it. Nothing like getting your kit off to get people to look up and give, I figured.

£3500 WAS RAISED FOR VARIOUS DOWNS SYNDROME CHARITIES. THANK YOU X

So, at 43, I did it. My photograher friend at Photography by Maryna donated her time and expertise, along with a make-up lady Julie of Angel Face and Geoff produced a video of the preparations and my reasons. But I found the day strangely emotional, as this behind the scenes photo shows.

The tears behind the bravado

Why was that?

I thought at first it was because I was thinking of all the families just starting their journeys with their little ones with Down's Syndrome and remembering that tricky time of acceptance and adjustment for us.

But no, it was more than that.

I then thought perhaps it was because the last time I was naked in our house with a group of people around me, it was at the planned home birth of Natalia. Perhaps my body was remembering, revisiting the shock and worry.

It was only when I was chatting to a journalist one evening about the photos and why I wanted to share them with other women, that I suddenly realised why that day had been so emotional....

Like all women, my body can tell a story, the story of my life.

The growing up and adjusting to my new shape, the hideous toes I hid until I was into my twenties and moved to Cornwall where flip flops are de rigeur, the growing to accept and gloss over the bits you don't care for and make the most of the bits you do. 

Then there was the stuff it has lived through the horse-riding falls, being married to husband number one Mr Aggressive, the keep fit fads and phases, the parachute jump, the minor RTA.

And then I turned my thoughts to babies

I have been pregnant a total of 7 times. It's quite a lot and it's not something I think about every day. But they are there as part of my journey.

We first became pregnant unexpectedly quickly on our honeymoon, a paradise beginning in the Maldives. 5 weeks later that ended amid blame: the sun, the diving, the rum. I was desperately upset, for life is supposed to go exactly how you plan it when you are first married isn't it? I Googled and researched and planned a detox. It would not happen again.

I became pregnant straight away after our second attempt. We were already more cautious, keeping the pregnancy quiet even from family because it didn't seem real. But it was very real and the morning sickness kicked in with a vengence. I was so desperately ill, lost weight, was listless and struggled to keep down dry crackers and San Pelligrino water. Anything else was unbearable, even the smell of food. Bob had to eat in the garden at one stage. Gradually the illness passed and out came our beautiful, strong, feisty, dark Mia, the image of her father. She was an undiagnosed breach, but luckily we managed.

Being a Mum was wonderful yet all consuming. The tiredness continued, Mia didn't sleep well and breastfeeding on demand continued for many months. The last thing on my mind was another baby at that moment. But, just around the time of Mia's first birthday I became unexpectedly pregnant again. It seemed too early, but I knew I would have coped, but by the same token I was wary of my body's ability to sustain this pregnancy. I had a 50/50 chance right? The track record showed it.

I was right. Again at around 6 weeks I miscarried.

Lying on the sofa in pain, covered in blankets. I began to wonder what was wrong. Why was my body rejecting these babies? Surely there couldn't have been something wrong with both of them. My diet was incredible, I was taking Folic acid, I was only 34. Was that too old?

My GP said there was nothing to worry about and that they would only investigate after 4 miscarriages in a row. Gosh, what if that happened. 4! I wasn't sure if I could take the emotional trauma.

We moved house and quickly pregnancy number 4 was conceived. This time when I saw the blue line, there was no excitement at all. I just thought, 'Right, let's give it our best shot. Here we go again." It became a challenge.

I rested as much as you can with a 1 year old, lifted nothing. But to no avail.

I sat at a baby sign class, looking around the room at other pregnant Mums, so happy and oblivious to my pain. Tears plopped silently onto my lap. Why was it seemingly easy for others and not for us? A selfish thought.

My head knew we were lucky to have Mia and I knew other's pain was much worse. All our losses were early but my heart was growing fearful that I would not be able to make a sibling for our firstborn.

It wouldn't have been the end of the world, we would have coped, adopted maybe. But those were my honest raw feelings of the time.

Pregnancy number 5 came fairly quickly afterwards. I getting frustrated with my body, cross and angry, impatient too. I began searching around for more help, a definitive answer.

I went to a herbalist and Foresight who tested a sample of my hair and prescribed various vitamins for the shortfalls it highlighted. If any of that works it was too late. Again the dull ache that signified the end. The lack of sickness or hideous metallic taste always a sign it would come. I was clutching at straws I guess.

Bob found it hard to comprehend my dark despair. He urged me to relax, that all would be fine, and that anyway we should be grateful for having Mia. I guess for many men, until they see a baby it is hard to feel a pregnancy in the same way as a woman does. She lives it after all.

So, now on the regime of various vitamins, Natty was conceived. I panicked, was desperate to know if all would be fine. I paid for a private ealry scan at 6 weeks. The heart was beating and we were to go home and wait. Nothing more could be done. There were no answers.

