Happy 12th Birthday

I struggled to begin this post today, last Saturday should have been your 12th birthday with your family and of course we celebrated it with cake and a party (although as you know your mom & gran got so drunk we forgot all about lighting you cake until the next day).

Was it your 12th birthday? Are you 12 my angel or are you forever 9 in heaven? I promised to always celebrate your birthday & try and be happy because that was the  day you blessed us with your life but I’m not sure how I should think of you now as my ever growing nearly teenager? But no that can’t be, do you still grow in heaven? 

I had planned a fancy dinner to raise funds for your memorial page for Cystic Fibrosis, I so wanted to hit that £2000 mark but it all got too much for me and I cancelled it all at the last minute.  Why do I put so much pressure on myself, I feel I should be doing something important on your birthday and doing something in your honour, I want people to say your name & talk about you, I never want you to be forgotten.

So I put party decorations up and blew up balloons and cooked a special dinner for gran, CeCe & baby leighlo, Uncle Pat, Aunty Ann & your cousin Lauryn.  I also had Jim there which I know you would have wanted as you sent him to me.  We released some of your special balloons in the park and tried to fly some lanterns which was a complete disaster but gave us a laugh at the time. 

After hours of dancing to Mike Denver in the front room (I even managed to drag Uncle Pat up for a dance or two) I was told I fell asleep at 3.30 am although I really don’t remember. I think it was safe to say we definitely ‘celebrated’ the day in your honour.

I think I’m choosing to believe that you are forever 9 in heaven and that although your birthday here on earth would have made you older we are just celebrating the 9 years 9 months & 20 days we had you with us.  

Happy Birthday my precious girl, I miss you so much darling but then you know that already.  

Till we meet again.

orlarose.muchloved.com

Órla’s Carriage

I was kindly asked to write a piece for my friend Kate Hamilton at mourningcross.com I thought I’d share with all.
When my daughter Órla was diagnosed with a terminal illness aged 7 years my world was turned upside down. A very quick 24 months later and I knew I was spending the last summer with my precious baby.

During those last few weeks I thought a lot about her funeral, in fact I could think about nothing else, I needed to plan and organise and keep my mind busy.

I researched palliative care and what to expect. I choose songs that I wanted played during her funeral. I decided what she would wear & which favourite items would go in her coffin. It then came to the choice of coffin.

I had buried my father two months previous to Órla and looking at choices available I desperately needed a sign from him that this was ‘the one’ he would want but alas they all appeared cold, dark and melancholy. In the end we choose one that was named Stanley the name of the company my father had worked for most of his life.

When it came to Órla I wanted to be prepared, I wanted her final resting place to be quirky and funny just like my little girl. I wanted pretty & girly not dark woods and cold brass handles. I wanted something very personal so that her last send off was about me & her and no one else.

It seems that a lot of people are feeling the same way and the variety of different coffins available have increased immensely in the last few years. We have wicker, wool, bamboo to mention a few and then there’s the Eco coffins and cardboard variety.

It was whilst browsing I noticed a ‘decorate yourself’ cardboard coffin. I knew straight away that this was what I was looking for, it couldn’t get anymore personalised.  

When the day came that Órla passed I was dreading the coffin arriving, I wasn’t ready for her to leave her bed, her room. The coffin was placed on wheels in my kitchen, suddenly the blank white box I choose seemed like a mammoth task that I had to undertake when I was at my lowest. When we were all at our lowest but it had to be done, so we began drawing, painting, sticking.

What I never imagined was how therapeutic and calming it was. All three of us put Órla’s favourite characters, pictures and sayings around the sides of the coffin. Our two cats meanwhile climbed on top and inside also wanting to be part of it. We played loud music that Órla loved, we reminisced about the past, we laughed, we cried, we drank and we even danced over the following 24 hours in our kitchen in between popping in to see Órla in her bed in the next room. 

By the time her carriage was ready (we no longer saw it as a coffin) we were ready to say goodbye to our beautiful girl. All three of us felt we did her proud.  

Órla had no big funeral, no traditional wake just very immediate family. She was a very special girl and never liked people around her so our work was not to be paraded about but then that was never our intention, we just wanted a more personal resting place but what we ended up with was an amazing experience that we shall never forget.

orlarose.muchloved.com

Cystic fibrosis collection

Last week I arranged a bag pack in our local tesco store in aid of Órla’s memorial fund which goes to The Cystic Fibrosis Trust.  It was a bit scared because although I had helped in many bag pack I hadn’t organised one myself.  I felt it was a bit like organising a party where your not really sure who will show up and whether it will be a success or a flop.

When I first asked my friends I got a lot of yes of course n definitely some check nearer the time but I was confident I would have at least 10 plus people to help me out.  I didn’t want to take up too much of their time so I decided to collect during the hours of 4pm – 6pm which I hoped on a Friday evening would be pretty busy.

When the day arrived I was let down by several people (not naming names) and it really showed me who my real friends are.  I learnt a valuable lesson from this task one which I will not forget in a hurry.

We managed to raise a lovely £700 towards Órla’s memorial fund which I was so grateful for and I chatted to some really lovely people along the way. The public’s generousity never ceases to amaze me.  I got to talk about Órla a lot which always makes me happy.

Would I do it again? Yes definitely.

orlarose.muchloved.com

CF Awareness Week

Grey days

I hate days like today where my grief overtakes me and I turn into a blubbering wreck.  On ‘grey’ days getting out of bed and joining the world is not an option.  I recognise that every other week one of ‘these’ days occur and are part and parcel of my way of coping with my loss.  I allow myself the time to wallow in my self pity and cry about how sad my life is without you in it.  I cry for all the years I’ll never have with you, I cry for all the birthdays that friends have with their children when ours stopped at 9 years.  I try to remind myself how lucky I was to have those 9 beautiful years, I try to recall those early memories that are buried deep inside me to no avail because on ‘grey’ days only images of your last days with us manage to break through only memories of the final hours are there.  No matter how hard I try I can’t remember your happy, smiling face.  

I hate days like today.
  
http://www.orlarose.muchloved.com

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
  
  

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.