I started this blog to put down my innermost thoughts and feelings about the direction my private respite time has taken me in.
New people have decided to follow me based on the recent set of blogs I wrote about events from my son’s life and the medical profession’s involvement in it. I thank you for that. I don’t know if you know what you signed up for, but please do check out my other blogs so you know, at some point I will be stepping back into my diary and those blogs will resume. That is my story to tell for me. I say this quite a lot on here. I am me, don’t judge me by what you read or would want for yourself. My choices are my own and I am happy with them and the events that take place because of them. I am finally living by my own rules and handling my issues my own way.
All that said, I know I have another story to tell, one that I have struggled to keep quiet for 29 years. One that hurts me to think about, but if it helps someone else in the telling of it then it is worth the pain of revisiting the trauma.
If you know someone who has a child with spinabifida and hydrocephalus, then ask mum if she’s doing okay too? No one ever asks me you know. No one ever says to me, hey are you coping okay? How do you feel today? Do you need a break? Can I do something, anything for you?
I learned how to be the best in the entire Universe at coping. And hiding it when I wasn’t. I can spin plates, all of them in a row all at the same time, they wobble alarmingly sometimes, but mainly I’ve got that shit down these days!
I’m abrasive to gentle ears, I am brash and bold, and demanding and forthright, I am loud and blunt and downright rude but I get my boy what he needs and if people’s sensibilities get a bit bruised or battered along the way, give in more gracefully next time! I tried asking nicely, you ignored me.
Now, I don’t get ignored. I go to the front of the queue because you know if I’m hanging around too long, shit will get real.
In my previous blog I went right back to the beginning, the day my boy arrived in the world and brought all the colours of the rainbow into mine. He brought with him some demons and dragons that needed slaying along the way, but we’re on it! It’s a work in progress, there are still a few out there. I know where they are, they can’t hide. I have a big sword and a shield that covers us both.
All in good time.
So, after the harrowing start my boy had in life I finally took him home with me when he was 6 weeks old. Our lives became a whirlwind of hospital appointments, doctors for this, surgeons for that, orthopaedic docs, paediatricians, physiotherapists, neurologists, Urologists. Clipboard mania ensued. Fill in this form, document that, measure this end of him, now measure that.
Whats going on with his feet doc? You need the orthopod for that, I only look after his head and his insides, the outside bits are for the orthopod to fix but its too soon for that.
The paediatrician was a lovely man, very quietly spoken but very good at explaining and he guided me through the first 9 months of my boy’s life. When you find yourself in the presence of a good doctor the feeling of relief is immense. You instinctively know you can trust them with your child. I made sure he knew, I only made one, I can’t make anymore, please don’t break him he’s my precious perfectly imperfect boy.
He got it, he nodded, he understood and for a little while there, things were good. Then 9 months happened and the hydrocephalus hit with a bang. One day he was fine the next morning his head had swelled to twice the size and we were suddenly in an ambulance being blue lighted 50 miles back to the children’s hospital and surgery number 2.
I have never been so terrified in my entire life to that point. I have passed it and topped it over the intervening years from then to now, but at that point I was still very raw and new to it all and terror had become my constant shadow dancer.
Regardless, we got through it, as I said previously, even his new surgeon agreed that if it ain’t broke don’t fix till it is. I loved that man for that. He took away my fear that I had done this to my boy. I had refused to acknowledge that he would develop hydrocephalus and now look where we were. He was of the 99 now not 1 out of 100.
In the event, the doc said I had made the right call back then and then again now. Nothing to worry about, no guilt to carry, no demons to slay later. But the husband thought differently and so it began. The bitching, the nagging, the questioning, the second guessing, the washing one’s hands of the whole affair, it’s her fault, she gave birth to him, it’s not from my side of the family, the fault is from hers.
MY SON IS NOT FAULTY! He’s perfectly imperfect.
I heard the words, they dug deep, they left their scars and the wounds festered. I was being controlled and coerced and defamed and I did nothing, but that is a different story and not to be told here. I put my head down and I raised my perfectly imperfect boy. My way.
By the time he turned 5 he had undergone 6 surgeries, 1 on his back at birth, 1 on his head to fit the shunt at 9 months old, 1 on his groin to remove a hernia the day before his first birthday, 1 on his feet to straighten them both, 1 on his left leg to stretch the hamstring so his leg would go straight, then the following year 1 on his right leg to stretch the hamstring so his leg would go straight. I was exhausted. No matter, he was doing fine so it was all good.
By this time I was beginning to turn away from the world and it’s wife and I concentrated solely on giving the boy the best chance I could at everything. He would dance if he wanted to, he couldn’t walk, hell, he couldn’t stand up without boots and calipers, crutches, a K walker, (a backwards zimmer frame). He had the smallest wheelchair in the world! He didn’t like going in it though, he said it made him look poorly and he wasn’t poorly, he was just different.
He started at primary school when he was 5. He went to an integrated mainstream school, nothing wrong with his brain, just his legs that didn’t work at this point. Jeez he was a live wire! He won the sack race on his first sports day, I tied the sack around his waist and put braces on to make sure it didn’t fall down, and he raced the able-bodied kids, him on his crutches belting down the track, that boy FLEW!
He beat them all fair and square and every single parent there that day cheered and whooped and hollered and I shouted THAT’S MY BOY!!
The headmaster had a lump in his throat and a tear in his eye when he handed my boy his trophy. It was to be the first trophy of many.
So you see, as hard as it was, and as hard and heart breaking as it has been and still is, there are golden moments of pure joy that make me fill up with love and pride for my perfectly imperfect boy.
All images are courtesy of the internet.