The metallic taste came and the nausea rose, I knew these were positive signs. Less nausea than with Mia but never-ending vomiting right until the day she was born. It was miserable but I clung to the notion that this was a good sign. Family tried to take over when they could, to entertain 2 year old Mia. CBeebies played on a loop in between.

When Natty arrived, and there's enough written on this blog about her entrance into our world, people said things about the state of my eggs, my age, why hadn't we had 'the tests'. All those questions making me feel that I had caused her medical problems. Again the body was at fault. I feared my marriage would be over because of an extra chromosome. My body looked fine on the outside but it must be decrepid on the inside. Did all those other miscarriages have DS too? The genetic counsillors could not tell us. Apparently there are no answers to some of life's hardest questions.

It's funny how your mind works when you are in shock because in reality Bob bonded with Natty far earlier than I was able, saying she would be just fine, his Italian belief in family outweighing anything else. And of course babies with DS are born to women of all ages and backgrounds.

But here is the thing:

Natty is not a mistake, nor an error. She is just as perfect as Mia. They are incredible and we made them. Not only that but my body produced every single drop of milk they both drank, for Natty that was expressed life-giving milk that passed down her nose tube for 3 months. When the tube was removed she breastfed successfully for 18 months. Thank you body.

After a period of readjustment, almost mourning that baby we thought we were expecting, Natty drew us in, melted our hearts, began her life long work of teaching us and the world around.

She will face obstacle in life, but we are here to try and smash them out of her way. Perhaps, deep down, this is me trying to make up for that teensy bit of guilt, that I too was initially a part of those barriers. 

Maybe that's why I throw my whole life into changing things for others, not ever wanting any other parent to feel the desperation I felt in those early days, and working to knock down and obliterate those obstacle for her and others like her. My head knows I didn't cause them but my heart is determined to smooth the way.

A couple of years ago came the very last pregnancy. A dangerously ectopic one that found its way despite a coil in place. That time I was relieved when no medical intervention was needed to save me from surgery, that my body dealt with it by itself. 

So that is why I chose to take my clothes off. To thank my body for the babies, those with us and those lost. To thank it for feeding our girls for 3 1/2 years between them.

To shout out to bigots like Frankie Boyle that parents of children with disabilities are like any other, not the fuddy duddies they like to portray us as. 

And, guess what, we are wives and partners and we are still desireable. So there.

LOVE

PRIDE

MUSIC OF LIFE

CHROMOSOMES

ENLIGHTENMENT

Reader's Story: Sandy Lawrence

Today's story is from a lady who is a great friend of mine, she also happens to be the chair of the Cornwall Down's Syndrome Support Group as well as being on the board of the DSA. She is a force to be reckoned with and certainly someone you can count on for loyal support if you find yourself in a difficult situation. I think it took me over a year to contact her in the beginning...

Matthew in Disneyland

I am not a natural writer and have started this piece so many times.  I guess what I really want to say has to come from the heart so here goes.

I came to motherhood relatively late and went back to work 6 weeks after my first child was born. It had taken me 5 yrs to conceive and carry my baby to full term so it was a bit of a surprise when I fell pregnant with Matthew when James was just 5 months old.

I refused all testing as I had had 3 miscarriages and thought no more about the possibility of having a child with downs syndrome.  Matthew was born on 2^nd June by elective c-section and I was told almost immediately that they thought he had downs syndrome. I was overwhelmed with sadness especially for the medics whom I had grown to know and for whom I thought it must have been so difficult for them to tell us.

I also remember being so sad that I thought I had ruined James’ life and that he would be forever saddled with his disabled brother.

Matthew had a very poor start to life health wise and stopped breathing at 10 days old.  He was put on life support and for a couple of days we sat by his cot just willing him to live.  I made so many pacts with God that it didn’t matter that he had downs syndrome I just wanted my baby to live. 

He pulled through and we got on with our new life.  I gave up work and we settled into the inevitable round of appointments that you will have heard about from other writers.  At six months Matthew had another huge setback when he developed infantile epilepsy.  Although he no longer has fits, the impact of this early setback has had a lasting and profound effect on him, affecting his ability to speak.

Through Matthew I have met some amazing people, some of whom I now consider to be life long friends. What is most fascinating is to watch the journey that parents take.  To see them blossom into everything that their child needs and so much more.  To see the capacity that parents like Hayley have, not just to be an incredible parent to their child with downs syndrome and their other children, but also be the crutch that other parents can lean on when they need to. Many of us would not have thought that we had this in us and yet when tested almost beyond what we can endure, time and time again we see parents of children with all sorts of additional need go above and beyond to support other parents on their own journey.

Hayley and I laugh now about the number of people who told her she should contact me in the early days after Natty was born, and those that asked me if they could give Hayley my phone number. I am so glad that when she was ready she did contact me.

I am often asked about the ups and downs of raising a child with downs syndrome and I explain it like this: It is the most exasperating, emotional, difficult, amazing wonderful thing that I have ever done, and I would not change it for the world.

