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.

   
 

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 💔

  

The Terms of My Surrender | Alive in Memory

Originally posted in Alive in Memory.     

The Terms of My Surrender | Alive in Memory.

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

   
 

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