Missing you

This post somehow didn’t get published so I’m doing it now 6 months later.

I miss you so much darling, it’s scary that the years without you are flying by and lots of new memories are without you by my side. I wish I had new adventures of you to post and new birthdays instead of reposting old photographs of you. I wish Leigh had real memories of you and not just stories told of aunty Órla in heaven.

The new breakthrough drug for cystic fibrosis patients has finely been approved by the NHS in Northern Ireland which is bittersweet but then because of your autism you weren’t good at taking your meds were you my pet, so it probably wouldn’t have saved you.

Why is life so cruel? Why you?

Your great granny mullins passed away last month, but you know that don’t you cause she’s with you and grandad now. We went to her months mind of Saturday and the priest was talking about believing in the afterlife and heaven. He mentioned about how some souls are taken earlier than others (granny was 100) and he believed that it was because they had already done their job and their presence had influenced enough people already that their job was done earlier.

I liked that idea, that you had such an affect on peoples lives when they met you that your job on earth was done quicker than most. I do know you taught me and cece how lucky we are to have life and to be grateful for it. How important family is and how we must treasure everything and everybody around us because no one knows when we just might be taken away.

I love you so much darling.

I forgive him

Today my darling Órla I’m writing to tell you I forgive him – your dad

 I’ve spent so much of the last 3 years (and probably before that) blaming him for my losing you.  Now I know that sounds ridiculous as you died from Cystic Fibrosis and your Autism attributed to its decline so it’s not as if he had anything personally to do with it – right?

Although if I’m being factual here both your dad and I had the gene that carries CF and therefore we are both to blame for giving you that horrible disease. 

No I’m not talking factual, I’m talking about the day (or indeed days) your dad promised me he had not been unfaithful and as I didn’t believe him I asked him to swear on your life and he did.  

Of course we know now that firstly,  he doesn’t believe in God and therefore the swear meant absolutely nothing to him, and secondly, it was one of the first of many lies throughout our marriage.  What he did know was how I judged his response on my belief and my faith and him knowing how much I believed.

I suppose I needed someone to blame, someone to feel angry with.  It is said that people turn from God at times of grief but for me he was my only link left to you and I needed to stay as close as possible to him if I was ever to see you again – so I turned on your dad.

From the very second the light went out in your eyes I hated him with a passion, I wanted him to have no part in your funeral, I could barely stand to have him in the house.  I turned my back on him and didn’t see him again in nearly three years.  Years we could of helped each other grieve OR NOT we will never know I never gave him the chance but thankfully I also had family and friends and two lovely therapists to help me get through it.

I now feel it’s time to let go of my anger and to be grateful we both have come out the other side albeit it broken and torn were still here when your not.

It was on your third anniversary that I reached out as I knew no one else in this whole world was feeling as I was during those hours except your dad and I.  I missed you so much it physically hurt every bit of me.  

It felt good talking about you, remembering you together.  You are our precious baby and nobody could love you more than your mom and dad.  I felt a great relief as if you were happy with me, and your dad said it helped him too.  Maybe one day I’ll be able to meet him again and remember the happy times we had with you.  I love you my bubba and continue to miss you every waking moment.

Till we meet again xxxxx

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

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

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.

struggling

Today I am struggling with my emotions, if I’m honest I’ve been feeling like this quite a bit lately. I feel that I’m losing control.

Since losing Órla I feel I have no purpose anymore.  I spent all of her 9+ years fighting for her. Fighting to get a diagnosis of her autism, fighting to get her statemented for school so she would get extra help.  This then turned to fighting to get a diagnosis of why she kept getting ill all the time and why the anti biotics never seemed to work.  After receiving a diagnosis of cystic fibrosis it was fighting to keep her healthy and when things started to go downhill it was fighting to keep her quality of life as happy as I could.  Now all the fighting is over and my babies gone, I don’t want to fight anymore I just want to give up.

At first during the first few weeks and months I couldn’t bare to leave the front room where I bought the bed in which Órla spent her last days.  I didn’t want to open the curtains or socialise with anyone including my other grown-up daughter and my mother who had been living with me since my dad passed two mere months before Órla joined him.  I continued going to see my councillor who I had been seeing since the year before.  I cried and cried till there was no more tears left.  Slowly I got rid of the bed stained by Órla’s death and moved upstairs to her bedroom.  Week by week I got through all the firsts, her 10th birthday less than 3 months after she died spent away from home in a spa hotel with mum and my remaining daughter, the first Halloween (her favourite holiday) again spent away from home in some hotel with mum.  The first Christmas spent far away in Canada with my sister, the first Easter spent at home with no one to do an Easter egg hunt for and finally the first anniversary of my child’s passing a day spent trying to forget what had happened the year before with the help of alcohol.

