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Thank you Órla ❤️

Today I’m feeling happy, my eldest daughter passed her driving test first go, I’m so pleased for her but that’s not what makes me so happy.  Unbeknown to me Zoëy asked her little sister to help keep her calm during her test this morning, nothing more just to let her know she’s watching over her.   

  As she walked into my bedroom on her way out  (I now sleep in órla’s  room) one of the larger stars from órla’s ceiling had fallen off and stood right in front of my bed.  Now these stars have been used over this last year as signs from órla as each time I ask for her to let me know she’s there a single star will drop to the floor by the following morning.  

Thank you so much my darling for letting me know, once again, that your still here with us.

Love always 

Mom x

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.

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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.

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Our 1st Christmas without you

My girlsimageTomorrow 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.

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Another diagnosis

Órla had been so unwell this last few weeks and she couldn’t seem to shake off this cold. She was put on antibiotics but they didn’t seem to help her.  She was very lethargic and pale and I decided that I was going to take her to Accident & emergency as all the gps visits ended in another course of antibiotics. After a short time in the waiting room we were told that she would need IVs and was admitted overnight.  This was a complete and utter shock this was the first time I had ever had to stay overnight in hospital with one of my daughters except when they were born.

She was kept in for a week of Iv antibiotics and they did several tests on her bloods as she wasn’t improving as quickly as they would have liked. I was just so relieved they were looking into it and not just handing out more antibiotics, the last thing in the world I expected was for them to tell me órla had a life limiting condition.

She had been out of hospital for two weeks by the time we got her blood test results. I will never forget that call, the paed doctor asked me to sit down and asked if I had somebody with me, still I didn’t worry too much (silly me).

‘Órla has cystic fibrosis’ he said ‘and we need you to attend the cystic fibrosis clinic in belfast tomorrow’

Now I vaguely knew what cystic fibrosis was I’d remembered reading about it being terminal and children die young but it wasn’t until I got off the phone that I googled it and burst into tears.

Having already dealt with her autism diagnosis 3 years earlier I was used to fighting for my daughters rights and wishes so I was prepared for another fight, this time for her life.