A week and counting

So, this is it guys!  One more week and I start my new role in commercials.  As much as this move has been forced on me, because let's face it when the doctor asks you if you still want to be using your hands in 10 years it's a bit of an eyeopener and one really can't be like an ostrich any longer.

 

It has come at the right time and as commercial teams go it is the best I could go to as they do the financial aspect for contracts such as financial evalutions so I can maintein my accounting professional development and therefore qualification.  I already have a commercials qualification and as you may well have guessed I have worked in commercials before.  It's unlikely that someone has a commercials qualification if they haven't worked in that arena before after all.  I know I like the work and so a forced move doesn't feel as bad as it could have done.

 

I have also been a burden to my current management team, one woman in particular and it has reflected on my mid-year report.  I could raise a grievance and it would be won without a doubt, after all, there is an Equality Law for people like me but as my new team has to liaise with my current team I really don't want to rock the boat and ruin a working relationship. 

 

I think because of the latter it has made the forced move that much more difficult to accept.  No-one wants to accept that their disability is dictating their career path.  No-one wants to admit the pain they are in, let alone want to stand out as 'different' in the workplace because emotions sometimes rule the way you are treated.  We struggle enough, both at work and home, and we don't need to have to feel like we are fighting a battle every single day in the workplace.  Trust me, it is bad enough being reminded of how painful and weak my hands are every time I attempt to open a bottle or sqeeze conditioner out of a bottle; I don't need reminding of it by my management chain let alone have the lack of understanding reflected in my report.

 

However, having said all of that the move to commercials is a light at the end of what has been a very long and painful tunnel.  I am still seeing a counsellor to try and learn how to accept the lack of control I feel but my new manager is the completely different end of the spectrum to my current manager and has already arranged for duplicate equipment to be placed in my second work place and for me to work my hours around the worst of the medication side-effects.

 

So the sun is shining, I am training my replacement at work and then I am off to drive into the sunset that is Sheffield for the first 3 days of my new role. 

 

Life at work is about to get better, I am about to be treated to doggie cuddles regularly throughout the days I will work from home and I will be at home at least 2 days of next week to check that my Beautiful B, who has an arm in a sling and is popping painkillers 4 times a day after an accident, isn't doing any activity that can make her shoulder injury worse.  The pretend nursing bit I wasn't expecting but on the upside I get daughter snuggles throughout the day too.  Bonus!

When ‘first year anniversary’ sounds so wrong

Most anniversaries are fun, exciting, something to celebrate.  This one is not.

Today is the first anniversary of the day that Beautiful B lost her father.  The day that she had been dreading since her father had the awful job of telling her that he needed a liver transplant but was so ill that he was unlikely to live long enough to receive a liver as he had 12 months at most. 

Today is the first anniversary that she received a phone call at 5.15 in the morning from a nurse explaining that her dad was in A&E and she was needed immediately. 

Today is the day that Beautiful B watched helplessly as her dad threw up 2 and ½ litres of his blood and the day that she had the last ever conversation with her dad in which he told her that he loved her.  Recalling that conversation is so bitter sweet because he also told her he was scared but she would not be without that memory now because of the words “I love you”.

It is the first anniversary of me answering the phone at 6.01am and Beautiful B telling me she was at the hospital with her dad and was scared.  The first anniversary that I said “I’m on my way” as no other words were needed.  The day I was walked through A&E to the resuscitation room and could hear my daughters sobs as she stood and watched people try to save her fathers life. 

It is the first anniversary of me seeing Tom for the first time and knowing he was not going to make it.  The first anniversary of the day I had to take over and call the family, support his girlfriend as she was only 20 and the one who understood that she was hearing what she wanted to hear from the ITU specialists rather than the grave news they were telling us.  The first anniversary of when she asked me to talk to the consultants as she wasn’t taking anything in.  The day that I watched the vitals monitors and even without any medical training knew that his blood pressure was not supposed to do what it was doing, knowing what to expect when I heard the consultant instruct the ITU nurse to hang another 3 units.    

It is the first anniversary that I sat with 3 surgeons and consultants and was told that they couldn’t stabilise my first husband’s blood pressure even with all the adrenaline they were pumping in.  The first anniversary of me saying “So you are telling me that he is dying?”  Of having to ask the awful question “How long as he got?” The first anniversary of feeling the strange relief that I felt when they said 2 hours as Beautiful B was not going to have to sit there for days watching her father die knowing that I could not have got her to leave and rest.  The first anniversary of the day that the consultants made the decision to continue to adrenaline they would normally stop after the family had been informed of the grave outcome just so that Beautiful B had time to say goodbye to her father.  The first anniversary that my child sat on a chair with her small hand holding the huge hand of her father with her head on his chest for 8 hours whilst he slowly left.

