Your chariot awaits....

A couple of weeks after Jack passed away, Holly had her graduation ceremony in Edinburgh.

We had 3 tickets for the ceremony, not including Holly's one. Jack's one was now free. for obvious reasons, but then David got a job and wasn't able to go either.

So Holly asked her Auntie Jacqui and my friend Kathy to come to the ceremony instead.

During that two weeks, I kept telling Holly that there was a major flaw in the plan and that I didn't think that she'd thought it through properly. She kept reassuring me that all tickets were accounted for and because I was too tired to explain what I meant, I just kept quiet.

About 5 days before, Holly, Kathy and I were sitting discussing the ceremony and the logistics of getting there etc when I brought the subject up again.

This time I had to explain to them that yes, we had 3 tickets but that only two of them were for actual seats and the other one was just a space.....for a wheelchair!

They both looked at me aghast. You should have seen their faces!

As the realisation began to sink in,  I laid out our options.

Option one was just to phone up the establishment, explain that we needed a seat put there instead and the reasons why and hope they could accommodate us.

Option two was to just bring our own wheelchair for one of us to sit in!

There was complete silence while we all thought about it and Kathy suggested that the easiest option was to just phone them.

On further discussion both Holly and I felt that we were too fragile and knew that we would not be able to make the call without crying our eyes out and we didn't want to put ourselves through that.

That meant that Kathy would need to make the call but the more Kathy thought about it the more she felt she couldn't do it either without breaking down.

None of us wanted to go through that trauma if we could avoid it.

So that left us with only one option!

The next question out of both their mouths was " yes but where are we going to get a wheelchair from?"

I explained that the wheelchair we had borrowed for Disneyland Paris at Christmas for Holly was still at my dad's house so I just needed to fetch it.

That made us all laugh as obviously I had really really thought it through!

Problem solving is my thing you know.

Holly was off the hook for sitting in the wheelchair as she had to sit with her class so that left myself and Kathy. I jokingly said that I had the most experience pushing wheelchairs so it made sense for it not to be me.

OH MY GOD you should have seen Kathy's face...absolutely priceless!

She kept saying "really? it has to be me???" Which made me double over in hysterics.

She pays a high price being my friend!!!

That decided, I wasted no time in fetching the wheelchair from my dad's house. It wasn't the most attractive looking thing but it would do. One of the foot rests kept falling off whilst we were in Disney so we'd used the tools we had to hand at the time and it was held on by a bandage! The Beverley Hillbillies really didn't have a look in.

On the day in question we parked at the station next to the university because we would be returning to the university for a reception after the ceremony.

There we were in our glad rags, all dolled up to the nines. Since it was my idea, I took responsibility for getting the wheelchair to the venue.

Believe me when I tell you, that it is no mean feat trying to navigate public transport in 6 inch heels. It becomes an even huger task when trying to navigate said public transport with a folded up wheelchair which seemed to have a mind of it's own and kept heading in the opposite direction to where I wanted it to go.

It was only later that we discovered that one of the front wheels was buckled!

The train was packed solid so we had to stand, I had one hand on the wheelchair whilst clinging onto the luggage rack for dear life trying to stay upright on my sky high heels.

Having successfully survived the train ride to Edinburgh we then had to make use of the numerous lifts and endure the stares of people wondering why the hell we were wandering around with an empty wheelchair. Most of the time, I could barely look at Holly or Kathy in case I started laughing hysterically.

So inappropriate I know.

Once onto Princes Street (the main shopping street in Edinburgh) navigating the crowds became a huge issue. Edinburgh in July is awash with tourists and the pavements get really clogged up so I made the executive decision to go via the Princes Street gardens.

We stopped for a rest there as we'd left early to make sure we had plenty of time.

Kathy and Holly in the gardens

Kathy's seat, complete with Holly's walking stick

After a short rest, we headed off again, pushing the wheelchair which by this time we had opened up as it was much easier to push that way.

Once past the art gallery we had to go down a large set of steps into the next part of the gardens, which turned out to be a two man job. God only knows what people were thinking but hey, this is Edinburgh so really, anything goes.

I was getting a bit hot and bothered as we approached the large set of steps to climb out of the gardens. A man shouted out to us asking whether or not we needed help. I turned to him to say "no, but thank you anyway" and that's when I noticed that he was on crutches. It made me smile as it's so like the disabled community to help each other out even when they are clearly not able.

Once out of the gardens it was another ten minute walk to where we needed to be, the Usher Hall.

I kept asking Holly how much further so that I would know when to get Kathy into the chair. About 200 yards from where we would turn towards the Usher Hall Holly signalled to Kathy to get into the chair. Even getting into the chair was a comedy of errors but we managed it and I had the chair moving before Kathy had properly got her bum on the seat! I did stop to let her get comfy before rounding the corner quite calmly and sedately as if it was all perfectly "normal".

Once at the main door, Holly went off to get into her gown and I parked up Kathy's wheelchair, positioning her so that she could see all the comings and goings. I bent down to speak to her saying "now that you are in this chair....welcome to the world of invisibility!"

Kathy in her chariot!

