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

CF Awareness Week

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

Your first Angelversary ♥️

I can’t quite believe In 5 days it will be a year since you’ve left me, my world has been turned upside down and inside out and yet I’m still standing.  Most people would be angry at the world, at God, for letting this happen to you.  It’s so unfair that your life was so short and filled with so much confusion and pain but in my hour of need I’ve turned to God.  Now it’s not that I didn’t believe before, my parents brought me up as a good catholic but going to mass every week was not something  I did once I left my parents house. I still believed but not like I do today.

When you got sick I started talking more and more to God, asking for strength & hope and then when your pain was so bad I begged God to take you home to him.  These days I ask for guidance in my life, I ask for peace within myself, I ask for help to keep my mental state at a healthy balance even if it is with the help of man made drugs (there were some tricky times at the start) I try to look at the positives I’ve had in my life and not just the negatives.  I’m grateful for the 9 years I had with you and look forward to when we meet again.

I thank god everyday for the gift of living, the gift of making new friendships and having new experiences. I’m grateful to have my family so close and I’m thankful that I’m finally able to bond with my new grandson without feeling guilty of loving and missing you less.  

That’s not to say I’m happy because I can categorically say that  I will never truly be happy again without you by my side.  My heart will be forever broken but I am learning to deal with the ache of missing you, I’m getting used to controlling the uncontrollable sobbing, my body is accepting the physical pain I feel every time I remember your not here as a new normal.

I hope you are happy in your new home and that your not teasing granda too much. I hope you have lots of new friends to play with because that was something that you struggled with here on earth, you deserve lots of friends.  

Thank you for the signs you have been sending me, I’m sorry I keep asking but I need to know your ok without me. You always seem to know when I need them most. I know your watching over us all and keeping us safe. 

I miss you so much Órla porla but I know your in your paradise.

You will always be ‘mamma’s little bubba and my number one’ (Cece knows the rules) xxx

   
 

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.

Christmas day

I knew this day was coming, I tried to prepare myself but nothing could prepare for the loss I feel today.  My heart feels like it has broken in two. I miss you so much my precious bubba xxxxx

Our 1st Christmas without you

Tomorrow it will be your six month anniversary, I thought I was doing well.  I’m on my medications and I’ve continued to see my councillor every fortnight, ive even started to eat healthier and lose weight because I promised you I was not going to waste the life I’ve been given and try and live it to the full in your honour but today it has suddenly dawned on me that you will not be here at Christmas now I know that sounds silly, of course I knew you were gone and Christmas will never be the same again but today it hit me again like a bolt that I’m not going to ever see you open your presents again, im not ever going to hear your questions about S anta again, I’m not ever going to wrap anymore surprises for you.  I can’t imagine ever wanting to decorate a tree again or cook a turkey dinner, I cant imagine Christmas ever to be happy again without you.

Grandma and I decided that it would be easier to be in a different country this Christmas as it’s our first without you and grandad, I’m glad you have each other.  We’ve decided to go visit aunty Céline in Canada and as much as I’m looking forward to seeing them all im wishing it was all over and 2014 was done.  I know you and grandad had a word with God and sent us a beautiful gift to help us look forward and CeCe is very excited about being a mommy, I’m so very proud of how CeCe has coped this last 9 months, she has looked after grandma and I every day and soon baby Leigh will be here for us all.

I really wish I could spend Christmas with you and grandad just one more time.

5 months

Today it is exactly 5 months since my angel gained her wings, in fact to the minute as I’m writing this, 5 months since I’ve heard her voice, 5 months since I’ touched her thin but warm skin or felt her arms around me.  How can it be only 5 months when it feels like years? sometimes I still hear her call me but then realise it cant be.  I still have her drawings and pictures all over the fridge as if nothing has changed and yet everything has changed.

Last night I decided to write to all the cf mommy’s that travelled beside me on this journey explaining how i found it difficult to read their posts about the struggle they are still having with their little ones about how hard it is for me to read how their children are doing.  I would give anything to be still struggling with Órla, to have hope for the future again.

The road I am walking is very lonely with very few passers by, even the closest people do not feel the bumps and turns in the road as I do.  How i wish id never had to walk it but I know that i will not find peace until i have.

One thing I have promised myself and Órla is that I will live the rest of my life to the full and not waste any of it.  After spending the last 15 years in an abusive relationship and fighting for Órla’s rights as an autistic child and then caring for her after her cystic fibrosis diagnosis I felt I lost myself.  I’m still not sure who I am other than the mommy to two beautiful girls but I’m sure a hell gonna try and found out.  Órla and God, i believe, gave me this second chance and I will not let them down.