Now here I am approaching what would have been Órla’s 11th birthday but is now her 2nd birthday spent in heaven and I feel more lost today than I did all those months ago when she first left me. 

Everything has changed so much, my dads gone, my daughters gone, my other daughter has a beautiful son, I now live half my time in Newry with them and the other half in Dublin with my mum.  I’m torn between two worlds one where my dad & Órla live and the other divided between houses.  My relationship with my husband had been bad for a long time due to violence and cheating and I only stayed with him for Órla’s sake, with her gone I was free to break lose and I haven’t spoken to him in over a year.  So much in my life has changed.

The reality of my life is hitting me hard.  Alcohol and depression are closely becoming my best friends.  I’m forcing myself to get out and about to mix with old and new friends and some days I can feel ok and go to bed and sleep well but then suddenly the next moment I’m right back down to where I was in those first dark days.  Today is one of those days.

Miss you Órla, miss you daddy life will never be the same.

   
 

Easter Sunday

Another first for our family without órla, I try to carry on the day as normal preparing the turkey & ham, oh how órla loved her turkey and roast potatoes. I go to mass and see all the pretty children dressed in their smart clothes and the odd Easter bonnet.  I’m trying to concentrate on the true meaning of Easter, of Christ suffering on the cross for our sins, of his resurrection on the third day but all I seem to be able to focus on is the little girl sitting across from me in her mother’s arms.  She offers me a shy smile then cuddles into her mummy for reassurance and security and it dawns on me that I will never cuddle órla in my arms again, never being able to offer her that comfort and security that every child deserves.

I’m aware of the complete irony of that statement as I’m sitting here in God’s house and worrying about my child feeling insecure when I know deep down that she is free from pain and any other physical emotions that are negative.  Of course she misses me but she is with our Lord, our saviour how could she ever feel unsafe or insecure again with God’s arms wrapped around her.

Maybe its my selfishness that I won’t get to cuddle my baby girl again that I can’t give the comfort I so desperately need to give again.  I have to accept that this Easter there will be no Easter egg hunt, there will be no Easter egg buying and there will be no Easter hugs from my ÓrlaRose.  This is my new world.  This is the world I have no choice but to accept from now on.

Happy Easter my brave & beautiful girl.  Mummy misses you so much. Xxx

 

 

My ‘rainbow’ grandchild

Rainbow child  :  A child that is born following the death of a child

In the real world, a beautiful and bright rainbow follows a storm and gives hope of things getting better. The rainbow is more appreciated having just experienced the storm in comparison.

I’d never heard the term ‘rainbow child’ or ‘rainbow baby’ before I became a bereaved mother, but since reading the many blogs & articles about losing a child I’ve become very familiar with it.

Leigh is my ‘rainbow’ child.  I found out two days before Órla died that my eldest daughter was to become a mother for the first time.  I was so happy to be able to tell Órla she was going to be an aunty. Her response to this fabulous news? ‘Yeah whatever’ now most would think this was because she was so ill and frail but those of us who knew her well know that this was a typical response from Órla when it was something that didn’t really interest her.  I know she thought about the baby because later that evening she said she wondered what the baby would look like.

A day and a half later my baby was gone, never to see or hold her niece/ nephew in her arms, never to hear her name ‘Aunty Órla’ being called.  I desperately searched the web to read about the afterlife and to see if it was possible for órla’s soul to know and see the baby’s soul before it was born.  After all as a true believer we didn’t ‘just die’ it’s only our physical self that dies.  I saw that in Órla’s body, it was just a shell, I knew Órla wasn’t there anymore.  So where was the baby’s soul?

A lot of people believe that a baby’s soul doesn’t enter the physical body until the moment of birth, that the soul stays near to the mother.  I liked this idea, I liked the thought that my dad and Órla got to know and love Leigh’s soul before we did.  They say children see spirits well Leigh  definitely does from day one he looked past my shoulder and now at 5 weeks old he smiles (yes actually smiles) and get very excited looking over my shoulder.  When I hold him he very rarely focuses on my face like he does with his mum and other people but concentrates on a spot over my shoulder.  I like to believe this is Órla’s spirit bobbing around and teasing him just like she would have done if she were here in physical form.

