Archive | August 2015

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 💔