Too tired to care

I am tired.

I am struggling.

I am overwhelmed.

I feel inadequate.

I am hiding.

I am struggling to get motivated.

I struggle to get out of bed.

I struggle to smile.

Little things stress me out.

I can be tearful at the drop of a hat.

I feel isolated.

All of the above statements are true at the moment.

Do you ever feel like everyone wants a piece of you and if you give them what they need you are going to shatter into a million tiny pieces?

I don't understand it. But I know what it is.

Loss.

No one has to have died for a person to experience loss.

I live with it daily. This roller coaster life that I live with my very precious and sweet child, who has more health issues than you could shake a stick at, is tough.

People have told me that I have a choice! A choice to what I ask? To care for him, they reply.

These are two types of people who say this: professionals and people who have not an ounce of empathy!

I do not care for him out of duty. What most people just don't get is how much I love and adore him. Jack has the right to life in a family environment in the care of people who love him surely?

It would be like me suggesting to a mother of a very healthy, naughty child that really, he would be better off in care....can you imagine the furor that would cause? Not to mention the offense she would take!

Jack, Holly and I have a bond that is so damn strong. I have no idea what the future holds for Jack but with 3 significant episodes of deterioration in his health over the past 4 years, I can only imagine what is next.

I am not selfless. I have not put my life on hold for him. I don't feel that he holds me back or stops me doing things.

Actually it's the other way around. I often feel that I don't give him enough opportunities and that our world has become so small. I am only one person so going places with him requires help as I can no longer lift him alone not to mention the emotional and physical toll it takes on me.

Planning a day out or a short trip away is a major operation. Jack's entourage would make a celebrity jealous!

Then there is the problem of changing him when we are out and about. Disabled toilets are a joke if you are unable to move your body yourself so the only alternative is to change him on a dirty floor in said toilets but now he is even too big for that!

Visiting friends is a no no cos most of them have steps up to their house and it costs a fortune to buy portable ramps. In fact anything specifically for the "disabled" gives companies carte blanche to charge 3 times as much for it!

This is not a pity party, far from it. I just need to get this out otherwise it is going to erupt out of me like a volcano!!!

I very rarely tell it like it is cos when I do, people say the most stupid things!!!

A friend of a friend, after hearing how ill Jack had been, said " you just don't have a life do you?" Resisting the urge to smack her one, I replied " if I didn't  have a life then I would be dead!"

Just because my life is so damn different to yours doesn't make it any less valuable!

I do what I do, I get by, I ride the storm. I am strong but I am expected to be stronger.

The respite unit Jack goes to were feeling overwhelmed by the level of care that he now requires. They wanted more support from the NHS to look after him. They dumped this on me as I went to pick him up the first time he was in respite after coming out of hospital.

What the hell? They got the reassurance they needed eventually but it meant 4 months of uncertainty for me.I don't think they realize that it has hurt our working relationship.

I never complain about the level of care Jack requires, I am just grateful that he has survived the latest trauma and he is still with me.

There are so many ordinary people like me in the this world. Fighting to keep upright in extraordinary circumstances where they are pushed to the limit.We don't want pity, just understanding, support, love,a tiny bit of empathy and for our voices to be heard.

We may be down, but we are definitely not out. Thanks for listening.

In my next life I am coming back as a very pampered pooch.

Hello there my little gigglers.

I am so sorry for my lack of blog posts. It's not that I haven't had anything to say, it's more that there is so much to say that I didn't quite know where to start!

This is probably gonna be a long post, so get yourself a cuppa, pull up a chair and read on.

I feel like I have been running, constantly trying to catch up since Jack came out of hospital. It's really hard to take home a child who is still quite ill and not have an answer as to why he was. In the past, we knew what was wrong, dealt with it medically in hospital and was usually sent home, thinking "thank goodness I/we don't have to go through that again!".

This time, the problem still existed. I came home with more meds than you can shake a stick at....over twenty, with about 18 of them everyday meds, and loads more "as required" meds to help should Jack become sore again and be unable to lie still.