Tonight will be the first anniversary of the night that I sat behind Beautiful B holding her hand knowing that his heart rate jumping from 45/30 to 220 meant he only had a matter of moments and feeling some relief because he had suffered enough.  Watching the pulse in his neck slow down and finally stop and the numbness I felt, the inability to cry because I had to be strong for our daughter.  I could only hold Beautiful B as she howled in horror after he had died and watch her as she asked for time on her own to say goodbye to her father’s body.

Yet, all of this pain is nothing compared to what my Beautiful B was going through.  My role was to understand the numbness she would feel on leaving the hospital, feel the relief that I got her to leave the hospital so quickly, scared that instead she would not leave her father. My job was, and is, to be there for her, to hold her hand through it all and be strong for her.  My role was to take over the role of organising everything with his sister because no 17 year old should be responsible for arranging their father’s funeral. 

My role is to now worry incessantly about how she is coping.  To know that the first anniversary 4 days ago of her sister’s death, although awful, is nothing compared to the pain she will feel today.  To know that Hubby and I cannot give her what she wants, for her dad to give her one last hug and a kiss.  To know that she gets a comfort from dreaming about her dad and feel grateful that she isn’t worrying about forgetting what he looked or sounded like.

My role is to stay strong, to be there for her but to give her the space she needs even if she does not know she need it.  To be close enough to be here if she needs me but to give her the space she needs to feel the pain and learn how to manage it without my constant support because I am not always going to be here to hold her hand through the awful times. 

To sit at work and try not to worry when my heart is screaming at me to hover over her and shadow her just in case she needs her mum as she lays flowers on her father and sister’s grave.  To know that she will be crying and that she has to cry and has to feel the injustice and learn how to keep going through it all.

My role is to think and act with my head not wholly with my heart no matter how hard it is and to understand that it is normal to feel guilty.  My role is to tell her that I love her and to reassure her that I am not going to leave her; that she isn’t going to lose both of her biological parents.  My role is to know that she loves Hubby with all her heart and knows he would never try to take her father’s place and understand the pedestal that she has so rightly put him on since his diagnosis because so much of the past has been hidden from her.

My role is to be the best mum I can be. 

There was once a little girl

When Beautiful B was little she looked just like her dad.  She had bright blonde hair just like I did until I was 5.  I have photos of her at the park next to the duck pond stood in the same place that I stood when I was her age.  She was gorgeous, with the brightest smile ever.

Beautiful B’s dad wanted more children but I only ever wanted one and the baby had to be a girl.  By the time, I may have considered another child we had split up.  Beautiful B became the focal point of both our separate lives.

When Beautiful B told me her dad’s girlfriend was pregnant I wasn’t surprised, he had always wanted lots of children.  Mia, Beautiful B’s first sister was born 8 weeks early and was tiny tiny.  She had severe eyesight problems and by the time they realised she was not growing along the normal percentile and wondered whether a genetic condition was involved, another baby was on the way.

Mia reminded me so much of Beautiful B.  She had blonde hair and looked almost identical to Beautiful B as a baby and toddler.  Like her sister Mia looked so much like her dad.  She was tiny and endured 8 operations before she was 6 months old and by the time she was 18 months old, although almost blind her spacial awareness was amazing.  She looked just like Beautiful B and like her she wore clothes made for much smaller children.

When Beautiful B was 3 and half she was wearing clothes for an 18 month old.  It made for some humorous times when she started talking and people took a double take assuming she was a very advanced 18 month old.  Looking at Mia was like looking at Beautiful B all over again and like her sister she had the brightest smile.

Mia could also be stubborn and I used to smile inwardly when Beautiful B would return home after visiting her and relay a moment of stubbornness because Beautiful B was just the same at that age.  Amazingly wonderful but if she set her mind to something there was no changing it.

Mia had a hard life and she would have continued to have to try and strive through adversity and more than likely prejudice to make her way in the world.  Unfortunately, Mia was taken away suddenly.  What started as a cold was in fact undiagnosed meningococcal pneumonia and by the time it was obvious that it was more serious than a severe cold it was too late and she died peacefully on the way to hospital.