On cue, just to prove my point, a bunch of students nearly fell over her as they were stepping backwards as a group whilst getting their photo taken. I had to stand at the side of the chair just to protect her! As it got more crowded, she was nearly brained by a person's bag as they tried to get in between Kathy and I. It's a reality that people just don't look down, so if you are not at eye level then you don't exist!

What made us laugh the most though was when Jacqui turned up and she didn't bat an eyelid at Kathy being in the wheelchair, didn't even ask.

That says a lot about the antics of Kathy and I doesn't it???

When the doors opened, we got in fairly quick and I got Kathy's chair into position and laughingly told her that she'd better not need a pee or stand up and adjust her knickers or anything as there would be trouble. I think she was terrified to move!

The ceremony went without a hitch and when it was Holly's turn to go on stage, true to form and following the tradition of all previous award ceremonies she attended, there was a lot of noisy whooping and yelling and we made quite a ruckus for there only being 3 of us.

I think we did her proud.

After the ceremony we made our way outside. It was really crowded so navigating the wheelchair was no picnic and as your average wheelchair is low down, Kathy couldn't see a damn thing.

Holly joined us after a short while and we had our photos taken with her in her graduation get up.

lol

I made Kathy use Holly's walking stick to stand up from the wheelchair. That poor girl was made to play the part for real!

We then made our way to the nearest taxi rank to get a taxi back to the station. There was no way I was pushing the wheelchair all the way back along Princes Street. It was just too traumatic!

In order to get to the taxi rank, we had to cross a really busy street. I was pushing Kathy up the hill to the crossing when Holly spotted one of her favourite lecturers behind her.

So she walked back to talk to her.

Kathy and I just watched her walk away. It never occurred to either of us that Kathy could take this opportunity to get out of the chair since we were now out of sight of the hall.

Instead we watched as Holly's lecturer engulfed my girlie in her arms for a very big bear hug and I knew from that hug that Holly had just told her about Jack.

As they caught up with us there were tears rolling down Holly's face. I had a hard time holding it together myself at that point.

Holly introduced us to her lecturer and we crossed to the island in the middle of the road.

Being an experienced "wheelchair pusher" I had already checked the road to see if there were cars coming and as there wasn't I started to push the wheelchair into the road.

Cue Kathy who wailed "I'm moving" and began to cling onto the chair for dear life.

I was laughing so much that I was unable to reassure her that I hadn't just let her roll off and then nearly gave her a heart attack when I couldn't get the front wheels of the chair up onto the kerb on the other side of the road.

After a couple more attempts, with the help of Holly we made it just as cars were about to run us down.

I was still laughing, hysterically I think by this time!

Kathy though, had had enough and said "aww fuck this, I am getting out" and proceeded to try and climb out of the chair before I had even got it properly on the pavement!

She leapt up so fast that she nearly fell out much to the shock of Holly's Uni Lecturer who tried to help her.

Holly reassured her, that she could indeed walk and then followed a very awkward explanation as to why she was in the chair in the first place!!!

OH MY GOD....I just wanted the ground to open up and swallow us.

As you can imagine, the Uni lecturer made a quick getaway!!!!!

I swear she must have thought we had gone mad.  And you know what, at that point, so did I!

At the taxi rank, as I tried to get the wheelchair into the taxi and fell in head first, I was starting to wonder why I thought making that phone call would be harder than this!!!

We had a bloody good laugh in the taxi but then had to repeat the whole process of going down in the lift at the train station and holding on for grim death to the chair on the train.

You have no idea of the relief I felt when finally I was able to shove it into the boot of the car.

We then made our way to the reception which turned out to be fairly unexciting but to be honest, I felt emotionally and physically exhausted by then so was happy to leave within half an hour.

It was a pretty tough day for us but we made it through in our own unique way and I think Jackyboy would have been very proud of us.

It's all about me me me....and if not....then why not?

It will be 11 weeks on yesterday since my precious boy took his last breath. I don't know how I have survived but here I am, still standing, still breathing.

Every morning that I wake up, for a tiny split second, I have that moment where my mind hasn't fully caught up and Jack is still with us like nothing has happened and then reality kicks me in the stomach.

That alone is enough to floor me. Yet I still force myself out of bed, make myself stand and face the day. It isn't a choice, it's just instinctive.

I am still wading my way through the financial implications of Jack's passing. Having no money no longer scares me, it is what it is. Bad enough that Father of the Year has pulled the financial rug out from under me (his money for Jack paid the mortgage) but now he has done it to his daughter. He has stated categorically that he will not give her any financial support if it benefits me in any shape or form. She is living in my house, so obviously she would have to contribute financially as any adult would but not according to him. No, he would rather see her homeless or having to move out of her home at a time when she really needs her mum and I need her. She has no job yet and is still applying for benefits but he doesn't care about that.

The two loves of my life...

This is a form of parenting on a whole new level, one I could never begin to understand in my wildest dreams....but there you have it.....it's fuelled by bitterness in all it's glory and it matters little to him the consequences for his daughter.

Bitterness that is borne from the fact that we didn't allow him to have his own way during the last week of Jack's life.