I have had to use these meds, one in particular, quite a lot but in desperation, I have also turned to my faithful friend Google and looked up alternatives to use at home. My favorite, which in the end, I didn't need Google for seems to be peppermint tea! This stuff is saving my sanity at the moment. All hail peppermint tea!

The peppermint leaf

Who'd have thought it would work to relax his bladder but hey, I figured that, if it works on your stomach then hopefully it will have a knock on effect. So far so good.

Then barely weeks after we got out of hospital, there was our trip to Disney, which was amazing but also exhausting. We were only home a day before Holly and I were heading off to see Robbie Williams in concert. We had a ball but the night ended in a way I never expected.

The concert was great. After standing for a good 6 hours, we then had to walk for about another hour and a half to get a taxi. In the 15 mins it took to get across town to my car. Holly's joints had seized up. She had trouble getting out of the taxi and had to lean on me to go the short distance to where my car was parked. I had to help her in and physically move her legs into position before snapping the seat belt in.

She was so distressed and it got worse when we had to do the same again but in reverse to get into the hotel. By the time I got her undressed and into bed, it was 1.30 am but I couldn't sleep. I had known she was having more trouble with her joints than before (she started having trouble about age 14) but this was a huge shock. I will admit, I felt totally overwhelmed.

So this summer we had numerous appointments with the GP, who drove me nuts with her lack of concern. Finally I managed to persuade her to investigate more when I blurted out that her brother was disabled which seemed to light something in her eyes and she agreed to discuss Holly's case at a team meeting two days
hence.

True to her word, she called to say they wanted more blood tests. We went up that same day and had to wait a week for results. Meanwhile, much to my annoyance, she insisted that Holly self refer to see a physiotherapist before they would even think about sending her for a scan.

The blood results came back with a note saying two things were slightly raised in her blood but it had been marked No Further Action. I thought I was going to explode! So we asked for another appointment with the same GP only to be told she had left!!!

As luck would have it, we were given an appointment the same day we were due to see the physio.

That morning, she could hardly get out of bed, let alone walk. It hurt so much to watch her struggling. The physio was lovely but said there was little she could do without a diagnosis (which I knew...grrr!!!) She advised us to really push for a rheumatology appointment and was very kind to us, which made us both cry.

Later in the afternoon, we saw the GP. When he called out her name, Holly had a real job getting out of the chair, as she had seized up, in the 5 mins she had been sitting. She literally shuffled up the corridor towards him. It seemed to take so long to get to his room that automatically I put my arm out to let her lean on me.

We were in his room less than 5 mins. We didn't have to push for the rhematology referral as he could see by looking at her that she had a major problem. He said she most likely had arthritis, should be walking with a stick and not leaning on her mum!!! He advised us of stuff to take til then and we were out of the door.

At least nowadays you can get funky ones! To buy click here

We got back into the car and I just drove. I didn't know where I was going but we ended up in the country in some secluded spot where she fell apart in my arms. I could feel myself unraveling then too. I didn't know what to say or do cos nothing was going to help so I just held her and cried.

Then we drove to my dad's house, told him the news and he just held her. My dad looked as dazed as I did! It really felt like a very dark day. As we were leaving, my dad hugged me tight and with tears in his eyes said "my god girl, you were born fighting and you've been fighting ever since, I just hope you have the strength for this one". That's when I really broke. How I got home is beyond me cos I couldn't see for tears.

During all this, there was family drama too and not of the good kind. My lodger was causing all sorts of trouble for me with family members and I learned a lot of hard lessons this summer.

So lessons learned you ask?

Well.....I have learned that if a family member asks you to do something major for them but your gut is screaming NO, then trust your gut cos it will come back and bite you on the ass.

I have learned that I can't change the way people think about me and that really I no longer care either way.

I have learned that if someone is going to be two faced, no matter how hard they try, neither of these faces are pretty.

I have learned that someone who pushes their way into your life and invades every part of it are usually there to cause trouble.

I have learned that if someone twists your words and people who know you well. believe it, then it is not up to me to change their way of thinking. It's true what they say, you never stop learning...just some lessons are easier to stomach than others.