That day will live with me forever.  The way Beautiful B just crumpled on the floor with the wounded howl so frightening.  The way I couldn’t get her off the floor for 25 minutes.  The trip to the hospital where Beautiful B insisted on seeing her sister because she wouldn’t believe it was real until she saw it for herself.  Unfortunately, this was not the worst to come for Beautiful B. 

The 24^th, today, will be the 1^st anniversary of her sister’s death as well as the day her dad would have 42.  Beautiful B has been dreading it.  She relives the day that she bought him trainers for his birthday and took them round early.  She thought his usual trainers needed replacing - her dad said they had another 2 years in them yet.  Those same trainers he wore the hospital on the 28th, the day that he died, 4 days after his daughter, Mia.  Although we knew he needed a liver transplant and that he had 6-12 months to live it was as though his body could not deal with the loss of his daughter.

There is nothing I can do to make it better, I desperately want to take her pain away (or at least be able to reduce it) but there is nothing I can do.  I know that she has to feel the emotions of today (and what is to come in the next 4 days) so that she can learn to deal with the pain and it hurts that I cannot do anything to stop it.  She has to deal with losing Mia a year ago today and that her dad is not here to celebrate his birthday; that he couldn't celebrate his birthday last year as he had to say goodbye to Mia.  Today will never again be a day to celebrate for Beautiful B or any of Tom's family. 

No-one should have to bury their 3 year old sister when they are only 17 years old and no-one that age should have to grieve on the day of her father's birthday because he was taken so young.  

 It’s a sad fact of life that some people are taken early but one that I hate.  As I sit here and worry, I know the pain I am feeling for Beautiful B is nothing compared to what she is going through right at this minute and all I can do be here and be strong.  She does not need to have to deal with my feeling of helplessness on top of everything else.

Today she will visit the cemetery and lay flowers for Mia – a single red rose, a bed of red roses in the shape of a heart and balloons because every young child should have balloons on their birthday.  Today is a day that she will spend with her dad's family and hopefully be able to remember some of the good times.  I will be here waiting for her when she returns.

Today I will hug Beautiful B and remind myself how lucky I am that Beautiful B is as well as she is, that she is stronger than most people I know and that she fights to turn such tragedy into hope for others as she made her career nursing partly because of the battle her sisters have had since they were born.

Twice the amount is definitely not twice the fun.....

Okay, well firstly, I am rubbish at keeping up to date with this blogging thing even when on leave.  Secondly, a valid excuse - Beautiful B's sister died on the 24th of January and Beautiful B's daddy died on the 28th of January.  Yes, you read that right so I am not going to repeat it....

Beautiful B's daddy is not Hubby and Beautiful B's sister is not my daughter.  Beautiful B's daddy (my first husband) had 2 little girls and the eldest, Mia, passed away suddenly.  Tom, Beautiful B's daddy passed away due to a long standing illness 4 days after.  Normally I don't fully name people on here but its a little memorial to then both so I am going to because one day Beautiful B will read this and she would want them to be named. 

I can't even begin to describe what it was like.  The day was going normally on the 24th of January, which just happened to be Tom's birthday and then Beautiful B got a phone call and the next minute she collapsed on the floor and started screaming.  It took me 25 minutes to get her off that floor and I will never ever forget her cries - they haunt me in my sleep - to hear such pain and suffering in your baby girl....

We still don't know what poor Mia died of, we know she had a genetic disorder, all the girls do but we don't know if it she died as a result of it or not.  Beautiful B is blessed in a small way, knowing that she did not suffer and just fell asleep. 

I will never forget Tom having to be helped up off the floor that day as he said goodbye to his little girl.  I will never forget Beautiful B saying goodbye and her hand moving back and forth to touch little Mia's arm.

Mia was such a happy little girl - every single time I saw her she was smiling and laughing.  She had beautiful blonde hair and looked so much like Beautiful B when she was little it was almost scary.  Both of them were such daddy's girls.

Then the unthinkable happened, Beautiful B called me at 6.01am on the 28th and told me her daddy was in hospital and she was scared.  My words "I am on my way" and the phone went down and within 3 minutes I was cursing the car as I was desperately trying to defrost the inside of the windscreen to get to my baby as fast as I could.

I will never forget hearing her cry as the nurse walked me into the resusitation room or me thinking "Shit, the resusitation room!"  I will never forget the way my ex-husband looked on that bed, the one who gave me Beautiful B, the one I have loved, argued with, hugged, laughed with, cried with, cried over and who has always held a tiny piece of my heart, even during our worst arguments, because he gave me my baby.  I will never forget speaking to him before they took him to theatre, the way he looked at me. 

