There’s inspiring mums, and then there’s inspiring mums like Emma Haines. Emma is not just an accomplished sub-editor and journalist with a long career at some of the biggest names in UK publishing, she’s in charge of raising the funds needed to help her bubbly son Ted get the treatment he needs for his cerebral palsy – treatment that is hugely effective but not available on the NHS.
Mumspo comes in many forms, and from many places. Life throws inspiration at you from all angles and sometimes, in the most unexpected forms and it’s fair to say Emma has had to dig deep at times to find hers. There’s no pretending that life with Ted’s diagnosis wasn’t hard to bear at first, but you will never meet such a smiley and cuddly boy with so much zest for life.
So much of Emma’s day is about throwing herself into the well-being of Ted, but she’s still one of the most stylish and creative women I know. And by the way, the very clever hairdresser Hairy Jayne in Brixton is responsible for her permanently awesome hair-do. Read on for the low-down for great Wiltshire shopping tips and how to juggle treatments, childcare and family life.
“I’m Emma Haines, an ex-journalist/subeditor and I’ve been married to my lovely event producer and shed/shipping container obsessed husband Rik for five years. For now we have a two-year-old son Ted, but plan to have more children in the (hopefully) not-too-distant future. Because these things are really easy to plan, right?
I have a blog and a Facebook page called Treatment for Ted. The name, while not particularly exciting, perfectly sums up my mission in life at the moment – finding and funding the best treatments to ease the symptoms of our son’s cerebral palsy. It’s my online place to keep everyone updated on Ted’s progress, discuss the various therapies we do and to talk about what it’s like parenting a kid with special needs. It’s also a great place to let off steam on those difficult parenting days we all have.
The blog began when Ted was five months old, in March 2013, which was a couple of months after the big, scary CP diagnosis. He was very ill when he was born, having been cut off from oxygen for a long time during the final stage of labour. So although the news that his problems would be lifelong was absolutely devastating, it also wasn’t that surprising. It just confirmed our worst fears. The grief was so raw and I couldn’t believe this was happening to us. Yet, having a label was strangely freeing; I remember the relief that came from knowing what we were dealing with. It gave me the power to move on from this rock-bottom place.
I’ve always been one for complementary therapies and a more holistic approach to health, so right from the start of Ted’s life I wanted to throw everything I had at healing him. Therapies like cranial osteopathy (we started while Ted was still in the special care unit) and homeopathy have been invaluable to maintaining his overall health, but I had also found some other treatments that sounded really promising. Promising but expensive. With the level of intervention Ted needed, it was soon obvious that we would need to ask for help on this. That wasn’t an easy decision to make – to ask people to help pay for our child’s health is a pretty weird thing but we were close to running out of our own money and I felt like the clock was ticking. Somehow the blog made me feel better about asking for people’s money. Letting them see what a gorgeous kid Ted is and how the funds help him seemed like the least I could do.
Up until this point, the blog has been a great source of therapy to me. It’s hugely cathartic to get out some of the anger, frustration and grief. At times it has been the one thing that has kept me sane. These days I’m in a much better frame of mind about everything so that kind of venting isn’t often needed. Currently I feel really excited about what I can achieve with the blog. I’m planning a design revamp and want to turn it into a resource for other special needs parents with more information on all the many therapies out there. The time has come for a lot more positivity too. Having a disabled child is difficult but it can also be a joyful, life-affirming experience that makes your heart swell – I think people need to see more of that!
As well as being my own worst enemy when it comes to procrastination, even in my most organised moments it’s hard to find the time to fit everything in. We have taken a step back from fundraising ourselves – in the past we’ve done some brilliant events like a fete in a pub, online auctions, tea parties – and are very lucky that others are still stepping up to run marathons and such for us. A lot of my day is taken up with Ted’s therapy and in the few hours a week I have some childcare for Ted, I often end up using them chasing his appointments, doing admin, or working things out for the disabled adaptations we are in the middle of planning. The blog is often the thing that suffers, in that I fail to get the posts up there – although I take every chance I can to write down ideas for posts and there are about 27 half-finished drafts ready to go and loads more buzzing around in my head.
Happy, positive people who get shit done are my inspo. Right now I’m feeling especially inspired by people who are have a lot on their plate but handle it with grace and always put a positive spin on things. It helps me remember that attitude is everything – I can choose whether to be happy or not – and with a few tweaks to my schedule I can get stuff done too.
We moved house last May, from a two-bed London flat to a four-bed Wiltshire house so have some work to do to fill up our new place. I am constantly looking for decorating inspo – tiles, kitchens, prints, fabrics – and ways to make sure that Ted’s space doesn’t become too medical with too much ugly equipment! I have freecyled furniture to paint and cushions to make and a big, unruly garden to tame. Once the structural stuff is done, I’m looking forward to mooching round the local flea markets, like the Frome Independent and Shepton flea market, and picking up some pieces to really finish the place off.”
Visit the Treatment for Ted blog. Visit the Treatment for Ted Just Giving page.