Picture from here

We had visitors too. My oldest friend from school and her family came to stay and what a week of madness it was! Her husband Ged helped me cut down half of the garden. I don't know who got the most satisfaction, him or me but I am not sure he enjoyed the trips to the recycling as much! Neither did I cos I did serious damage to my big toe!

Susie was a huge help with Jack which was awesome as it was nearing the end of the school holidays and exhaustion was kicking in. We had such a laugh together and the house felt empty when they went away.

We've had two trips to Rachel House, one just to chill and the other was for moving Holly back to Uni. I just love it there and you meet some great people who just "get" you.

On top of that we managed to pack in another visit to Cray House which really is a little slice of heaven for me. This time we invited my friend Kathy and her two kids plus Holly's other friend Georgia. We were only there a few days but everyone had such a laugh. I knew it was going to be good when the banter started five minutes after Diz got in the car. She is so cheeky!

Holly and I also got away by ourselves for a few days and we went up to Kyle of Lochalsh. We had such a laugh but that is definitely a post for another day.

It has been an eventful summer and I can hardly believe we are at the end of September! Already there is a chill in the air and the colours of autumn are arriving.

I just love this time of year, don't you?

The deadliest shower....ever!

It's nearly the end of summer and oh boy has it been busy for me!

I have loved having Holly home for 3 months especially since she has provided me with lots of reasons to smile and laugh.

Two weeks ago, she out did herself when she called me from upstairs. She had just come out of the shower and was alarmed to hear a buzzing noise coming from it after she had switched it off. She seemed to think that the shower was going to blow up or electrocute her!

I came upstairs to investigate and sure enough there was a buzzing noise coming from inside the shower. I was confused because it wasn't an electric shower so how it could be buzzing was beyond me. It runs off the gas central heating so instantly has hot water all the time.

I turned the shower on and off a few times while Holly hovered at the bathroom door, looking anxious.. I stood outside the shower door and listened. The buzzing was coming from near the temperature control button. I leaned in to listen closely and that's when I realised that the buzzing wasn't coming from there at all but from the basket that hangs in the corner of the shower.

I put my hand in and brought out the battery powered razor she uses and said to her "were you using this in the shower?" She looked at it, like it was some sort of alien object and looked at me confused. "emm, yes I was, why are you asking?" I had switched it off as I brought it out of the shower, so I promptly switched it back on and it started buzzing gently. I then dropped it back into the basket where it started buzzing very loudly. Holly's face was a picture!

"That's your dangerous buzzing, you numpty!" I said, bursting into hysterical laughter. I laughed so hard that I was clutching my stomach, unable to breathe. Meanwhile Holly is standing indignantly, in just a towel, not sure whether to laugh or cry at her imaginary brush with death.

I was still laughing an hour later but she just kept telling me to shut up which just made me worse. Who'd have thought having kids could be this much fun?

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?

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.

Cheeky!

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.

Exhausted.com

Hey from very sunny Scotland.

I have been awol for some time as Jack was back in hospital with unexplained pain. It seems to have come from his bladder and kidneys. Stones were queried but not proven.

The pain was fairly intense and it took a long time for them to get him to a point where he was comfortable.

It was a very scary time as he had three periods where he stopped breathing and was rushed to HDU. My stress levels were off the Richter scale!

This is the day he properly woke up in HDU after about a week of pain relief and sedation

We are home now and he is still a bit uncomfortable so I am now searching the web for some home remedies as he is ok when he is lying down but really uncomfortable sitting up.

Exhausted doesn't even cover how I feel but on the plus side I have my lovely daughter home for the summer and she is helping to keep me sane.

I hope all is well in your world my little gigglers. 

Escape to Cardiff

It's been a hectic few weeks for me in my little part of Scotland.

Jack has had two chest infections, had an emergency visit to A & E after falling out of his bed, had a urine infection and is now onto another one. As I type this post, I am waiting for him to pee so that I can send a sample away. He hasn't gone for over 8 hours!!! It is 11pm so it looks like it is going to be a long night.

Whilst all this has been going on, I managed to get away for a few days to Cardiff in Wales with Virginia whilst Jack was in respite.

