Just an ordinary girl

Of all the things I have done with my life, being Holly and Jack's mum is my greatest achievement.

I was told at the age of 24 after having Chemo and Radiotherapy for Non Hodgkins Lymphoma that it was unlikely I would conceive. I remember thinking at the time....uh huh...whatever....but believe me, I can't think that far into the future cos at the moment I don't have one!

Two years after having the all clear, I broached the subject of babies again saying I wanted to at least try. The consultant had a wee chuckle before he said "I would prefer you to wait another year but two years is acceptable. It is highly unlikely that you will conceive straight away or even at all as your treatment was very aggressive". I stared at him and thought.........mmmmmm.......watch this space.

Two months later, the toilet and I were on first name terms. I was over the moon! The doctors were shocked. Nine months on, having been sick morning, noon and night I was a pale, sickly mess who was beginning to wonder if it was all worth it.

Holly was born at 6.57 on a Friday morning in April. She was born without a blemish on her, skin peachy and eyes wide and staring. Father of the Year wanted to call her Kirsty, Kerry or Heather but I wasn't convinced. I suggested Holly and he wasn't impressed. I wanted that name cos I had found it in an
alternative baby names book which gave different meanings to names than the norm. Holly meant "the gift of life".  Under the circumstances, it was the perfect name for her.

She looked like an angel but seriously she was the devil's child! She had her first tantrum at 6 months old in her bouncy chair and was in such a rage that she ended up on her hands and knees with the bouncy chair strapped to her back. It was so funny! By the time she was one, she was talking in sentences, had a photographic memory and was already quite the wee performer. She had a major aversion to being potty trained and had separation issues at night with bed times being a nightmare culminating in a fall that had us in a state, rushing to A & E. Still it didn't stop her from screaming and performing every bedtime.

When Jack was born, she totally adored him. He was a quiet baby, didn't smile til he was 8 months and didn't walk til he was two. By then it was clear that Jack's life wasn't going to be smooth but who knew just what a rocky road it was going to be.

Having a husband who worked away and when he was home, felt he should be on holiday, was tough. He rarely helped with the kids and I found that I was being bogged down with it all. After a particularly hard day of chasing Jack around trying to keep him safe, seeing to his needs whilst constantly saying "in a minute!" to Holly every time she asked me to do something with her, I cracked.

I was immersed in the hell of constant physio, occupational and speech therapy as well as running around after a child who had no sense of danger, who thought nothing of eating the dog's food (I jest you not!), drinking out of the toilet, climbing, escaping out of the back door running around in the freezing rain in just a nappy. A child who never seemed to be anything but hungry and thirsty, a child who rarely slept, who for two years was in constant pain. Add to that the endless appointments and arguing with doctors who didn't believe half of what I told them.

That night, I had a damn good cry when the kids were in bed. Then I got out a pen and paper and wrote down all the things that stressed me out the most. Not having time to do any housework was high on the list so after a chat with my mum, I hired someone to help out a couple of times a week. I got a lot of teasing for having hired help but it was a god send. The biggest thing though was not being able to give Holly the time she needed and deserved. I decided right then and there that I would make sure that any respite I got from Jack would be Holly's time.  It wasn't much at first as I got little respite but when my mum and dad started taking Jack on a Saturday then we would take off on an adventure.

Sometimes it was hard to get the energy up but I had made a promise and I couldn't break it! There were times that having that day with her was the only thing that got me through the exhaustion.We had so much fun together. One day a stranger asked us what we were laughing at and we couldn't honestly tell him!

This fun times helped us both cope with Jack's condition and his brain surgery, divorce, deaths in the family, endless hospital stays and a million other traumatic things that happen when you are growing up. I tried to be as honest about it all as I could but I made mistakes along the way.

Unfortunately there is no instruction manual for this. If I screwed up, I would admit it and just hope that my kids knew that it was all done in the name of love.

Being a single parent was definitely not a life choice of mine. I came from a broken family so I didn't want that for my children but I didn't truly understand just how alone I would be in bringing them up.

Having Holly and especially Jack, has changed me. Yes I am still the champion of underdogs, hater of bullies, detest unfairness and still willing to challenge anyone who treats my friends and family badly. In the past though, I would need to get really mad before I would stand up and be counted. Now I channel that anger and put it to good use fighting for what Jack needs.

Father of the Year often used to tell me I was stupid. I believed him for most of the 14 years I was married to him but then there came Jack with all his problems. I had a thirst for knowledge, like no other, to try to find answers. The internet became my best friend and I learned so much.

My confidence grew and I learnt to do my homework to be able to argue with doctors, look for a diagnosis that wasn't far off the mark every time. I listened to my gut instinct and it has served me well.I have campaigned along with a friend to get back services for our kids that were going to be cut and we won. Jack, Holly and I have graced the front page of our local newspaper many times highlighting disability issues as well as a national paper, been on local and national radio and for my sins, even TV which I couldn't watch, so mortified was I.

I have learnt not to sweat the small stuff and to pick my fights carefully. I take my anger, frustration and helplessness at the unfairness of the system and channel it into trying to make changes at school, respite, hospital and any other organisation involved in Jack's life. I don't claim to be an expert on legislation but I am an expert on Jack and all that he needs. I believe that there is no point moaning about it, if you are not willing to stick your neck out and do something to change it.I also try and give advice to people I know who are starting out on a similar journey. I help them trawl through all the bullshit, am a listening ear and someone to rant at.

I have stayed up til the wee small hours helping Holly with homework, projects, helping her revise, held her whilst she has cried because someone has hurt or bullied her, championed her through every little achievement, been the loudest parent at Prize Giving (I am not exaggerating!), sorted out problems at school, the list goes on.

Single parents get a bad name but seriously we are doing the emotional and physical work of two!

Without both of my children, I would be living a fairly ordinary existence. Throughout the highs and lows, I have rarely asked "why me?" Because why not me.. What doesn't kill you makes you stronger, right?

I have been told many times since Jack was born that "special children have special parents". I absolutely detest that sentence! I am not special just ordinary living an extraordinary life, not of my choosing. Or the other one "you only get what you can handle".  How can anyone possibly know how much trauma one person can take?

Someone once told me that "I had no life!" My reply was "If that was the case, then I would be dead. Just because my life is nothing like yours doesn't make it meaningless". I was so hurt and angry.

Some well meaning people have said "oh you wouldn't change Jack for the world now would you?" My answer would have to be "Yes I bloody would! I would make him well".

I would trade this extra ordinary life just for that but there are some things that I just can't change, no matter how much I stamp my feet, scream and shout at the world!

So I have finally come to understand the meaning of the poem my mum gave me when Jack was first diagnosed:                            

                                                  God grant me the serenity 
                          To accept the things I cannot change; 
                           Courage to change the things I can; 
                            And wisdom to know the difference.

Emm I am not sure yet about the wisdom bit but I am working on it!!!

So what is your greatest achievement?