Readers' Stories by Michelle Bailey

Michelle Bailey sent me this powerful story about her Uncle and Aunt and their 'miracle' son who arrived after a series of miscarriages. Jack doesn't have Down Syndrome but the pressure to test was immense for his parents. It is a very poignant tale, the first of those I am showcasing in the run up to World Down Syndrome Day 2013.

This beautiful family was completed by Jack

Prior to conceiving, my husband Denis and I had already decided never to have amniocentesis or CVS. We had followed the Foresight pre-pregnancy program well before we decided to try for a baby. So, as all was planned, down to diet, mineral & vitamin supplements and lifestyle, we felt that we were very well read up on pregnancy & tests. We made an informed, conscious decision never to test. (At the same time, we also made informed, conscious decisions to opt for a home birth, to refuse the vitamin k injection, never to immunise, to refuse antibiotics unless absolutely necessary, and - horror of horrors to sleep with our baby in our bed and that I would breast feed until the baby naturally weaned itself - but that’s another story!)

We had a history of 5 miscarriages before our son Jack came along - all took place very early in the pregnancy - approximately 6 to 8 weeks. Doctors in the UK do not start to investigate until after the third miscarriage as a matter of course.

After the miscarriages started to occur, we also read up on causes of early miscarriage and at the time (late 1990's) new research was suggesting that anti- phospholipid syndrome (a blood clotting disorder) may cause early miscarriage. I had a mini stroke at age 20 and so, after doing my own research (no internet then!) and without discussing with a doctor or a midwife, I followed my instincts and self-medicated and simply took half an aspirin a day prior to & throughout my pregnancy. It seemed more sense given my medical history - that blood clotting factor was the issue - not a hormonal one. 

This sixth pregnancy was monitored closely as soon as pregnancy was detected. Weekly, since week five with an ultrasound and weekly injections with progesterone. We had made our feelings known about not wanting any invasive tests from the start. I was not even at all happy with undergoing weekly ultrasounds, but had to trust all would be well. We were very happy with our level of care, and with the staff at the small, local NHS district general hospital which served a primarily rural catchment area. 

However, as we were nearing the stage of gestation where tests could be undertaken we were constantly asked why we would not have the tests. Almost weekly, I was reminded that I was an "elderly primagravida" - 39 years old they would point out - "high risk".... We then would quietly point out that we had made our feelings known, they were recorded in the notes and as we were already "high risk" for miscarriage, “no tests thanks”.

We always felt that the midwives assumed that we were uninformed and stupid and irresponsible and that they couldn't believe we would make that decision. Their attitude meant we never did admit to the half dose aspirin!

Assumptions about us were clearly made and instead of simply having our wishes respected we found that we finally had to spit the dummy and angrily justify our decision to a midwife and make her record our notes in such a way that we were never asked the question again!

My husband Denis pointed out that he was a special needs careers counsellor - working closely with his young people and their families. I was fortunate to know people with special needs including having a family member with Downs babysit me as a child. We had to get angry and say that the thought of aborting a baby because it was not deemed "perfect" or "normal" we personally found distasteful. With hindsight - I wonder if we would have had an easier time if we had just said "for religious reasons" we were against tests. 

But why should we have to lie?! Our wishes should have been enough. No way were we going to jeopardise this special pregnancy for Down, Spina Bifida - whatever condition! 

Finally, because we got angry and raised our voices - we were listened to. Denis pointed out that to have our personal wishes ignored about not wanting to abort a baby simply because it was deemed because of my age "at risk" of not being "perfect" was disrespectful. To be regularly asked why we had not had tests and the implication by staff that we were selfish and misguided was distressing to us.

Our specialist had told us very early on in the pregnancy, that if we could get to the magic 20 week mark we stood a good chance of going full term. We had to get angry and say were were distressed and anxious enough to get to that magic 20 week stage without having further stress heaped upon us. We stated again, that for us, having invasive tests that in themselves could cause a 1 in a 1000 or 2 in a 100 risk of miscarriage was a risk we were simply not prepared to take.

No more were we asked....

Post Script:

5 years later, and by then living in Australia, I underwent a series of blood tests to discover why I was no longer even able to conceive a brother or sister for Jack. The test results showed I had TWO inherited blood clotting disorders. Each with a 50% risk of miscarriage. The hematologist looked at Jack playing on the floor near his desk and called him our "miracle baby". We finally confessed to the aspirin! So after all, it looks like the aspirin and not the weekly progesterone injections had done the trick maintaining my only pregnancy that went full term.

Jack remains our only child. 

We decided we would not go down the route of hormone injections and possible IVF in pursuit of a brother or sister.

We are content with our one loved and much longed-for special “miracle” child.

Every child born is a miracle in our eyes - EVERY child is perfect...................

Some are more “special” than others..... 

And our world is a better place with them in it.