Virginia's main reason for wanting to go there, was the castle, as it is steeped in history which she has a real passion for. I am ashamed to say she knows more about Scottish history than I do!

We managed to get really cheap flights to Bristol and from there we had an hours train journey to Cardiff. Our accommodation was about 7 mins walk from the train station, 5 mins walk from the city centre and we were right across the road from the Millennium stadium.

Pic from here

Our accommodation was nice but the walls were paper thin. On our first night we could have joined in with the conversation the two guys next door were having, it was so clear. I did resist the urge...honest!

We had great fun visiting the castle. I couldn't even begin to imagine what it would have been like to live there. The rooms were so beautiful and ornate it took your breath away. Who would have the patience to paint all those intricate details I ask you? I would have gotten bored and gone in search of chocolate long ago!

Me in the stocks at Cardiff Castle (pic taken by Virginia)

We spent the whole morning at the castle. The eeriest bit for me was walking through the secret tunnels within the outer wall of the castle. These were used in World War 2 as air raid shelters for the towns folk. As you walk through them, there is an old radio broadcast playing Dame Vera Lynn's song We'll Meet Again and real recordings of bombs being dropped. All through the tunnels there are signs about putting on your gas masks, benches for sitting on, bays with beds in them and a soup kitchen. I am so glad I didn't have to live through that.

After the castle, we did the city tour via the Hop on Hop off bus. Virginia had never been on one of these before which made me laugh cos as a tourist it is the first thing I would do. Holly and I make a point of going on these buses in every city we visit. It gives you a more in depth insight into the place you are visiting and your ticket is valid for 24 hours so you can hop on and off as much as you like.

Next we visited the National History Museum. We spent over two hours in there looking at wales in ancient times, fossils and dinosaurs. By the time we came to the art section I was getting restless.

Looking at some of the modern art, I was bemused to say the least. Some of it looked like it had been made by toddlers! I jokingly said to Virginia, that if this was modern art, then someone like me could easily create a masterpiece. All I had to do was pee, poop, bleed and vomit on a canvas, call it Life's A Bitch and I would win the frigging Turner Prize!!!! I laughed so hard at my own joke, I nearly peed myself!

The jokes didn't end there either. After wandering through paintings of landscapes, buildings and splashes of colour that didn't look like anything, we finally came to the historic art section which was full of portraits by 18th century welsh artists.

We had looked at quite a few, when I happened to mention that the men were a bit pale and feminine looking in those days, a bit puffy around the face and really not eye candy at all! We had quite a chat about this, so much so, that we actually sat down on a bench to discuss it further when after a pause I said "I bet they had tiny penises too!"

I thought Virginia was gonna die laughing as she spluttered "how did we go from them being feminine and pale to talking about the size of their penises!!!! Who makes that kind of leap in their thinking?"

Emmmmmmm....well that would be me!

She said this so loud that people's heads whipped round so fast, giving us such a look, it was comical. I was nearly crying with laughter and it got worse when I came across a painting a minute or two later in which the poor unfortunate man was so not bonnie! I grabbed Virginia and said "don't look at that one, he looks like he fell out of the ugly tree and hit every branch!!!"

The two of us were helpless with laughter and were getting quite a few looks so we thought, maybe it is time to leave. Who knew you could have so much fun in a museum?

We were only there for 3 days but we packed as much in as we could. We had afternoon tea at a lovely little cafe by the park with tiny sandwiches and scones, served with fruit tea and a slice of cake. Just heaven.

We wandered through the Historic Arcades, peeking in designer boutiques, cute little cupcake shops and lots of other unique little stores. We spent a morning wandering around Cardiff Bay, caught a glimpse of the BBC Wales studios where Casualty and Dr Who are filmed and wandered around a really gorgeous craft shop where we both could have spent a fortune on jewellery if only we had the money.

If you ever get the chance to visit, you should. The place is lovely but what makes it special are the people who are so friendly and welcoming.

But all good things must come to an end. Heading home was fairly uneventful until I lost my phone getting into the car at the airport. My dad drove off with me hanging out of the car trying to catch the door and it probably fell out then. I retraced my steps but alas, the phone had disappeared into the big blue yonder, taking with it all my contacts, photos and events in my calendar. I was extremely upset but what can you do apart from phone your insurance and get a new one!

