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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.

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Happy birthday darling❤️

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

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

  

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

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

Happy birthday my beautiful angel, mommy loves you.

http://www.orlarose.muchloved.com
  
  

And it hits me all over again

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

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

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

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

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

Will it ever stop? 

Is time not our great healer?

How much more of this can I bare?

Miss you so much my little bubba 💔

  

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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