When it’s out of your hands

I had everything ready, the cot built and the baby clothes washed, but I couldn’t control when my child would be born. In my case, that lay in the hands of surgeons on the maternity ward who could slot me in for a c-section to ensure both my child and myself were kept safe.

His birthday was out of my hands.

Once home we settled into a routine of feeds, naps, changes and more feeds again. As days turned to weeks I sang with my son, read to him, played with him, talked to him and treasured every day. It wasn’t long though before I started to notice that he wasn’t rolling or crawling or babbling.

His milestones were out of my hands.

I invested everything into him. I took him to baby groups, bought the toys needed for his development. I read up on everything despite very little sleep and I prayed he’d catch up.

My patience was tested as I waited for him to sit up, crawl, clap his hands, start solids and say that magical first word. At two and a half I enrolled him in nursery convinced this would help him, but the reality of seeing others his age playing in a toy kitchen, drawing, playing on trikes and singing songs at circle time hit me hard. It was then I knew my son was different.

Within a matter of weeks I was called to a meeting. They felt they couldn’t meet my son’s needs and he required a more special nursery placement. I asked if I had a choice in where he went but they shook their heads sadly.

His nursery school was now out of my hands too.

And so it continued as I entered this new unknown lonely road. By three we had our first diagnosis, followed six months later by another one. That list got longer every year he grew older. All too soon it was time to think about starting school despite the fact he still couldn’t talk, he’d barely learnt to walk and he was still wearing nappies.

By now I was becoming more knowledgeable, more proactive, and I searched for and visited all the schools locally that I felt might meet his needs. I attended meetings, I filled in forms and I expressed my preference. But in the end a panel of strangers looked at my child’s details and decided on a school more than 14 miles from home.

His primary school was apparently out of my hands too.

Each day I prayed for a miracle whilst slowly accepting the reality we lived. I celebrated every milestone, no matter how small, and cried at every setback. Despite the distance and difficulties I tried to be as involved with his education as I could. Then he suddenly started having seizures, losing his appetite, sleeping more than normal. A routine MRI under general anaesthetic threw us another curve ball. At just ten years old he needed invasive brain surgery for a massive tumour.

His health was suddenly out of my hands too!

It took time but he recovered and the news it was benign was a huge relief. He left primary and once again his high school was allocated by strangers who had never even met him. Now he’s a teenager, still not speaking, still incontinent, still fully dependent on me to meet all his needs. I dress him, I bath him, I even need to shave him now! With just one more year until school finishes everyone is talking about his life after school. The transition to adulthood is already starting even if he has no idea what’s going on.

While I will always be there for him to do everything there’s still so much as always that is out of my control.

His future, in many ways, is out of my hands.

But the hardest part of all is that it’s out of his hands too because whatever options he faces it all boils down to who is willing to pay.