I am barely home a week and Jack is unwell again hence the reason I am up so late. It is now 1.30am and Jack has finally given up that urine sample I was after and is again sleeping peacefully.

Now I just hope that the rest of the night continues that way. Hope all is well in your world my little gigglers.

Naturasil cured me of my witchy afflictions

Last year while Jack was in hospital, he developed a wart on the wrist of his left hand. It wasn't a problem at first but then it grew really big.

I tried one of the over the counter remedies which involved freezing it but as soon as I put it on, I could tell that it wasn't painless and he wasn't a happy boy. As it didn't work anyway, I sought advice from his Health Visitor and the advice given was to put duct tape on it for 7 days, remove it, file the wart down and repeat.

You can imagine my face when she told me this but I will try anything if it is going to work. The duct tape didn't even last hours, never mind days! That boy of mine was so sneaky at getting it off, all without pulling at it. I found duct tape stuck to everything, including the dogs but not to be outdone, I kept at it. After 3 days I gave up!

who would have known this would be a remedy?

I didn't really know where to go from there so I left it a while. Then one day, I noticed a spot on my face, not far from my lips. On closer inspection, after trying to squeeze the damn thing to get rid of it and only causing myself pain, I realised it was a wart! Aaaaaahhhhhhhhhhhhhhhh!

I was horrified! I knew straight away that Jackyboy had passed it on to me and I even knew how.  I am always putting his hand up to my face and kissing it so it was only a matter of time before he shared the love.

It looked huge to me and I was convinced that every body could see that I had turned into a warty old woman over night! Whilst visiting Holly at Uni, I pointed out my affliction and gave her my woes while she fell about laughing, saying it didn't look that bad. But it did!

That damn wart taunted me from the mirror, practically grew arms and waved at me every chance it got and I was convinced that people were staring at it when they talked to me.It seemed to grow bigger every time I looked at it. If I didn't know better I am sure it was laughing at me.

After an evening where I swear it doubled in size, fluffing up like bloody mushroom, I decided to take action. As it was on my face, I knew I couldn't burn or freeze it off so I had to find something more natural.

Surfing the net, I came across a product called Naturasil. It was a homeopathic treatment which claimed to get rid of all types of warts. It cost £24.99 for a tiny bottle that claimed to get rid of the nasty bugger that afflicted me without pain or scarring. I found that hard to believe but really people, I was desperate to be rid of my new unwanted friend so it was a small price to pay.

The box is a bit dog eared, a sign of a lot of use

The instruction said to apply it 3 times a day over a 3-6 week period. I tried to follow it to the letter but sometimes I would forget and only apply it once or twice. I saw no change in my "not so little" friend for the first few weeks but then suddenly out of the blue, it seemed to have shrunk and wasn't so hard, less warty. Excited I kept at it until one day.....it disappeared!

How can it be there one day and then just poof? Gone into thin air. I inspected my face all over for signs that it hadn't gone just merely migrated to new pastures but no, it really had gone. I literally screamed, punched the air and did a wee dance around the bathroom. So chuffed was I that I text Holly to tell her that my affliction had buggered off!!! Mmmm great text to get from your mum eh? She was like "emmm, ok, that's great".

I should have had the foresight to take a before and after pic but I am really not that organised.

So now that I knew that it didn't hurt to use and didn't cause scarring, I set to work on the main man, Jack's nasty little friend. He was a lot more resistant to the whiles of Naturasil and it has taken a lot longer to see a difference but his hard, lumpy, warty friend is almost gone but not without a last act of rebellion, the little b**tard! Now we have a smaller friend sprouting up next to the original one but I am on him, armed and dangerous with Naturasil. That sucker is going down!!!

So now Naturasil is my new best friend. This skeptic has been won over, well and truly.

Now this stuff works on skin tags and verrucae too apparently so now I am trawling my body looking for any. I feel a bit like Lady Macbeth....out damn spot! Out I say! (See, cultured too. I am a woman of many talents..not).