I will never forget the wait, the private discussion with the A & E doctor, the understanding of how grave the situation was, of understanding that the ITU consultant was telling the family in a roundabout way that chances of him pulling through this were slim, of the conversation I had with those wonderful surgeons that tried to save his life when they told me there was nothing more they could do - off passing that message onto others in the family. 

I will never forget the way Beautiful B left his side only twice that day, of how I sat and stroked her back while she laid her head on her daddys arm and chest for 8 hours saying goodbye, of how very brave she was to say goodbye to him after he passed.

I will never forget being completely stunned by the whole thing, but going into coping mode by helping his family as much as I possibly could because they, after all, were grieving so much more than me, of feeling grateful that he was no longer going to suffer both physically and emotionally as he has done for the past few years, of feeling grateful that Beautiful B was not going to have to sit with her daddy for days and that he would pass peacefully.

I will never forget and will be forever grateful that Beautiful B got to have a conversation with her daddy before he went to surgery - as awful as it was for her to see him like that, she will forever hold that conversation in her heart and is comforted that she got to say goodbye, even though she did not know that was what they were doing at that time.

I will never forget the night that Beautiful B came home and told me that her daddy was dying and how I never even questioned it - he wouldn't have told her were it not true but I am comforted that because he knew, he let down all the walls he had built to protect her and they grew so much closer in those last weeks.

I am comforted in knowing that although Beautiful B has lost her daddy, it was the best outcome for him - no-one should have to live knowing they only have a few months themselves but have to grieve their child in that time.  I am so glad he did not suffer that.

It has been a long 3 weeks - a double funeral is the most surreal thing I have ever experienced and far too traumatic an experience for the family and far too long a procedure but a double funeral was required - the family could not have coped with two in such a short time.  The family is distraught but I am comforted that although such a massive blow, they are grieving for both together rather than separately and for a much longer extended period of time.

I do not know what I feel.  I didn't on the 29th of January and still do not today.  I know I am grieving but it is a weird feeling.  Tom will always hold a piece of my heart but we had both moved on but I am not grieving for him as I would a friend nor as a partner - maybe this is what it feels like to grieve for an ex-husband and the daddy of your baby.  I know I hurt, I know the funeral was truly awful, I know that the rock in my chest as his coffin was carried into church and past Beautiful B and I was tremendous.  

What I do know is that I cried for the pain Beautiful B is suffering, for the loss his family are suffering and for the knowledge that I will never see him again, for missed opportunities, for the guilt I feel at shouting at him when I should have been shouting at his girlfriend as it was her behaviour towards Beautiful B that I was angry at, for knowing that Tom knew that I was angry at her and not him and for knowing that he knew that he held a tiny piece of my heart.

What I do know is that he died too soon but that he is no longer suffering and that he had to die to stop the suffering - for that, we all must suffer and in some ways I would rather we suffer than he.  I do know that his last wish was that his 3 daughters were buried with him - Mia was buried with her daddy and will forever be held in his arms - Beautiful B now has a plot next to her daddy for her and his other daughter EM so his last wish will be granted.  I do know that I will forever be in the debt of some very special people who loved Tom for granting his last wish.

I do know that Hubby has been outstanding, as ever, through all of this.  He has given me the space I needed to grieve, been there when I needed him, been patient when it was needed but most of all he understands the pain Beautiful B is going through as he feels it each and every day at the loss of his own father.  I cannot understand that pain and I am grateful every day that she has someone she can go to who can listen and understand.

I am grateful for R, Beautiful B's boyfriend who also understands her pain as he lost his mum 3 years ago.  I am grateful to R who has shouldered so much of the burden, being there during the times when we cannot.  He is such a wonderful person and I hope they stand the test of time - if they do I know she will forever be looked after.  I have spent the last 5 years telling Beautiful B she needs a man just like Hubby and she has one.  Hubby will never replace her daddy, he has never wanted or tried to but he has bought Beautiful B up in a way that her daddy approved of and helped shape her, with her daddy and I, into someone that all 3 of us are so very very proud of.

Born Beautiful

This is one of three posts that I wrote and had problems uploading:

Angel’s mum passed away, it was horrid.  It is still horrid.  The funeral was awful.  

Watching Angel, my sister in every thing but name get up and give such a lovely eulogy was heart breaking.  I said I would drink with her for as long as she needed me to, and I did, until midnight that day.

