Missing you

This post somehow didn’t get published so I’m doing it now 6 months later.

I miss you so much darling, it’s scary that the years without you are flying by and lots of new memories are without you by my side. I wish I had new adventures of you to post and new birthdays instead of reposting old photographs of you. I wish Leigh had real memories of you and not just stories told of aunty Órla in heaven.

The new breakthrough drug for cystic fibrosis patients has finely been approved by the NHS in Northern Ireland which is bittersweet but then because of your autism you weren’t good at taking your meds were you my pet, so it probably wouldn’t have saved you.

Why is life so cruel? Why you?

Your great granny mullins passed away last month, but you know that don’t you cause she’s with you and grandad now. We went to her months mind of Saturday and the priest was talking about believing in the afterlife and heaven. He mentioned about how some souls are taken earlier than others (granny was 100) and he believed that it was because they had already done their job and their presence had influenced enough people already that their job was done earlier.

I liked that idea, that you had such an affect on peoples lives when they met you that your job on earth was done quicker than most. I do know you taught me and cece how lucky we are to have life and to be grateful for it. How important family is and how we must treasure everything and everybody around us because no one knows when we just might be taken away.

I love you so much darling.

2 years 19 days

It’s been 2 years 19days since my life changed forever.  My little girl found freedom and was able to breathe easy without anymore pain and I found the courage because of her passing to find my own freedom and break free of an abusive marriage.

So what have I learned in these 2 years 19days?

I have felt pain like I never knew I could feel, heart wrenching gut twisting pain.  I remember feeling pain each time I’d find out my husband had cheated on me and thinking nothing could hurt more than this, then my dad passed away after a short illness and I felt I couldn’t possibly hurt anymore but oh boy was I wrong.  Two brief months later my precious child joined my dad and I was overcome with pain like I’ve never felt.  I could think of nothing else other than wanting to join her in heaven, it was all encompassing and thoughts of being with her wouldn’t leave my head.  If it wasn’t  for my only other child and her finding out she was pregnant the day before Órla left us I know for a fact I would not be here today.

The pain has not eased and I know now it never will.  Life without my youngest child will always be wrong.  I think of her every minute of every day, she is my first and last thought  and if I’m totally honest I’m looking forward to the day I meet her again.  I have no fear of death anymore because it means I get to see my angel but I will not choose this for myself because I know I have another daughter who needs me and also a beautiful grandson.  Only God will decide when I join my baby.

I have also learned to control my grief, I learned fairly quickly that people (especially other mums) don’t want to hear about the pain of losing a child it’s too raw and too terrifying for them to even attempt to understand.  No matter how hard it is I’ve learnt to sit and listen and nod at their children’s achievements without bursting into tears even though my heart is breaking just a little bit more.  Sometimes on low days I search out the people that I didn’t meet through Órla because no matter how close a friend they are it just hurts too much.

I’ve learned to value my own life and realise how precious life is.  After spending 15 years with my first husband who then left unexpectedly and rebounding a mere 3 months later with my 2nd husband and wasting another 15 years on an abusive relationship I’ve finally found my own worth and realise I am complete on my own and don’t need a man by my side. I enjoy life to the full and think in the here and now.

I’ve learnt to take life as it comes, value the friendships I have and not waste time on negative people.  I’ve become more selfish with my time.  My time is precious and I’m not willing to waste anymore of it.

I’ve learned to take chances and opportunities with life, none of us know if our tomorrow comes.

All of this I attribute to the loss of my daughter, she made me realise how lucky I am to have to still have life and not to take it for granted.

I love and miss you bubba as much today as the day you left me 2 years 19 days ago.  I will be forever greatful that you chose me as your mummy and graced me with those 9 precious years.  You taught me so much in your short life and continue to teach me in your death.

Till we meet again xxx

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

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.