Friday, 30 October 2015

26.2 for the DSA and my Ru.

#RunningForRukai: Road to the 2016 London Marathon for the DSA 

In April 2016, I'm going to attempt to do something I never dreamed possible for someONE I never dreamed possible - toe the line of the London Marathon and conquer those 26.2 miles in support of the Down's Syndrome Association and my gorgeous son Rukai, who has Ds. Rukai is a boisterous, energetic, engaging and very typical (yes, you read that right: typical!) little boy whose smile could light up Wembley. I wish everyone on earth could spend ten minutes with him, because the world would be better off for it.

Growing up, I never thought I'd need to call on a charity in my lifetime. Today, my gratitude is boundless. The DSA has supported Rukai and our family since day dot. They will continue to support Rukai long after we are gone so I am more than happy to support the DSA while I am able, and I'd be so grateful if you would too. And here, I'll tell you why...

Our little family had a ridiculously negative start. When Rukai was born, we were met with pity instead of congratulations. Whispers instead of smiles. The first interaction with a pediatrician after he was born was a registrar frowning as she said "you know why I'm here..." The clinic where I'd seen a specialist midwife for months was just down the hall, and it was a clinic day so she was probably there. But no one thought to ask her to come, someone I knew and trusted. Instead, we were surrounded by strangers with frowns. No congratulations, no he's beautiful, only "you know why I'm here..."

When Rukai's confirmed diagnosis was delivered a couple days later, I had been lying in the hospital bed holding him when a doctor and four other people (two whom I'd never seen before) paraded into my room, stopped in front of the bed and looked down at us. The doctor failed to notice Rukai's Dad wasn't present and began to speak. I had to stop him after he'd already revealed the news and asked my mother to go out and find my husband. We were later given worse case scenarios about what Rukai 'will need'. Four years on, few of those purported necessities have materialized. This place in which we live is most certainly not THAT place. And what Rukai really needs is love, education, friendship and a happy life, just like any other kid. The rest is periphery.

Sadly, the Down's Syndrome Association has heard dozens upon dozens of these kinds of stories and have cleverly developed a programme called "Tell it right, start it right" to help midwives and other medical people understand the nuances of delivering a diagnosis in a supportive, realistic and positive way, not with outdated facts, labeling, and an overabundance of pity. Now that Rukai is nearly 4, we know the reality of raising a child with Down's syndrome, and let me tell you - it is absolutely nothing like the doom and gloom we were led to believe! Rukai is just Rukai. He is not Down's syndrome.

I desperately don't want anyone else to have such a negative start. Please help me make sure they don't. Whether you can afford £2 or £20, every penny helps the DSA deliver this and a host of other programmes which support people with Ds, their families and all the professionals who provide support to us all day in and day out.

In the meantime, I will leave you with this thought...

The London Marathon is full of wacky costumed fun runners, most of whom are probably faster than me, even in costume. So I expect I may get passed up by a banana, a phone box, a leprechaun and a pair of testicles but as I live and breathe, I'm going to cross that line in April. For the DSA, for Rukai and for everyone who benefits from this amazing charity.

Now it's time to hit the bricks. I got this.

Please support the DSA here:

Blogging about this marathon journey here:

No comments:

Post a Comment