Tag Archives: mumsnet

This is My Child: Why I’m Supporting the Mumsnet Campaign

This is my child. I call him (on the blog anyway) Mr Boo, or Boo for short. He is 16.5 months old. Well I mean he is and he isn’t. He was born 11 weeks early, so he’s 14 months actual age. He is the younger brother to Sissyboo, who is 5 and marvellous. He is one of the happiest, smiliest children you’ll ever meet. He has blond hair and piercing blues eyes. He also has bilateral brain damage (PVL) caused by him contracting meningitis at 3 days old.

The brain damage means that he has likely cerebral palsy (I say likely, we are 99 per cent sure but are awaiting the results of other tests for other, worse things) and epilepsy (in his case the ‘catastrophic’ infantile spasms). At 16.5 months he can sit, roll, crawl or walk. He may do some of these things eventually or he may not. He is beautiful even though his life is hard.

This is my child. But when others look at him, and boy have they started staring recently, they see all sorts of things. Some glimpse the challenges of his life. The many weekly appointments, the daily therapies, the disrupted nights, and some feel sorry for us. I hope they can also see how amazing it is he’s here. That he survived. That he isn’t cast down by his difficulties. That he is tenacious and inspiring. That he is a little boy. That he is a toddler, he just can’t toddle.

Others see different things. Sometimes I have to guess what they’re thinking. Sometimes they just go right ahead and tell me. Like the woman in the park, where my daughter was playing while I worried her brother might never be able to, who after I answered her question about how old he was (I always give both ages, so she knew he was premature) said ‘Haven’t you got him sitting yet?’ No:  and it’s all my fault, right? Because 1.5 to 2 hours of physio a day on top of appointments, feeding, looking after him, oh and his sister, and my job and sometimes remembering to sleep and feed myself isn’t enough. Because I should be able to slap the metaphorical holes in his brain on the wrist and tell him to do what they’re told.

Then there was a waitress in a cafe who when I said we didn’t need a highchair for Boo (he can’t sit in them) said ‘Oh you’ve got a naughty one then’. I didn’t know whether to do her a crash course in premmie/SEN baby parenting, run out or cry. I stayed, cried inside and spent a horrible evening sobbing when I got home. And his sister was there when she said it. She was angry. As always, I should have taken my cue from her. She is 5 and as I’ve blogged about before she could teach so many grown ups about how to deal with ‘disabilities’ or ‘abilities’ as she calls them.

I could go on, but you get the picture. These experiences and so many others like them are why I fully support the Mumsnet This Is My Child Campaign. I have read so many wonderful and powerful blog posts and tweets from its supporters documenting the prejudices they face, as if their kids’ conditions weren’t enough to handle. Much of the focus has been on invisible conditions such as ASD, ADHD and SPD. I fully understand this. My oldest friend has a 6-year-old recently diagnosed with ASD and another close friend has an 11-year-old diagnosed with Aspergers and watching the last decade of her battles with 4 different LEAs has been heartbreaking at times. Boo’s epilepsy and neurological problems mean he is at ‘high risk of cognitive impairment’, as the letters say. Children with physical disabilities face different challenges and are not invisible in the same way. But the prejudice is still rife. The myths are no less prevalent. The words still hurt.  And the heartache is as real.

So please get behind the This is My Child campaign by writing your own blog post, contributing to the online forums or tweeting your support. This is my child. And, if you do so, he and I will thank you for it with all our hearts.

This is My Child Mumsnet

When Bounty Brings Other Gifts

As many of you will know Mumsnet has recently introduced a new and much-supported campaign, brilliantly called the Bounty Mutiny (I do love a good pun), designed to prevent commercial reps entering maternity wards at a sometimes difficult and always emotional times to new mothers and selling them products. Some of the stories of harrassment told by women who had to deal with aggressive saleswomen in these valuable and vulnerable moments make for very uncomfortable reading and are clearly utterly unacceptable.

