4 YEARS

Four long hard years since you left us to fly with the angels, after only nine and a half years of enjoying your presence in our lives.  At times it only feels like yesterday and at times like today, it feels a lot longer than four years.  Thank God for technology I can still hear your voice and listen to you tales on video.  If I close my eyes really tightly and really concentrate I still feel yours arms around me, but your smell is gone forever and I’m struggling to remember it.

Stay with me baby please I need you my precious bubba

Another Christmas without you 💔

It’s been nearly 4 months since I’ve written on your blog, my last post was for your birthday.  So much has happened in those months darling. 

I met and fell in love with a lovely man, a good man who looks after me.  On our first date he bought me a beautiful rose made out of feathers.  I felt it was a sign from you my Órla Rose giving your approval.  On our second date I found out his birthday was the day before yours (a day now that I dread every year) and that evening whilst we were standing outside I noticed a little white fluffy feather, my sign from you to let me know your there, directly at his feet.  

We’re on our 6th month together now and I can’t quite believe I feel happiness again.  For a while I felt guilty that I woke up thinking of him and not you but I know you knew that I could never forget you my darling.  We’re making plans for the future and for the first time since you left us I’m looking forward to my future.  I talk about you all the time to him.  I want him to know you and learn how brave and strong you were.  I show him your pictures and let him hear your voice, he comforts me when I’m having a bad day although I know he can’t feel my pain it’s nice to have someone to cuddle & love me again.

It’s approaching Christmas again, our third without you and myself, Jim, grandma, CeCe and Leigh will all be spending it together.  Grandma put her tree up this year as Leigh is more aware of what’s going on around him the first time since you and grandad went to heaven.  This week I put my Órla angel tree up and began selling your Órla Angel key rings and bookmarks for your memorial fund.  It’s cheered me up so much that I actually feel a bit Christmassy.

I hope you and grandad are happy & excited and looking forward to Jesus’s birthday up there.  We will never enjoy Christmas the same ever again without you both but I want you to know that although I miss you everyday bubba I’m ok and living my life to the full.

Till we meet again my angel xxxxxx

    

2 years 19 days

It’s been 2 years 19days since my life changed forever.  My little girl found freedom and was able to breathe easy without anymore pain and I found the courage because of her passing to find my own freedom and break free of an abusive marriage.

So what have I learned in these 2 years 19days?

I have felt pain like I never knew I could feel, heart wrenching gut twisting pain.  I remember feeling pain each time I’d find out my husband had cheated on me and thinking nothing could hurt more than this, then my dad passed away after a short illness and I felt I couldn’t possibly hurt anymore but oh boy was I wrong.  Two brief months later my precious child joined my dad and I was overcome with pain like I’ve never felt.  I could think of nothing else other than wanting to join her in heaven, it was all encompassing and thoughts of being with her wouldn’t leave my head.  If it wasn’t  for my only other child and her finding out she was pregnant the day before Órla left us I know for a fact I would not be here today.

The pain has not eased and I know now it never will.  Life without my youngest child will always be wrong.  I think of her every minute of every day, she is my first and last thought  and if I’m totally honest I’m looking forward to the day I meet her again.  I have no fear of death anymore because it means I get to see my angel but I will not choose this for myself because I know I have another daughter who needs me and also a beautiful grandson.  Only God will decide when I join my baby.

I have also learned to control my grief, I learned fairly quickly that people (especially other mums) don’t want to hear about the pain of losing a child it’s too raw and too terrifying for them to even attempt to understand.  No matter how hard it is I’ve learnt to sit and listen and nod at their children’s achievements without bursting into tears even though my heart is breaking just a little bit more.  Sometimes on low days I search out the people that I didn’t meet through Órla because no matter how close a friend they are it just hurts too much.

I’ve learned to value my own life and realise how precious life is.  After spending 15 years with my first husband who then left unexpectedly and rebounding a mere 3 months later with my 2nd husband and wasting another 15 years on an abusive relationship I’ve finally found my own worth and realise I am complete on my own and don’t need a man by my side. I enjoy life to the full and think in the here and now.

I’ve learnt to take life as it comes, value the friendships I have and not waste time on negative people.  I’ve become more selfish with my time.  My time is precious and I’m not willing to waste anymore of it.

I’ve learned to take chances and opportunities with life, none of us know if our tomorrow comes.

All of this I attribute to the loss of my daughter, she made me realise how lucky I am to have to still have life and not to take it for granted.

I love and miss you bubba as much today as the day you left me 2 years 19 days ago.  I will be forever greatful that you chose me as your mummy and graced me with those 9 precious years.  You taught me so much in your short life and continue to teach me in your death.

