Why I write my Down's syndrome dad blog

 
Rosie and her dad Thomas

The Future's Rosie recently won "best new blog" at the MAD (Mum and Dad) Blog awards. In it, Thomas Bachofner documents the progress of his two-year-old daughter, Rosie, who has Down's Syndrome. But why does he blog about it?

I'm a graphic designer from Cheshire, not known for writing or reading any books. So it came as a surprise to me that I could even string a sentence together, let alone write a blog that is well received - I'm guessing it's because it comes from the heart.

My site is about Rosie's achievements, such as last week when she stood up for the first time, but it also gives me an opportunity to do my little bit towards raising positive awareness of Down's.

The first post was published on 14 February 2012 but the idea to share our story with the world came much earlier.

Thomas' list of 'what ifs?'

  • What if I don't ever get used to the inevitable stares from the ignorant corners of society?
  • What if Rosie can't ever walk?
  • What if Rosie attends school and she's the only person in her class not to get a party invite?
  • What if she's bullied and picked on by her peers and she thinks they are her friends?
  • What if name calling leaves a lasting mental scar on her and/or her brothers?
  • What if she becomes too dependent when she's older?
  • What if I become so protective it affects her ability to become independent?
  • What if I can't do enough to help her reach her full potential?
  • What if I can't afford the extra classes or development tools she could really use to her benefit?
  • What if she does need that further heart surgery in her twenties?
  • What if... and the list goes on

When my wife Karen and I learnt that our unborn daughter had Down's syndrome, it was a shock, and it didn't feel like anybody understood our predicament.

As a parent, you assume that everything will be fine. Our two boys, Harry and Joe, were born without complications. But we were told about Rosie's condition in such a negative way that we thought it would change our lives drastically for the worse.

I found that all I wanted to do was read real-life parent stories from people in our situation, not the science and figures you become bombarded with when searching online. But there weren't many Down's syndrome parenting blogs around at the time and even fewer were written from a dad's perspective.

I started to jot things down and was surprised to find that it helped get my emotions out. My scribbles eventually turned into The Future's Rosie which is having more of an impact on me and others than I could ever have predicted.

Initially it was a handy way of telling my friends and family how I was feeling and it meant I didn't have to repeat myself over and over at what was a delicate time for me. But many of them began to share it with their friends and, before I knew it, my blog was being read by hundreds of people.

I've shared lots of private thoughts about her development and how we as a family are all pitching in to help her.

Rosie playing electric keyboard

Last year I wrote about what I called "a barbaric-looking developmental aid" given to Rosie by her physio. It's a standing brace and we couldn't get her to use it. She hadn't wanted to walk or crawl, so we got Rosie's brothers to stand on the sofa and blow bubbles which made her reach up and support her body with her legs in order to strengthen them.

I've covered learning the Makaton sign language, feeling full of pride when my young sons Harry and Joe stood on stage at school to give a talk about Down's to 250 kids, and I wrote about the weekend we all survived without Mummy being there.

One of the hardest things I have done is write about Rosie's surgery. Children with Down's syndrome often have related heart difficulties and Rosie was born with a hole in the heart which needed fixing. My blog entry on that day included post-op pictures of my daughter - it felt like these might be useful for parents to see, if they too have to face the same operation with their Down's syndrome child.

As Rosie got older, I quickly learned that my own pre-conceived ideas of Down's were both ignorant and outdated. I wanted to teach others about the reality in a non-patronising manner, so decided to use myself as an example in my own social media campaign. I did it from Rosie's perspective and called it Things I've Taught My Daddy.

Other Down's parents blogs

There is an increasing number of blogs written by parents of children with Down's syndrome.

Down's with the Kids

A Different View

Orange Juice Flavour Sky

Downs Side Up

As with the blog, before I knew it the captioned images I shared on Facebook and Twitter had been seen by thousands worldwide.

One of the messages I tried to communicate was that people with Down's are people first and foremost. They are more like their families than they are each other, though many people still find it difficult to see past the physical characteristics associated with the syndrome.

Life with Rosie really is very normal, in fact she has been a far easier baby than both her older brothers were. The whole family love her to pieces and I genuinely wouldn't change a single thing about her - well, maybe the volume of her cries when she is hungry.

After all "Down's syndrome" isn't who she is, it is just a part of her.

Thomas Bachofner blogs at The Future's Rosie

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