I once mentioned that I had wanted to share a positive story that might offer hope to others, yet I couldn't because I did not have a scanner. I was also keen to post one particular photo that meant a great deal to me.
Then I received the funds to get that scanner, and Sian at Mummy Tips's Memory Monday Meme got me reminiscing and gave me the push I needed to share part of our story.
It's a story with the happy ending no-one expected and proof that there is always hope. Life never remains bleak forever; things do get better.
To anyone else, this is just a photo of a two year old girl walking. It was taken in August 2005 and we are on holiday in Devon.
In reality this is the photo I never expected to take; this little girl was never expected to walk. This is my daughter IJ and these are her tentative first steps. What is not obvious is that years of physiotherapy were required to help her reach this huge milestone, but she did it. We did it.
IJ arrived in the world curled up in a tiny ball. Despite spending her first two weeks of life in the Special Care Baby Unit after a difficult start, there were no indicators, when I was finally able t0 take her home, of the struggles that would lie ahead for the two of us.
Everything about her seemed perfect. Yet by the time she had reached four months old it was obvious that all was not well. She had always struggled to feed and had started screaming in pain every evening for no apparent reason. I sensed it was more than just colic. Her little body had begun to uncurl itself but her movement still seemed quite limited. Something was not right.
These concerns eventually resulted in a week long hospital admission where IJ was poked, prodded, x-rayed and scanned while I stayed on a camp bed at her side out of my mind with worry.
Then came the devastating news that her feeding problems were symptoms of a far more serious issue. Her muscle tone was weak, her spine was curved, she had little head control and one side of her body was clearly more seriously affected than the other.
The prognosis was grim. She would fulfil her expectations but no-one knew what those expectations would be. It was highly unlikely that she would ever walk or talk. With that news to digest, I then took my baby home, utterly devastated.
I would like to say I then read every medical book relating to IJ's problems, that I went in search of every possible source of help,and sought advice from every professional I knew and weighed up all our available options, but I didn't, not immediately.
I crumbled, I fell apart, I didn't eat and I didn't sleep and I grieved for the perfect child I thought I'd lost, and I ended up as ill as IJ. I was angry with the world. I was a single parent trying to cope alone with a very sick child with a bleak prognosis and an uncertain future and the world seemed a cruel and uncaring place to be.
But then that little girl smiled and reminded me that she was still here, she was still my baby, and so our fight began.
I registered IJ with a Special Needs group run by our local hospital where she was given a team of specialists to oversee her care. I learnt Makaton sign language which proved invaluable in helping her communicate. And every day I did physio with her to help strengthen her weak muscles and straighten her curved spine.
There was never any guarantee that she would walk or talk. For a long time there was very little communication and her progress seemed limited. The medical staff could make no promises preferring to air on the side of caution and avoid offering any false hopes, understandably.
Despite the bleakness of our situation and my endless months of worry and often despair, we kept going, just the two of us and a team of professionals who were doing the best they could.
There was little choice but to face each day; no matter how tough life is, the world keeps turning. With a little girl who was slowly developing her own character, with her cheeky grin and happy disposition despite her challenges, getting off was not an option. I refused to give up on her; I could never do that.
And slowly but surely a few words came around 20 months and her movement improved. IJ never crawled but eventually she was able to pull herself up again the sofa and remain there for a few seconds at a time.
Finally aged two, she took her first shaky steps. It had been a long haul but we did it.
She has continued to go from strength to strength.
Now aged six, she is exactly the same as her peers. She took a little longer to reach her milestones but she got there in the end.
She's my little superhero.
It's a cliche but when life get's tough, keep going, an hour at a time, a day at a time, one step at a time.
That's what we did.