Till we meet again xxx

CF Awareness Week

Dearest Daddy

    
I want to dedicate this post to my wonderful dad whose anniversary falls today. 

We have been 2 years exactly without him now and though it seems strange to say, I am so very grateful to my dad for leaving us when he did for little did I know my beautiful Órla Rose would depart this earth a short few weeks later.

My dad was my hero and I was very much a ‘daddy’s girl’.  I was the one who waited up for him to come home after working late.  I was the one who enjoyed getting him his soda stream drinks and making cornbeef and onion sandwiches for him.  I was the one who went to mass twice on a Sunday so I could get to hold his hand all to myself when he went to evening mass.  I was always the one to go to collect him at the airport with mum when he was on a business trip.  I craved his attention and as I got older was desperate to make him proud of me.

He was an odd man my dad, who didn’t like to mix with lots of people and was very particular about who he allowed in his company.  He didn’t suffer fools gladly and those who didn’t know him may think he was rude and ignorant but for those of us he let into his world knew that he had one of the biggest hearts a person could have.  He loved his family and life for him was about his mum & dad, his wife and his 3 children and his grandchildren as the years went on.

No problem was ever too big for my dad I always knew he would try and fix everything for me to the best of his ability.  As I got older my dad became my confidante, my advisor, my councellor and one of my closest friends and I looked forward to our Friday night chats over a few drinks putting the world to rights.

  
When Órla was diagnosed with autism aged 4 years he began researching it online and when 3 years later she was diagnosed with Cystic Fibrosis he was my first point of contact if I had any concerns.

He was diagnosed a short time earlier himself with pulmonary fibrosis and set about starting a healthy regime and indeed for two years we were all fooled into believing that it might just be ok.  It was not to be, in Jan 2014 my dad was taken into hospital with what we believed was odema but turned out to be heart failure.  He spent 2 very long weeks in hospital being poked and prodded and then came home to spend the next few weeks being cared for by myself and my mum.

During this time myself & Órla moved in to my mum and dads house to help and both dad & Órla could be heard coughing away both asking how the other was.  On 22nd March dads journey ended and almost immediately Órla’s health deteriorated so my mum came to live with me to help care for her.  On 16th June Órla lost her battle and joined my dad in heaven.

It was only then that the full realisation sank in for mum & myself that they had both gone.  My one huge comfort was knowing that my dad was there to meet my daughter when she passed over and knowing she is with him still gives me great comfort.

  
Dad I cannot thank you enough for being my daddy and looking out for me and mine right to the very end.  

Till we meet again

My Last Hours part 2

This last post has probably been the hardest of all to write, it brings everything back so vividly.  It brings me back to those dark days when I just wanted to join her in heaven but I have come so far this last year especially with the help of God, family & friends and my beautiful Órla watching down on me and guiding me to a better life.  I refuse to rewind so I’ll finish the post of my last hours with my bubba and put them to rest once again in the very back of my memory in that closed box.  I will continue to look forward to the challenges 2016 will bring me.

The time is approximately 1pm on Monday 16th June 2014.  Órla appears to have left us, I call the local GP and explain that I think she may have gone (she had been at the house a few days earlier) she says she’s on her way.  Next I ring Paul the undertaker who was also on call as I had met & spoken weeks earlier with regarding Órla’s illness and he knew how important it was to me to have her coffin decorated & designed by myself and my other daughter.  It was waiting in his premises.

Shortly after there was a knock at the door, it was the doctor she followed me into the front room where Órla was and then asked me to leave.  She closed the door and did whatever she had to do to pronounce her dead this was now 1.25pm.   Still there was no tears I was on auto pilot I had planned this day over the last few months that I knew what was next on the list.  

Next there was my mum & daughter to tell.  I rang my brother so he could drive mum up to Newry (over an hour drive) and I decided to leave Zoëy in college until her usual time of 3.30pm I didn’t want to leave Órla but it was important that I was the one who told Zoëy her sister had passed.  That conversation is forever etched in both of our minds.

When I got back my mum and brother were at the house shortly followed by Paul with the coffin.  It was brought into the kitchen and left on wheels ready for us to decorate (I chose a white cardboard coffin) Paul had completed the necessary paperwork and her cremation was to be 2 days later on the Wednesday morning.

  
I had weeks earlier told friends there would be no visitors except close family which consisted of my brother, my mother, my eldest daughter and Órla’s dad (my dad had died two months previously and my sister had only just returned to Canada).