I recognise something of these stories in my own experience of having had Sissyboo. After a difficult labour that ended with an emergency c-section and much blood loss, the last thing I wanted was to be asked a gazillion questions by a stranger and offered various services I didn’t want. I remember buying an exhorbitant footprint moudling of Sissyboo’s feet from her just to get her to go away. We have a lovely ceramics cafe near our house and I had planned to go there to get a tile with her footprints on when we’d come home from the hospital. It would have been at least as nice a keepsake for half the price and it would have been lovely experience for us to share.  (I did it with Boo on the day he should have been born.) This, by contrast, was not a happy experience. But to be honest, in the grand scheme of things, the annoyance was fairly minor. And I still proudly hang the tile on my bedroom wall next to Boo’s.

As people who read my blog regularly will know, I am passionate about the many causes and political campaigns I back. And I have read some very powerful posts by experienced and eloquent bloggers, especially Emma at Me, the Man and the Baby, on this subject. At the same time, I am very sympathetic to recent posts on other favourite blogs, including Not Even a Bag of Sugar and Crazy With Twins, who have spoken out in opposition to the campaign.

I’m not a sitting on the fence kind of person, usually, but I abstain on this. The first reason is purely pragmatic. There are so many other even bigger and sometimes frankly more devastating problems in ante- post- and neonatal care that exercise me on an hourly basis, that I feel I have to pick my battles. And this skirmish, though one I totally understand and back in principle, is not one I feel I want to be stood up and counted in for.

There’s also another reason and that’s what led me to blog about the subject, following a Twitter conversation with Emma at Me, the Man and the Baby last week. And that is my second experience with a Bounty rep, aka an extemely kind and compassionate woman, who gave me a literal, as well as figurative, shoulder to cry on at one of the worst moments in my lives.

Mr Boo, as you may already know, was born at 29 weeks. I had no warning. I was 65 miles from home interviewing at work and was whisked off in a speeding ambulance to a hospital I’d never been to before when I went into spontaneous labour. After giving birth to Boo he was put in an incubator and taken straight to the NICU. We waited for my placenta to do the right thing, but it didn’t. The first failed attempt at manual removal left me with heavy blood loss and I ended up in the operating theatre, sobbing my way through a removal under epidural. I spent all of that night alone, missing my partner and daughter, in shock, hoping they wouldn’t need to give me the threatened blood transfusion, emailing work colleagues on my iPhone to explain what had happened and reading Not Even a Bag of Sugar.

When I’d gone into labour, I’d asked The Grumposaur to bring me a bag of clothes. I was in my interview finery and had no maternity bag packed. In his panic, he brought me a pair of pyjamas (phew) and lots of clothes for Boo, who couldn’t wear them (or any clothes, for that matter) until many weeks later. He bought no toiletries. I didn’t have a towel or a toothbrush, shower gel or a hairbrush.

It was while we were waiting for the blood loss to stop and the epidural to wear off so that I could see the little boy, whose face I couldn’t even remember, when the Bounty rep came in. Despite my extreme loneliness, she was the last person I wanted to see. But I will always think of her now as guardian angel of sorts.

Within seconds of entering the room they’d put me in so I didn’t have to be around new mums and their babies, she realised I must have a baby in special care. She introduced herself not as the Bounty rep that the familiar white envelope she was carrying announced her to be, but as the mum of premature twins. She asked me what had  happened and we talked and shared stories.

I learned more about having premature babies from her in a 10 minute chat than I had learned in my 35 years of existence to date. Her twins were nearly 2. They both were delayed but doing well, although I think one had long-term problems probably not too disimilar from Boo’s now. She asked if Boo had had a brain bleed (I’d no idea what a risk these were for premmies and how much they would come to alter our lives). But nothing she said frightened me. She was calm, loving, a proud parent and living proof it would be OK. Whatever happened, it would be OK.

She told me what to ask the doctors. She advised me on practicalities. She saw my chaotic hospital bag and raided unopened Bounty envelopes to get me lots of packets of baby wipes, Johnson’s shampoo and three hooded, newborn Persil towels so that I could have a shower.

She said she looked forward to seeing me the day after to catch up and find out how Boo was doing. In the event, and after much deliberation, I’d gone home. I never saw her again, but the impression she made on me was as indelible as Sissyboo’s footpring moudling and I will always be grateful to her.

No doubt readers will already have made up their mind about which side of the Bounty Mutiny they are on before reading this post. Whatever happens, though, I just hope that people remember that not all reps are the same.

The bounty some of them bring with them is just priceless.