Now I can go out, safe in the knowledge that my little friend can no longer yell and wave at people as I pass by. I am not vain but you have no idea how happy that makes me.

Oh the trauma!

On the brink of Insanity!

Last year I had two very surreal moments when I feared for my sanity! The first one happened the first week of January, 2012. After two months of hell and suffering, I had finally managed to persuade a doctor to transfer Jack out of Aberdeen Sick Children's to Edinburgh Sick Children's Hospital.

We were due to be transferred on the Thursday morning so Wednesday was a day of tying up loose ends and packing up stuff.

One of the complaints I had made was re Jack's wheelchair. I had asked a nurse the very first week we had come into the hospital if she could ask someone from wheelchair services to come and have a look at Jack in his chair, as he was getting zero support due to the deterioration of his scoliosis. Every week that went by, I asked again and was fobbed off with many excuses so no one came to see us.

The day before our transfer, 8 weeks later, a nurse came over to tell us that she had phoned wheelchair services and the first available emergency appointment was in 6 weeks time!

It was the final straw for Granny Mac, who promptly burst into tears. As soon as she started to cry, I started laughing. I don't know who was more shocked, her or me! I laughed and laughed, til tears rolled down my face, my stomach ached and I thought I was going to be sick. I looked up in the middle of this hysteria to find the very bewildered faces of Granny Mac, the nurse and Val from Chas at Home looking at me like I had totally lost the plot!

The more Granny Mac cried, the harder I laughed. Through her tears she asked in a shocked voice "why are you laughing? Stop laughing, it's not funny!" This just made me howl with laughter all the more. I was totally creased up, bent double and was laughing so hard I literally couldn't breathe. Eventually I managed to splutter "you really need to stop crying cos the more you cry the more I laugh".

Even Jack thinks it's funny!

She looked incredulous at me as if I had gone mad! Then through her tears she went on a rant about how outrageous it was that an emergency appointment could take that long. This sent me into more bouts of hysterical laughter til I was a helpless, blubbering mess hanging onto the edge of Jack's bed.

I did manage in the middle to blurt out "if I had been given that appointment when we came in, I would have had it by now!" before dissolving into fits of giggles again.

I laughed like that for well over an hour and throughout the rest of the day, I would dissolve into fits of laughter for no reason whatsoever and at some of the most inappropriate times too.

Fast forward to June, when finally Jack has had his Fundoplication after two cancellations, been on continuous feed for 18 hours a day for 7 months, suffered a broken leg and severe oesophogitis, stopped breathing numerous times, suffered 100's of seizures, aspiration pneumonia twice and the countless other things that had happened in that 9 months. He was finally back to being fed into his stomach instead of  his jejunum and I had finally started to see the end of this nightmare.

After his fundoplication

After driving 4 hours to get home from the hospital I was shattered but happy to be home. Jack was still in plaster and his feeding peg was not yet a button but things were far far better.

Marion, Jack's carer was in looking after him so that Holly and I could have our tea. At 7pm we were getting him ready for bed. We had gotten most of his meds into him but when it came to putting in the last one, the peg was blocked! After trying to unblock it, I could feel the panic rising. We tried for over an hour to no avail; it was blocked solid.

I phoned Edinburgh for advice and the nurse told me to keep trying and call her back. I was shaking, crying and inconsolable. This was catastrophic because this was not a peg I could change myself and I had visions of having to get back into the car and drive the 4 hours back to Edinburgh. I kept saying to myself "no, no, no, no, no NO!" over and over. Poor Marion and Holly didn't know what to do with me so I asked Holly to call Granny Mac because in my mind, she was the only one who would understand what a disaster this truly was.

If it had been this type of peg, it wouldn't have been a problem cos I could have changed it myself!

We tried for another half hour after she arrived to unblock the damn peg! Everything we tried to flush down it, just exploded out of the other syringe portal. Marion, Jack and I were soaked. Granny Mac was trying to help but often just got in the way.  I felt like screaming! I lurched between crying hysterically and total silence! The only saving grace was that Jack slept through it all!