I proceeded to wash Órla and put some cream on her body to help with the smell. I didn’t want Órla to be touched by any outsiders so there was to be no embalming.  I had ‘read up’ on how to prepare a body in the weeks of planning.  I cut both her toe nails and finger nails as she hated me doing it so they were very long.  I dressed her in one of her princess nightdresses and put her pink blanket over her.  There was no denying the ravishing effects this disease had on her body but when I looked at her body I could see straight away Órla’s soul – her presence had already gone.

  
This was not my little girl just the human vessel that carried until her illness took over.  I will always remember my beautiful Órla Rose as the cheeky chubby faced monkey that she was.

  
The next 24hours were a blur, the Monday evening I sat in the room with my mum and Zoëy and drank until I could no longer feel anything.  I remember lying beside Órla and putting her cold thin arms around me, I feel asleep.  When I woke I noticed my mum was still in the room sleeping on the sofa so I got up and went to the couch in the kitchen.  I was happy mum was with her but I really couldn’t bare to be there anymore.

The next day was spent mostly in the kitchen colouring/designing/sticking her favourite characters on her coffin. All three of us were comforted by this, periodically we would all venture into the front room where Órla’s body was and touch or kiss her. Throughout the day we had removed all trace of her medical equipment and brought fans in to keep her body cool, I had bought roses to help with the smell that occurs while the body decomposes.  Although it was bareable at this stage there was a certain corpse smell that could not be disguised.

I didn’t sleep much on Tuesday evening anxiously awaiting for daylight to come and yet dreading what the next few hours held for us as a family.  I have questioned several times my desire to have a small peaceful cremation.  Did I not think Órla deserved the big celebration of all her friends, my friends and extended family to see her final decent? Of course she did but I knew I just couldn’t cope with it, I didn’t want a gathering of people on my last hours with her body, I didn’t want to worry about how I looked or what I would feed them.  Órla hated large gatherings we were her people and I knew if she had the choice that’s what she would have chosen.

I wanted to be the last person to touch her body so before everyone else got up I lifted her body carefully into her coffin, I surrounded her with her favourite toys, her princess pillow and of course her pink blanket.  It looked ……. Cosy. Yes it did look cosy and not the austere look of bodies in coffins usually look. I finished by spreading rose petals all around her.  I was ready to say goodbye – at least to her human body.

The cremation lasted minutes and I couldn’t wait to get away.  We all went to Órla’s favourite restaurant for one final meal there, it ironically had all Órla’s favourites on the menu that day.  Vegetable soup, turkey roast potatoes and cabbage & gravy. We ate in silence and then went to my mums house in Dublin.  The second I got there I realised I needed to be in my own house and on my own, so her dad drove me home. He and I spent our last night in what was our family home remembering our beautiful baby and the nearly 10 precious years we had with her.

It’s now just 18 months 5 days and nearly 4 hours since I heard my little girls voice, it doesn’t get easier, I think about her every hour of every day but the happy memories are starting to come back.  I’m remembering more and more what a cheeky little personality she had, so stubborn and strong minded.  I think less and less of those final weeks & hours.  I have changed my life to appreciate every day we have with our loved ones and not to waste the time on earth we have been blessed with.  Everything I do is in honour of my beautiful Órla Rose, she has made me a better person.

I love you bubba, till we meet again. Love mom🌹

orlarose.muchloved.com

  

My last 24 hours

This post was inspired by a blog I read yesterday where a mum describes the final few days with her son before & after he passed to the other side.  It made me think a lot about my final hours with Órla Rose, our last few conversations, the last food I shared with her and our last hugs & kisses.  I can already tell by the excruciating pain in my heart and the tears flowing down my cheeks that this is going to be a difficult post to write and may take some time but my purpose in starting this blog was firstly as a tribute to my beautiful daughter so that all could share in her short life, secondly to help me grieve & cry and let out my emotions rather than holding everything in and thirdly to show other grieving parents how I’m coping and maybe just maybe they won’t feel so alone on this horrible road. 

So I’ll begin by saying that this day was no different from the last few weeks, my little one had end stages of cystic fibrosis her poor lungs were saturated with mucus and infection.

Órla was a late diagnosis, she was diagnosed with autism when she was 4 and so any illness,any bug, any bowel problems were always related back to her autism so it was only when I took her to A+E that they started listening to me ( gps had her on ongoing anti biotics).  The tests were done and the results were in and our little baba of 6 years & 10 months old was confirmed as having cf and unfortunately alot of damage was already done. 

Fast forward almost 3 years exactly and Órla had not eaten in over 10 days and was on high doses of morphine and an oxygen machine was permantly on in the room (she refused to wear the mask or cannula). Her dad & I had decided to stop forcing treatment 4 months before this as her quality of life was now more important to us and I can honestly say she was her happiest in those final months since she got diagnosed & began treatment.