My ‘rainbow’ grandchild has brightened my life without a doubt but it also comes with memories of when Órla was a baby, how Órla slept/took her bottle/did what at what age.  I know we’re supposed to remember the happier times and not the illness but the happier times with Órla are tinged with ‘what if we’d known’ ‘what if I’d said’ ‘ what if she were born here’ ( Órla was born with cystic fibrosis but it wasn’t detected until she was 6 when the damage had already been done).  Seeing my daughter become the beautiful mother I knew she’d be reminds me everyday that my baby’s not here anymore that I no longer have dreams of what she will look like when she’s a teenager or what kind of adult she will become.  My dreams are now filled with seeing her again in heaven, holding her once more hearing her call me mom.

So yes Leigh is my ‘rainbow’ grandchild but Órla will always be my rainbow.

Orla Rose
3 weeks old

Leigh Patrick 3 weeks old

The perfect coffin

The title itself is an oxymoron , these two words just don’t go together each fighting against each other. The reality is that when your part of this horrible group that we didn’t choose to join of bereaved parents, we have no choice but to choose a coffin for our child whether they are being buried or cremated.

when my dad passed away two months before Órla, I had the horrible task of going to the local funeral parlour with my mum and arranging my dads funeral.  The lovely lady behind the desk showed us a book of a selection of coffins and caskets all of which were  grouped into price categories starting from around 2000 euros.  We scanned the pages hoping that we would see some name or description that might stand out at us as if dad was giving us a sign to say ‘this is the one’ and sure enough there was The Tara, one of the names of the Stanley cookers my dads company made. We were sure this was the one he would have wanted.

When it came to choosing for Órla I was adamant that it was going to be a lot more personal and not just a spur of the moment choice. We were fortunate to have time on our side as Órla had a terminal illness we knew she was on a downward path. I searched online for my options. I know white coffins are usually used for young children or babies but I didn’t like the idea of her being in a wooden box. I’d also considered the many different natural leaf/grass types which I initially Thought I would choose but I felt that Órla would think I’m putting her into a laundry basket just a bit bigger. I then found a company in England that made bespoke cardboard coffins. This seemed to be my answer but on enquiring I found out that these types of cardboard coffins took 3 -5 days to make and deliver to Northern Ireland where I lived. It meant that if I was to choose this bespoke design I would have to order and pay for it in advance of my daughters death and of course I would also need somewhere to store it. Now I knew Órla’s passing was coming quicker than I had anticipated but there was no way I was going to tempt faith even more by having my child’s coffin stored ‘ready & waiting’. By this time I was getting very frustrated. I realised that to get a coffin within a day or two it would need to originate from Ireland and cardboard coffins were still not allowed to be used in the south for cremation purposes. I searched the Internet and came across a company called greencoffinsireland and a kindly gentleman Colin McAteer who not only arranged for a white cardboard coffin which could be hand decorated by ourselves to be left with a local funeral home who would store it for me until I needed it but also refused any payment. The local funeral director rang immediately and wanted to arrange a meet up. I wasn’t too happy to involve a funeral home as I was very keen to keep this a low key intimate affair but I couldn’t have been more wrong about Paul McEvoy & Sons of Newry not only did he agree to store the coffin and deliver it when needed but he helped me with just about every aspect of arranging a funeral with total compassion and respect and completely out of his own pocket. By the end of that day I really felt God had sent me these two men (Colin McAteer and Paul McEvoy) to help lift my worries, I felt an instant bond with both as if my dad was reaching down from heaven hugging me and saying ‘I’m here’.

Paul walked me through all the details of what was needed, took control of all the necessary forms etc which have to be filled in so I could concentrate on grieving. He agreed to be at my beck and call, night or day.

When the afternoon of the 16th June came órla passed away peacefully at home. Paul as promised dropped the coffin up to the house that evening.

My mum, my other daughter Zoey and myself spent the next day decorating the coffin with special pictures/drawings and words that were important to órla. It was as I imagined very therapeutic, we laughed, we cried remembering the funny things órla would do & say and boy did this child have things to say. At the end we all stood back very proud of the vessel that would take my baby on her last journey, knowing that she would have loved it.

Please God

Please God help me to heal, I’m trying so hard but these last few weeks I’ve struggled to sleep, I’ve struggled to remember my beautiful baby girl and how she looked and felt before she got really ill, I’ve struggled to remember my reasons for living. It’s been just over 7 months and today it feels like it has only just happened.

Please God help me to remember why my angel had to leave, remind me of the pain she had to suffer, remind me why I begged you to take away her suffering.

Please God give me the strength to fight through this black smoke and help me to come out the other side a better person. Help me to continue to be there for my remaining child and guide her through the birth of my first grandchild.

Please God give me the faith to trust in your word. I know your reasons are good and this is the journey you want me to travel.