I called Edinburgh again and was told to take him to our local hospital. We had to hoist him back into his wheelchair and into the car. On the drive up, I was so distressed that I told Granny Mac exactly what I thought of her son, Father of the Year! I held nothing back. By the time we got up there, I couldn't breathe and was having chest pains. Poor Granny Mac was crying too as she just didn't know what to do with me

Marion met us up there and we went straight to the children's ward. We spent hours in the treatment room with numerous people trying to unblock that damn peg but it was not to be. The said we would probably have to go back to Edinburgh the next day and I told them "well you will have to take him, cos I am not going!". They tried numerous times to get a drip into him as well but his veins were crap which distressed me all the more. Bloody hell, had he not had enough? I cried most of that time with Marion getting permission to bring me cups of tea, which believe me, is NEVER allowed in the treatment room! Marion left at 11, three hours after her shift should have finished. It was her wedding anniversary too!

They managed to persuade me to sit in the parents room for a while but then they called me back because they needed to get a drip into Jack otherwise he would be dehydrated. Granny Mac was getting upset again so I knew that I was gonna have to pull up my big girl panties and just face it so back through I went. It was after midnight by then and I was rung out. I persuaded Granny Mac to call her husband and go home cos she looked as bad as me. Lynette stayed as she was going to be staying with Jack overnight. Just after 2 am we got Jack into a room on the ward. The drip was in but the peg was still blocked. I kissed him while he slept on, oblivious and went home.

I woke up the next day, feeling as if a huge weight was sitting on my chest. I ached everywhere. I rolled out of bed and saw that I had a text from Lynette saying that she wished she had good news to impart but that things were still the same.

I dragged myself up to hospital, resigned to the fact that I was probably having to drive back to Edinburgh.
Oh joy! But there was a glimmer of hope. A doctor was called and he said he probably could replace it, as it had been a week since it was put in so it should have healed and meshed now. I suggested he call the surgeon in Edinburgh to check just in case. He then spent the next hour trying to unblock the peg too, putting wire down it but the damn thing just wouldn't budge.

Granny Mac came to visit and the two of us sat with Jack.I apologised for losing it the night before and she said it was perfectly understandable!  Eventually at 1.30 pm the doctor appeared and changed the peg. When he took the blocked one out he showed us what was causing the blockage. There was a solid lump of white which turned out to be calcium, the supplement he was getting to help his broken leg heal! He had only been on it a week and a half but since it had been given with all his other meds, it had just slowly attached itself to everything until one day it became rock hard! Who'd have thought?

I was so relieved!

Ah happiness at last.....my old friend Red!

After I took Jack home, it took me weeks to recover from my melt down. I now know that it was the final straw after 9 months of hell and holding it together.

So please tell me I am not alone?

Would you work 100 plus hours a week for pennies?

I have always believed that laughter is the best medicine and I have been getting it by the bucket load since Holly Dolz came home for Christmas.

She is the person I get to be childish and totally daft with. Last Saturday we were out and about trawling the D.I.Y shops. We were fed up looking at paint and wallpaper so we had a drive around before going to the last shop.

We had the new Fun cd playing in the car and we had been dancing and singing at the top of our voices. We pulled into the car park of B & Q where we had a mad 5 mins, dancing and singing in the car. No one paid us any attention which made us laugh all the more! Holly was doing this crazy kind of dance with her hands flailing in the air, head shaking forwards and backwards and honestly she looked like she was having some kind of seizure!! I was crying with laughter. I think even Jack would have laughed if he had been there.

The giggling continued while we shopped and all the way home. As I was trying to reverse the car into my drive, we were giggling and laughing then she said something that made us both laugh so hard that neither of us could get breath! So there we were halfway across the road, blocking both sides, unable to speak, helpless with laughter and tears were running down our faces. We must have been blocking the road for over 5 minutes!

Truly she is the best tonic for me.

Funny girl

Jack hasn't had a great week. The seizure monster has been out to get him. Friday was the best day as he was able to sit up and roll around on the floor. For Christmas, I bought him some clip together mats but still he manages to split them and this means his skin gets rubbed on the carpet. When I was putting him to bed last night, his wee knees were red from trying to get up and his knuckles on one hand were red too.. A bit of moisturiser and this morning they were as right as rain.