Her poor little body was just a bag of bones, she refused to wear clothes (one of her autism traits) so we watched how quickly devastating this disease is.  I knew we were close to her end, she hardly spoke and was in and out of consciousness a lot of the time.  Her consultant came to see us every few days and I had googled how long a child could survive without food (do u know it can take months in some children as their little hearts are so strong). 

Her dad & I were not living together and I had a feeling that she could go at any time so I asked him to come stay at the house and take time off work.  Saturday & Sunday passed and there was not much change.  We took it in turns to sit with her as she watched television and then I slept on the couch at night.  She was always sleepy but if you turned the tv off she would tell me to turn it back on. 

 She wanted me to stroke her legs as she loved massages but she said to “do it gently” as her legs were sore, I had noticed they were very swollen which I know is a sign the heart is struggling.  She hadn’t been to the toilet in a few days and she went to get up to go but fell before she reached the door so I lifted her and it was at that moment I realised just how frail my daughter was, it was like lifting her as a baby.  I knew time was running out so I carried her back to her bed and sat beside her holding her hand.  She asked me to get her iPad but she only sat it beside her.  A few hours into the night and she said she was hungry and wanted some cereal (again I now know this is not unusual in the final hours), she took a few bites then sat back to watch cartoons.  I must have dosed off because she told me I was snoring and to stop it.  

It was very difficult to watch her as she could not get comfortable and kept moving, her face was skeletal as was the rest of her little body I barely recognised her as my Órla.  She tossed & turned another few hours and then it was Monday morning, time for my eldest daughter Zoëy to go to college.  I explained to Órla that her dad would sit with her and I would be as quick as I could. She said she wanted to come with us but I said she wasn’t well enough but she didn’t want me to go so I got my ex to drop Zoëy instead.  

Zoëy said goodbye to her sister and that she would see her later, little did we know that was the last time she was to see her alive.  Zoëy found out the day before she was pregnant so she got to tell Órla she was going to be an aunty.  Her response was “so what” but she had asked me later on what the baby would look like so I know she was taking it in.

The next two hours continued to be restless so I decided to give her some of the calming medication I had been given for her in the hope that she could get a few hours sleep.  She took half of it but spilled the rest but it seemed to help and she held out her hands to me, I asked her what she wanted as my autistic daughter didn’t usually like hugs so she said “a hug of course” and I got one of the longest hugs I ever got from her so long that I said lets get you settled for a little sleep now.  She seemed to drift off and I thought it was the ideal time for me to get a few hours sleep before the next night. I asked her dad to read her a story and not to leave her even for a second as she seemed so frail and I went out to the kitchen to call my mum and ask her to come over to help that evening.

Some time later I’m not sure how long but I think it was only minutes he came out of the room and said he thought she had gone, he’d heard a noise that he thought was her last breath.  I ran in and went to feel her pulse but there was nothing.  Her dad then started whaling out loud and I got really annoyed and told him to stop in case she could hear him and she was just sleeping, I also noticed he’d turned off the oxygen machine and I yelled at him again to turn it on what if she was still with us.  Silly now I know but I was so angry with myself & him for choosing that time to leave the room so I wasn’t there when she needed me right at the end.  I have since resigned myself that her big hug was her goodbye to me and that maybe she felt I couldn’t cope with hearing her last breath.

Tbc

Grief

One small little word that has one huge impact on my life.

So how am I doing on this journey?

Most people would say I’m doing really great, I’m out socialising again, drinking and laughing.  I celebrated what would have been Órla’s 11th birthday (oh my god for a moment there I forgot what birthday it was how could I forget?) with dancing and music and relatively few (seen) tears.  I’m sharing pictures of me on Facebook doing lots of exciting things …. Going on my first cruise, going to Kerry with two friends, nights out in Belfast, countless meals out or charity nights.  For someone who spent the last 3+ years caring for a terminally ill child I’m out more than I ever was.  My nails have never looked so manicured, my skin has never had so much cream put on it, I’ve even started wearing make up again on my nights out.  Yep to most people I’m doing pretty amazing.

To my friends I’m still struggling and fighting hard to keep on top of things. I’m desperate to keep Órla’s memory alive and raising as much cash as I can to help find a cure for Cystic Fibrosis.  I mention Órla as much as I can but in casual conversations whilst still being interested in their children and their lives.  I cry sometimes a few tears and sometimes they see my struggles but then I push back the memories and close the door on my emotions again.  They pity me, they can’t imagine the pain but because they love me they will continue being there for me, continue inviting me out and being by my side.  I love these people.