Angel’s mum lived a full life, she was loved and obviously still is.  She loved Angel’s dad who was also horribly robbed of a wonderful life when Angel was only 21.  She learned to love again and was loved unconditionally back.  She gave up a lovely life abroad to return home when Angel got sick, then she got sick herself. 

What has happened sucks, big time.  On the glass half full side, Angel’s mum moving back to the UK gave opportunity for the family to grow extremely close again and to spend some much needed, and at the time, short time with her.  On the glass half empty side, Angel has lost both parents and feels lost at sea.  She has lived the last 6 months at her mother’s side and finds herself wandering around aimlessly.  I related to that because I did it for 3 days after Angel’s mum died – losing time stood in a shop only to have been in there for over an hour when I got back in the car.

I feel like I am not helping Angel, because I don’t know what to do other than be there and listen.  I watch Angel like a hawk, who is in danger of a relapse while going through such a stressful time but not knowing what I can do to prevent it.  Telling her to slow down is like trying to stop a whirlwind.  I know this is all she needs right now, but it feels like it is not enough.

Life sucks sometimes.  You realise that your parents and loved ones are not indestructible and watching my parents, who were Angel’s mums best friends, fall apart as they waited for the inevitable and then grieved was truly awful. 

I am angry, I was angry in an earlier post and I am still angry.  I don’t like feeling this way.  I don’t know what to do to stop it.  I hate what has happened to Angel, and her family, and my parents, I hate feeling useless and out of control.  I hate feeling like we are all on a hamster wheel and for what at the end of it?

I have decided that we are on that hamster wheel so that we can be loved, we can find someone who will love us unconditionally, for who we are and for what we stand for.  Angel’s mum had that with both husbands and of course her children and grandchildren.  Maybe the heartache is the price we pay for that love.

Rest in peace Angel’s mum.  We will look after each other and Angel will continue to do the good and love the family the way you did.  She is already taking over your role and looking after her sisters as you would and for that I know you are proud.

It always happens to the good ones..

Today Angel is suffering, yesterday Angel was suffering and for 2 years prior to this Angel has suffered.  On Friday that suffering got worse because she found out that the doctors can do no more for her mum but make her comfortable.  Sucks, seriously!  Seriously!  Angel lost her dad to cancer and now she has to lose her mum to it too!  Not only that, on top of that she has her own illness to deal with!

I kind of gave up on God over 6 years ago but if I hadn't I would of now.  If there is one person who does not deserve this much crap in her life it is Angel - she would give her last penny and piece of clothing to anyone that needed it - why does she have to suffer like this?!

I've been there for Angel both through her illness and her mum's and I hope I have been there with a listening ear when she has needed it because I HATE that it is the only thing that I can do - I want to take the pain and suffering away but I can't. 

I cannot begin to imagine what Angel and her mum and her family is going through.  All I know is that I have know Angel's mum since I was 12 and I spent half of my childhood in her house being fed and cared for and loved.  I have been on holidays with her, celebrated Angel's wedding with her, prepared for that wedding with her among so many other things....and it hurts, it feels like someone is sat on my chest and this spontaneous crying is ridiculous.  How Angel is getting through this I have no idea!

I think we all knew, someone cannot deteriorate that much without the cancer spreading, but no matter how much you prepare for it, it is a sucker punch when you find out.  Just thinking about how it must be so much worse for everyone else makes my face hot and my throat close up. 

My mum is Angel's mum's best friend.  Throughout all of this I have been the one to tell my mum what is happening - it is the least I can do to take some of the burden from Angel and her mum.  My mum came back from holiday on Friday to that news - she had to ring my Aunty in Spain and left her crying on the phone at the news.  My mum put a brave face on and I know she will do that until the very last minute and then she will break her heart.  I know it will be one of the few times I see my dad cry, like he did when Angel's dad passed away. 

I hate that I cannot take it away, or the pain away, or some of it away.  I hate that it happens to people that don't deserve it - granted, no-one deserves it but these people, people that I consider my family, are good, beautiful, kind people and yet they have to suffer horribly both before and after and for what???

My glass overflows, it isn't half full or half empty - my life is rich because of those that I love and that love me in my life and I love life.  But seriously...at the moment it sucks!  and I am angry!  and saddened! and hurt! and grieving....for my loss but I don't even need to analyse the way I am feeling to know that I am feeling what I am because I am grieving Angel's loss and for her families loss, for the pain her mum is suffering and the utter helplessness they are feeling because they can only watch her go through it and help where possible.