When he came home on Thursday he was sleepy from a seizure so I hoisted him onto his beanbag where he lay listless and lethargic. I took this opportunity to get in there for a cuddle, a wee sing song and some tactile play. He rewarded me with such a heartbreakingly beautiful smile that I had a lump in my throat but then the magic was broken as he literally tried to climb out of the bean bag. No mean feat, believe me!

He is such a precious little boy. Mind you he is so not little these days...that boy has been sprouting chin hair for months. I have resisted the urge to start shaving but it looks like the time has come.....oh my god....how do you shave a guy??? Answers on a postcard please....

Gorgeous boy

Recently, with all the stuff in the news about cuts to benefits for people with disabilities I am beginning to wonder at times how I do actually manage to keep smiling. Then someone mentioned families like me who are a drain on the state and it is enough to make me want to scream.

I don't actually get that much from the government and when Jack happens to be in hospital for too long, the little I get is taken away from me as it is deemed that the hospital is essentially doing my job for me.  This is such a lot of bullshit!

Most parents of children with a disability like Jack's are unable to leave their children all day every day in the care of nurses as they do not have the time to give him the kind of care and attention he needs. It costs parents more when their child is in hospital as although often their room is free, cooking facilities are very basic, just a microwave and we all know how much microwave meals cost! Then there is the constant travel when your child is not in a local hospital. On top of that you are still running a home cos your other child is being looked after by someone in your house. I could go on and on but really, what is the point?

So I thought I would give you just a wee sneaky peak into my world.

Looking after Jack, although a lot of work, is by far the easiest part of caring. I love him so therefore it is not a chore. The stuff that gets me down is the endless shit that goes with that. There are so many people involved in Jack's life, many people coming in and out of the house, lots of appointments, meetings, therapies, school. Often the appointments are a few hours away which takes up a whole day. Then there are the everyday niggles that school and respite have, that seem huge to them but make me think....."what NOW?"

Everyday Jack goes to school with a feed pump, feed, suction machine, school bag, magnet for his VNS, seizure diary, school diary, protective helmet, his soft collar for his neck, a spare peg in case his falls out and his emergency meds with the protocol. If I forget any of this it means I have to trudge off to the school to hand it in.

Jack's daily medicine box

Some boxes are inside others and on top of others to make them fit!

As well as that I have to be in for deliveries of all his feed, syringes, sterile water, pads etc then unpack it all and find places to put it. Jack's bedroom often resembles a storage room with boxes piled up. I have to constantly keep on top of what medication he still has, what's required and it seems every week I am ordering something or other. On top of that I have to get the spare equipment for his suction machine from another source so constant juggling and remembering things are the name of the game. Forgetting a medication is a disaster on an epic scale as most of his epilepsy meds have to be specially ordered.

His bed is constantly plugged into the electricity and nightly I have to make sure his hoist, feed pump and suction machine are charged. My electricity bills are not your normal household bills and my heating is just as bad as it is really important to keep him warm.

A set of bedding gets washed every day along a v pillow cover, a protective mat and at least two sets of pj's. I only get so many syringes so they have to be washed and reused. I have to say, in all, this is the job that sucks my will to live the most! Tee hee hee.

When I pack a bag for him to go to respite, it takes me nearly two hours as all his clothes have to be labelled and listed. All equipment going with him has to have their chargers with them and I have to make sure there is just the right amount of feed, syringes etc with some spare in case of accidents. Medicine has to be counted out as you can not give them too much, just enough for the doses while he is there and then again, some extra just in case.

Guess who this belongs to?

This is one half of Jack's respite bag, this part is full of feed, syringes, pads, etc

This is the other half filled with clothes

This is the two parts joined together ready to go

I am on constant call from the school and respite so my mobile and I are practically joined at the hip. Respite doesn't mean "let's party!" it's more likely to be "let's collapse!"

If I was in full time employment, I would actually be working nearly three 40 hour week jobs? No way on earth would an employer be allowed to work you that hard yet it seems the government think you should and save them a fortune.

What do you think?