Tuesday, 23 July 2013

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?

Friday, 12 July 2013

Make A Wish.....cos dreams really do come true.

So much has happened to us this year that I am struggling to put it all into words.

Jack being in hospital was so stressful and emotionally draining that I didn't really think I had any energy for anything more. In the last two years he has scared the living daylights out of me. This time was more intense and much scarier. This time, I really thought I had lost him.

Getting him home was my only goal and once there, keeping him well. I had something amazing to look forward to but I had shoved it to the back of my mind cos I didn't dare believe it would happen.

In hospital, Holly kept telling him "it's ok if you aren't well enough to go to Euro Disney, we will be quite happy to chill at home" and she meant it, though both of us crossed our fingers, toes, legs...you get the picture.

The first week home was a nightmare as he was still not great but after that we didn't look back. He didn't bounce back like before which was worrying but not surprising. This time I had to take baby steps and not rush him.

I kept him at home for the first two weeks before tentatively trying him back at school part time. It went well and even though he was quite tired after, my gorgeous boy was getting happier and brighter by the day.

My boy was back and I felt like my heart was gonna burst. He really is such a wee warrior.

It was then and only then that I began to get excited about going to Disneyland Paris. This was no ordinary holiday though, as this was Jack's wish being granted by Make A Wish, UK.

The week before we were due to go, Jack's wish granter, Vicky, was on the phone finalising everything and then we had to wait for the Wish pack to arrive. When it did, I was completely blown away! They had thought of everything...from a crelling harness for the plane, paying for my parking at the airport, letters for the cabin crew, right down to spending money for Jack. I was blubbering within minutes of reading it all!

That's when the countdown began. Numerous texts back and forth to my friend Kathy, telling her how many sleeps we had left til we were off on our adventure! I was full of childlike glee. We had paid for Kathy to come with us, as we knew that in order to enjoy the time with Jack, Holly and I were going to need some help.

The morning of the trip, I honestly couldn't tell you who was more excited!! Poor Jack was dragged outta bed at stupid o'clock so that we could be on the road for 8am, which didn't happen but hey the intention was there!

Jack and I on the plane. He already has his eye on the guy's seat in front of him.

The flight was uneventful but Jack's wheelchair got damaged by the baggage handlers. Once we got him back into his wheelchair one of them just handed me the foot rest like it was a spare part we didn't need! When I said "no way, you broke it, so you fix it!" he then got a hold of another guy who stuck his screw driver into the side of the wheelchair and shrugged his head. Meanwhile I am frantically rummaging in Jack's bag for the allen key which is usually kept there but then I had a flashback of me removing it just in case I was stopped at customs with it. Aaaah!

Next thing we were being whisked off to an Air France desk where the drama continued. They had the ingenious idea of giving us the borrow of a new wheelchair which they planned to deliver to our hotel, later that day. When I asked would the new wheelchair have all the harnesses and straps on it that Jack's had they said yes but with a look on their face that said no! Turned out "no" was the correct answer. Meanwhile our transport to take us to Disney was waiting patiently so our escort went out to them, to let them know what was happening before he took Kathy and Holly out with all the bags.

Once they had gone, I demanded that they just tape the damn thing on, give me more tape just in case and let me go on my way. My Disney clock was ticking and I was getting pissed off cos we were missing valuable time. Jack, who was obviously bored by all the drama, slept through it all!

Once we got to the hotel, I started to relax a bit. We quickly got Jack changed and headed out for some fun.

Much later, with the bags unpacked, Jack medicated and asleep, I was rummaging in Jack's wheelchair bag again and hey presto...I pulled out the elusive allen key. I let out a yell of triumph, looked up to see Kathy and Holly staring at me in amazement before they both fell over laughing, spluttering that "if you had found it at the airport then we wouldn't have had so much drama!" I just stuck my tongue out at them! Smart arses!

Jack's first view of our room.
The rest of the holiday was like that. Holly and Kathy had to look after all the money, tickets etc as I had so much stuff to remember to do with Jack that I became incapable of doing anything else, much to the amusement of those two. It's fair to say that I wasn't safe to be in charge!

Jack and I having a wee cuddle.
We had so much fun that at one point I nearly peed myself laughing! When I said that out loud, Jack started giggling. That boy is more switched on than we know!

Wearing his new Buzz Lightyear Hoodie.

Toy story fun.

Waiting for the parade to start.

Cuddling up to Simba.

I bought a new camera at the airport but it never made it out of the box cos I guarantee I would have lost it. I was so scatter brained! I am sure I left the house with my brain intact but you wouldn't have known it.  Keeping tabs on my mobile was stressful enough! Thankfully Holly and Kathy managed to capture the smiles and giggles.

Jack was a completely different boy when we were there. He was taking everything in, was animated, smiley, happy and full of giggles. It was a beautiful sight after all he had been through. It brought tears to my eyes.

Loving all the bright lights.

On the Tram Tours ride,

Even the rain didn't stop him from smiling.

With the Chipmunks at a character lunch.

I got chatted up by a French man called Larry! lol He asked me if I only had two children and when I said yes he said "no I think you are going to have 4 kids, there are two still in your stomach so when are we making them??!!!"  I hadn't really heard him but I knew by Holly's reaction that she wasn't impressed! Kathy and I just fell about laughing when she explained what he had said to me while Holly ranted on about there being "no more babies, where are you going to put them, there's no room cos I still technically live at home!" The more she ranted the more we laughed.

On our last night it was Kathy's turn to get admired. This time there were no words spoken just the guy looking her up and down, undressing her with his eyes, mouth hanging open complete with primal animal sounds. We laughed so hard I thought I wasn't going to get breath! Think it made her night.

It was only a short holiday but boy did we pack it in. Make A Wish paid for us to see Buffalo Bill's Wild Wild West Show and have lunch with the Disney characters which was such a laugh. All the characters were so gentle with Jack who was lapping up all the attention, smiling and giggling.

At Disney  Studios

Goofing around.

More silliness.

Jack with his fellow super heroes.

Laughing at his mum.

It's Mickey time.

Jack has his eye on those whiskers.

Captain Jack.

Kathy modelling her Tigger hoodie.

Check these two out.


Windswept and interesting.

Cutie pie.

One of the musketeers!

We were only away for 4 days but as it was quite physically and emotionally demanding, it was more than enough time away.

On the way back to the airport, our driver went out of his way to be so helpful. He was such a star. Once again Air France let us down. Our special assistance to get on the plane didn't arrive even though it had been booked and discussed at the check in desk. The ladies at the boarding desk were less than helpful and by the time someone came to help, the entire plane was already boarded and we were last on. As you can imagine, it was a bit stressful, especially since there was no one there to help us.

Holly and our lovely driver.
Once we were on the plane though, we had a good laugh about it cos really what else is there to do? No way was it going to ruin what had been a great time all round.

I have flown with Air France before and the exact same thing happened so I should have expected it.

We didn't arrive home until 10.30pm and it took three of us to get Jack ready for bed and draw up his meds. I think I finally fell into bed at midnight.

It was a few days before I came down off of my high. Thank you Make A Wish for a memory which we will cherish forever.

Total Pageviews


Related Posts Plugin for WordPress, Blogger...