Twelve

A good friend of mine told me that she was pregnant today, and of course I am so pleased for her. She phoned from overseas to wish my son a happy birthday. So strange that although we are of a similar age, she is only beginning the journey of parenthood, and I am twelve years further on down the line. Oh, how much has happened to us in these last twelve years. I'm still having a crisis that my boy has bigger feet than me..

So, twelve years ago, he arrived into this world, not angry at being wrenched prematurely from his safe womb, but blue and silent. Instead of the tears of joy I so much anticipated, I found myself grimly looking at the new father as the baby was whisked in a panic to the other side of the room, umbilical cord not yet cut.

"Do you need a paed!" one midwife asked repeatedly and eventually the answer was 'yes'. The doors swung open and shut and a green-gowned woman, the paediatrician presumably, burst in, and some fumbling later my son took his first breath.

"Oh he had us worried then!" the midwife joked, as I held my newborn son, failing to get him to feed. His blood sugar was low, and he would not breastfeed, and so off to SCBU he went, but it was, I was told, nothing to be worried about. To this day I have not established whether his problems that revealed themselves later were already in place, and hence the poor birth, or if the poor birth was the cause of the problems. Knowing would not change anything.

We went home, and I looked after my son. I constantly pointed out the failure to meet milestones, but could get no interest. He sat, sort of, at nine months old, and that seemed to satisfy.

After we had passed our second new years eve, predicting yet again this would be the year he would walk, I became yet more aware of his difficulties. We moved closer to my parents, seeking support, and the change of area brought a change of health visitor, who was far from satisfied. And so we fell into the system.

"Muscular dystrophy" the paediatrician decided. I stood in WH Smiths and read an encyclopaedia, to find out what this meant, and cried. Weeks later the tests came back normal. Further tests were ordered. Normal. Head X-ray to check for bone damage in the skull, normal. More blood tests, normal, MRI scan, to rule out tumour, normal. This was our life. Tests that came back normal. Son, if you are reading this some time in the future, I'm sorry. They always convinced me it was worth doing, and each time it was not. And with perfect hindsight I could live to regret my choice. I was just making the best decision I could at the time. Each time.

The best part of 'the system' was the little red boots. We saw an orthotist, and he gave him some piedros, orthopaedic boots. Within three days my son took his first independent steps, at two years eight months. Everything else was ready for him to start walking, just his ankles were too weak.

I refused the biopsy. For years I was harassed for saying no. They eventually agreed with me. It would change nothing; maybe only give us a name, but no treatment. The results would always be more worthwhile when he was older anyway. I refused all the tests that would give no gain.

When he was four, the focus of my fighting the system took a new direction. Education. He would need support, and to get support he would need a statement of special educational needs. The fight was ugly; I had to call under false names to get put through. In the end I am sure he got his statement simply to make me go away. My marriage failed at that point too, in all that anxiety and stress. I fought on at the system alone.

At that time I found the internet, and stumbled across a website called 'Benign Congenital Hypotonia'. There was a picture of a boy sitting in the w-position. The forbidden position that we were always correcting! I made friends there, of people making the same journey as me. Many I have known for these past eight years, been there through so many trials and tribulations, heard of their children growing up, and still not met them. Yet. The support is and always will be invaluable. It is always the parents in the same position who told me things I really needed to know.

So he started school, and had a helper. It was hugely successful. Educationally he was doing just fine, his speech and mobility holding him up. Over the years the learning difficulties became more the problem; the physical is less relevant. He enjoyed his time at primary school, and I shall always look back in fondness at many moments - him being a king in the school play, being cheered on at sports day. Each year I would lock horns with the local education authority to keep the support. We would make the rounds of the therapists, and paediatrician and neurologist, gathering damning judgemental reports to use as weapons. Each year we changed a little. For my son the success of the early years has drifted, just like the friends he made in those times, now he does not really relate to the other kids. And for me, I lose a bit more cope, a bit more fight each battle.

Now, it's time to look at the next school, secondary school. With much angst, we approached the special schools, but the ones for his level of ability have all been closed. I fixed my mind on the secondary school. It would work. It would be made to work.

I had my epiphany when driving back from the school run one morning. I had to stop for the lollypop man at the secondary school. Over the big red bridge a surge of children moved, all in backpacks moving to their next class. And I realised, that was what I wanted. I wanted him to be one of them. As the special ed kids crossed the road in front of me, not taking the bridge, I took a reality check. I wanted normal. I wanted to 'normalise' my son. And it was not going to happen. I began to wonder what I actually wanted for my boy, and what of those dreams were actually likely. Happiness. Yes, he is happy - did I want to ruin it? No. and life skills. The ability to get on in life, manage his money, cook his dinner, enjoy life. And this I can do by educating at home.

Over the years, many of my Internet friends would write a life story, or update last year's to celebrate their child's birthday. I never have. But here we are at a turning point, and so perhaps its time. Since he was two, I have tried to protect my child from 'the system' from unnecessary tests and procedures, not allowed him to be abandoned within the school system, and I really feel I am done fighting. I am not giving up; I am taking back control, after ten years. I hope I am not so very late. Now we will concentrate on him being happy, and giving him the foundation and the skills he will need to cope in adult life.