To my close family my mum and my daughter they know I am broken, they see me struggling with grief every day, they know and understand how much effort it is for me to get out of bed in the mornings, how showering & brushing my teeth are no longer important rituals to me.  They support me & cry with me on a regular basis they honestly feel my pain as much as it possible to.  Their constantly checking to see if I’ve taken my meds or eaten that day.  They know what grief has done to me, but they still have hope that I’m coping that I’m moving forward.

Then there’s God (and Órla),  now they really know how I am.  They know my every thought, they know the long nights of uncontrollable sobbing of not being able to catch a breath, they know how dark my thoughts can be and how close to the edge I get.  They know how shattered my heart is and how it will never ever heal again.  They hear my pleas to help keep me strong and keep me fighting to get through this.  Their with me when I go through the details of those last days.  They know how my life has changed forever and will never smile and feel joy like I have in the past, or at least they know it’s how I feel these days.

Happy birthday darling❤️

Thursday 27th was your birthday pet and had you lived you would have been 11 years old, the double digits you always wanted to get to.  I wanted to make sure that I did something upbeat on the day that celebrated the fabulous 9+ years I had with you rather than be sad about you not still being with us.  So I planned a pink themed birthday party with all the people that were part of my healing and are still my shoulders to cry on.  Mission accomplished I think, I will remember your 11th birthday with a smile on my face.

I hope you liked your cake! I wasn’t sure if Pokemon or sonic the hedgehog would still be your favourites so I decided on a fushia pink rose cake with rose cupcakes.

  

Did you have fun watching us trying to get the lanterns to light? I didn’t realise they were so big and I bought a big box load so that’s us sorted for the next 10 years.  We laughed and joked and reminisced about you and your quirky ways, there was dancing and singing and tears but not sad tears I wanted no sadness on your birthday it was a celebration of your life.  Your BFF Niamh was there too her mum let her stay up late that night.  We had sparklers and released pink balloons and sang happy birthday several times throughout the night.

It was a great party and the irony of it all was that although you loved your birthdays you never liked too many people there.  In fact most years it was Niamh your BFF (as you called each other) and cousin Lauryn, grandma and Cece, no one else allowed.  Autism made you who you were but most days you were annoyed that it ruled your life so much.  I remember you asking ‘will I have autism and CF in heaven mom?’ In the weeks leading up to your passing.  You were so happy when I said you wouldn’t.  I know you were with us, I felt you there giggling and dancing with us.

Happy birthday my beautiful angel, mommy loves you.

http://www.orlarose.muchloved.com
  
  

And it hits me all over again

Its been one year, one month and 15 days since I said goodbye to my beautiful Órla, you’d think I would be used to the shock by now after all I was told Órla had a terminal illness, I had time to prepare, to say my goodbyes to get ‘used’ to the idea of her not being around.  I had several months of knowing her time was running out, it was me after all who asked God to take her from my arms to his.

Why then do I suddenly get hit like a bullet, out of blue for no particular reason as if she has suddenly been taken from me in an unexpected horrific accident and I can’t quite believe it has happened.

We bereaved parents all know by now the stages of grief were supposed to go through. Denial, anger, bargaining, depression and finally acceptance. I feel I’ve gone through all of these and more several times over in the last year but it’s the sudden shock that it’s happened at all that hits me over and over.  It’s like that film Groundhog Day where everything seems fine at first and then it suddenly dawns on you ‘Hey you have no right to be happy don’t you remember what’s happened’ and all the pain and loss rips through your whole being once again pulling fiercely at your heart.

Órla and I used to travel every weekend to see my mum and dad, one of the only other places that Órla felt relaxed and safe but the journey was over an hour and a half and depending on Órla’s mood that day could be either very relaxing with her singing away to her favourite Pokemon music over and over or the exact opposite, I’m sure we’ve all seen the movie ‘Are we there yet? Are we there yet?’ Well with Órla’s autism I’m sure you can just imagine.  

Anyway when we would be near home we pass a piece of art called the Topst Turvy House (our own name for it) placed at the side of the motorway near our house and that was Órla’s sign that we are nearly home.  I used to say “we’re home Órla”.  As a matter of routine I still say it now albeit quietly or in my head depending on who I’m with at the time.  Today on my way back from my moms house I said the same thing and my heart suddenly felt like a hand was squeezing it trying to drain any remaining feeling or emotion from it and the realisation that Órla was dead, gone from my life forever hit me all over again. I couldn’t stop the tears and had to pull over the car and spent the next 15 minutes reliving that horrible day over and over.

Will it ever stop? 

Is time not our great healer?

How much more of this can I bare?

Miss you so much my little bubba 💔