I'm differently sporty with my disabled son (Disability Dads series)
In our final Disability Dads blog entry for the present, James Melville-Ross writes how he and his wife had to have fertility treatment to conceive. But the life and parenthood they worked so hard to achieve didn't turn out the way they had planned.
In April 2003, we learnt that my wife Georgie was expecting twins. We had gone through a lot of tears and effort to get to this point and were thrilled. Finally we could dream about our future with children and start to imagine what sort of people they would grow up to be.
Parenthood so nearly didn't happen for us. For three years we had been trying and for three years the monthly, heartbreaking arrival of Georgie's period would dash our hopes.
After several attempts at IVF with all its probes and invasiveness, we finally received the news we had been waiting for. It came from a small deadpan East European doctor who was in the middle of scanning Georgie's belly, she said: "Yes, definitely two heartbeats," thereby acknowledging the presence of twins.
My eyes strained to see and my heart strained to believe the images on the screen in the dim lit scanning room. I guess it was at that moment, with their existence confirmed, that I started to wonder what sort of people our children would grow up to be.
As a sports nut, I wished for a son, someone to play football with in the park and cricket on the beach. Despite an absence of any talent, I absolutely adore sport and am known as an obsessive. No longer would I get a little feeling of resentment towards other Dads playing in the park with their kids. Finally that was going to be me!
On 27 August 2003 our twins, Thomas and Alice, arrived. They were delivered at just 24 weeks old, however, and weighed just a pound and a half each. We were told they had a 20% chance of surviving.
Over the coming months, they faced a daily battle to stay alive as everything imaginable was thrown at them: brain operations, heart surgery, hospital superbugs, collapsed lungs ... they had to deal with it all.
On day three, we nearly lost our son. He suffered a massive pulmonary haemorrhage and, as his tiny body lay grey and lifeless in an incubator, the doctor told us very matter-of-factly: "Thomas is going to die in the next 20 minutes. Would you like to have him baptised?"
On autopilot, we nodded blankly.
"Once you've baptised him, we'll disconnect the life support, you can take him to the Quiet Room, hold him and say your goodbyes," the doctor said.
Thomas was just three days old, we couldn't believe we were going to lose him so soon.
As the short baptism service was concluded, a miracle happened - our little boy struggled back to life. Where medicine had failed, the sign of a cross on his forehead had apparently won his life back.
Struggling to believe what was happening, I leaned in to speak to Thomas through the tiny port hole of his incubator. "Thank you for fighting back, my son. I promise that if you make it, I will not rest until I know that you have the best possible life.... We are going to have such good times together."
And survive he did. His sister too. After nine months in intensive- and special-care, the twins came home.
Their early arrival and difficult first few months had paid their toll, however. Within two years the extent of their disability became apparent. It was a bitter pill to swallow after the lows of IVF, the highs of finally conceiving, the trauma of their spell in hospital and then the victory of their survival.
The paediatrician told us: "These children are unlikely to ever walk. Speech is likely to be unachievable. They are going to need permanent care for the rest of their lives. You will always have to feed them, change them and attend to them at night. They have severe dystonic, quadriplegic Cerebral Palsy."
I didn't even know what most of those words meant.
A bomb had gone off in our lives and the juddering knock to our dreams was painful and extreme. For me it was that loss of sporting ambitions that was tough to concede. My potential team mate Thomas and I would never compete together.
In many ways these feelings of loss were doubled because Alice was in the same position as her brother. She and I have a wonderful loving relationship but as this blog is about 'boy stuff' for other dads who might be reading, I've focused mostly on Thomas.
And so one day I found myself back in the park again, jealously watching fathers kicking a ball with their sons. I looked at Thomas in his wheelchair, his legs rendered useless by his disability, never to run and compete with friends.
Then I remembered clearly the night he pulled through, and the promises I made and I realise: Why shouldn't we do these sports together? We just need to find a way to do these things our own way.
Since the experience of that third night after Thomas's birth, he has been something of a hero for me - someone I look to for inspiration in difficult times. Thomas made a conscious decision to survive that night, spurred on, I have to believe, by my whispered promises to him.
Which is how on a blistering hot June day three years ago, with my son now aged six, we find ourselves lining up with 1,000 other runners in our local 10k race in Thame, Oxfordshire. Thomas is in his wheelchair, and I'm in my sneakers. What an experience! And what amazing support as we run the course!
As we turn the corner into the final straight the cheers go up for us and I raise Thomas' arm as we cross the line. His face beams with delight at the rapturous applause ... and I'm grateful for the sweat of exertion which is concealing the tears of joy running down my face as my sporting dreams are finally fulfilled.
Afterwards I ponder how far we've come. It's not the way I'd imagined it during those short months that I'd watched Georgie's belly expanding.
It is a different outcome to my dream. But different is what it is. Not worse. Just different.
Parents of disabled children sometimes have to adjust their expectations and create bonds and fun in alternative and inclusive ways. How have you achieved this? And how do you make sure your disabled child doesn't get left out of family activities? Tell us your story in the comments below.