Let's be clear, Jack didn't know him. He chose not to know his son but he always blamed me for that.
Narcissists never take the blame for anything, they are always the victims.

Holly and I were Jack's welfare and financial guardians. In order for this to happen, FOTY had to give up his rights to his son, which he did without a backward glance.

We took these powers seriously and we only ever wanted the best for Jack.

So when he became seriously ill this time, Holly and I made some tough decisions. One of those was to allow his father to spend some time with him. This didn't mean that he got to spend the same amount of time with Jack as we did but he didn't see it like that and that is when things became difficult.

He never left us alone for a second with Jack, he gate crashed every personal moment with our beautiful boy yet expected to have quality time alone with him himself. He became demanding and caused us lots of problems in the hospice and created an atmosphere so bad that his mum and Holly were struggling to cope with him. Worst of all Jack became agitated by the atmosphere so things came to a head and I had to ask him to leave. We still allowed him to visit with Jack for an hour in the morning every day until he became too ill for visitors but that wasn't good enough apparently.

So we protected Jack, tried to surround him with all our love, put his needs before ours and made sure his last days consisted of our undivided love, care and attention so that his last hours were spent with the people who had been there for him all his life, Holly and I.

Because we put Jack first and not his father, I have to suffer his wrath and the only way he has to hurt us is financially!

He thinks what he is doing will cause me pain but what he doesn't realise is that I am already in such incredible pain from losing my beautiful boy that anything he does to me at this point can't touch me. It is just a tiny ripple in a huge huge pond.

His bitterness makes him even more ugly than he already is.

Holly and I regret nothing.

So much face rain

Yesterday the local council came and took away Jack's bed. One of our dogs refused to leave the room and lay under the bed. No matter how much I called on her, she would not leave the room while they dismantled the bed.

The bed was funded by the NHS so suffice to say it had to be returned. Whilst I had no issue with that, the fact that they previously had tried to take it back 2 weeks after he died was heart wrenching to say the least and I told them no.

Yesterday morning when they called, I wasn't given the option of refusing, they wanted it so it was only a matter of when. They suggested that afternoon and I agreed.

When I put the phone down I could barely breathe. It has only been 5 and a half weeks since he died. That bed represents so much to me, in ways I couldn't even begin to tell you and now it was another thing that was being taken away.

I cried and cried and then I gave myself a talking to and told myself to suck it up. I went into his room and stripped the bed of all it's bedding, cleared the equipment still left under his bed and put the bedding in the laundry basket. Just ordinary everyday stuff that nearly brought me to my knees.

Loki lying in down on the space where Jack's bed had been

So much of what is happening, I have no control over.

Things have been made even harder by the fact that his father who had very little to do with him the last 18 years withdrew all financial support the day he died.

Although in my head I expected this, the body blow it has dealt me is beyond anything I thought I could possibly feel on top of all this grief.

I have been both mum and dad to his two children. I have been everything to our son whose health needs were so complex that he required care 24hrs a day, 7 days a week. I looked after him myself until he was 14 and his health deteriorated so much that I needed overnight care.

FOTY (father of the year) once told me that it was my choice to look after Jack. Did I have a choice? I gave birth to him,  so as far as I was concerned that was the only choice I ever had to make...to be his mum. I didn't realise that having a child with health needs, who was not society's version of "normal" meant you suddenly got to choose whether to look after them or not.

I chose to be his parent and he chose not to be.

Jack's dad is a wealthy man. He had planned to support his son for the next ten years financially whilst he was still alive. He has just taken his daughter on a safari holiday that cost $20,000.00 and spent £30,000.00 on a new car.

By withdrawing his support financially he has thrown mine and Holly's life into further disarray and turmoil as his financial support was what paid for the roof over our heads. It also covered the huge heating and electricity bills that incurred keeping Jack warm and his vital equipment fully charged not to mention the extra costs of having carers in your home every night throughout the night.

Both Holly and I are barely able to function, the grief is so damn raw. I can't even remember how to make a cup of tea at times never mind think of finding a job!

Benefits at this point wont cover it so I need to do something else.

So we have started to sell off things just to keep afloat. Among them, precious things that belonged to our beautiful boy because his stuff cost the most. Everyone knows that anything you have to buy for someone disabled costs three times the money so it makes sense to start there.

People keep saying to me: take your time, do this and that when you are ready.

Ready, I am a world removed from but needs must and I can't afford to be precious.

"Do you not know that a man is not dead while his name is still spoken"
                                              Terry prachett

His financial support would have given me the chance to take my time to adjust to this new life without my beautiful boy, to just allow me time to grieve and get my head around this huge loss and heartbreak.

No, instead, he is far too interested in punishing me for being the parent he couldn't be, putting Jack's needs before his.

Ten years ago, just after my mum died, he filed for divorce after I had been trying to divorce him for 4 years. He thought he could kick me when I was down but I got up and fought him to keep this house as it was our home but also as an unpaid carer I had no financial future prospects apart from the house. I  got the house but unfortunately complete with mortgage. 

Now here I am again, fighting to keep our home so that I can have one less traumatic event to go through. I know that Jack would have hated this happening to his sister and I.

The only way is up..........