What a difference 2 years makes…. Life without you!

When you died I began to write this blog to share with everyone your adventures of the short 5 ½ months you spent with us. In writing this I felt it helped me deal with my grief that bit better but it also made me so proud of what you achieved while you were here and the many fond memories you gave us which we will treasure for a lifetime.

The fundraising was a great distraction and gave us a sense of fulfilment to your memory and to honour you and what you gave us in your 5 ½ months. The first nine months of fundraising was just so busy and we always had some event going on, while this did not fully take from the grief I was feeling it sure did distract and make me think positively towards thinking about what you did achieve and not what you could have done or would be doing at certain milestones of your life.

The first few days, weeks and months were extremely tough so many times I just broke down and cried my heart out wishing things were so different and wishing you were here and wondering why this had happened to you why this had happened to us. Writing this blog sure helped me along the way and made me realise just how much you had done, how much you had achieved, how brave you were and how much quality life you had compared to other sick children.

When I see a robin it makes me smile. From as far back as I can remember and what I was brought up to believe when a robin comes close it symbolises death is near. I’ve always believed that this meant someone was going to die. Now I’ve spun my own belief on it. J At your funeral a robin distracted us in the church bobbing up and down high up in the window trapped inside; this made me feel you were close in presence like you wanted me to know you were right by my side. Since you’ve died I’ve had many instances like this where a robin sits on your headstone, sits on your grave, sits on my decking looking in my back window and even one day while in training for the mini marathon and finding it tough on the last hurdle a robin flew in and out of the trees alongside me. So people may be sceptics but I’ll believe what makes me feel good and every time a see a robin I know you’re right by my side J

The whole inquest process was both physically and mentally draining; however the continued charity work distracted us from worrying about that. Your sister was so brave and uplifting to us, she gave us a reason to get up in the mornings and keep us going. She talks about you all the time, she looks at your pictures all the time, she reminds everyone that she has 2 brothers not one (because sometimes people forget) and she lets us know how much she misses you and how much she would love you to be here.

In March I fell pregnant, this was a tough decision which was so emotional for us to even consider. The fact that Olly was going to arrive in December would be bittersweet but I think it was just meant to be. We could now be happy at this time of the year again and celebrate your life not cry for our loss. I believe you gave us Olly as a gift to show us we are great parents and we deserve to be happy again. Olly arrived on the 16^th December and when your dad and I held him in our arms for the first time we cried our hearts out with happiness and sadness. It was like I could feel you though Olly, the whole experience was so surreal and emotional. Your brother is the image of you by the way; you are identical in so many ways. People reminded me of the likeness and even though when I compare pictures I can see the similarities but when I look at Olly I only see Olly and when I look at you I see only you. There is no weirdness and to me it’s truly special. It’s almost like as when I see Olly growing up I can catch a glimpse of what maybe you would have been like.

Throughout 2010 there was so many times when I sat and thought “this is the first time….. without Billy”, new years eve without you, our first time to Cinema as a family without you, the first time to mass without you, the first time in Tramore without you, Easter without you, mothers days without you, fathers day without you, and then came your first birthday it was heartbreaking to think you never got to celebrate your first with us, we never had a birthday with you… but I just kept trying to focus on what you did and not what you might have had or done. Then came a time when we could no longer say “this time last year…… with Billy”. This was like another chunk from our hearts as there could be no longer a “this time last year”.

30^th September 2010 I came home from work to find that your dad had cleared your room out! He rang me at work to tell me what he’d done and I cried all the way home and when I got there it was worse than expected. The room was stripped back to a shell and all your stuff stored in the cold attic. I sobbed for hours as I plodded up and down the attic stairs retrieving your stuff back down and putting them back where they belonged but it was no good your scent was gone it was like I’d lost you all over again and I thought your scent would never return. Within a few days your scent returned. I was harsh at the time but I do know that your dad was only trying to help and save me the heartache of clearing your room out to get it ready for Olly.

Your first birthday we wanted to celebrate, we decorated your grave and that night let lanterns off to the sky (T & Al’s however only managed to the tree J) We really missed you on this day, it hurt to think we could not give you cuddles and spoil you with gifts. And just after celebrating your brothers 1^st Birthday was another bittersweet occasion as it made me think about what we never got to have with you. Although after 5 ½ months with Olly we are faced with this feeling for all his developmental milestones. It’s so hard to think positive all the time sometimes is good to just scream or have a good cry.

It came to your 1^st anniversary mass, some people wanted it at the weekend and then do something after mass but something your dad and I didn’t want was a big fuss. We wanted it to be small, simple but personal. It was so frosty that morning and we practically slid to church @ 9am, visited your grave and that night lit lanterns and let them off to the sky. It was just beautiful. Christmas came then and I have to say Olly & Abigail really made it for us. We really missed you so so much and it felt Christmas was missing something to make it complete. Santa brought you a personalised memory box last year and we have all your keepsakes, personal items, favourite toys, best clothes and blankie in it. Your blankie is my favourite as whenever I’m feeling down or feel I need you I open the box, hold the blankie close and your scent just warms me right up. Your blankie never lost its smell but the scent seems stronger when I need you most J

Your 2^nd Birthday came then and it was just as painful if not more. Seeing your cousin Faith (who’s just 7 days younger than you) can sometimes break my heart as you and her should be the best of buddies, what stage she is at is what stage you should be at. The things she does is what you can do only we don’t get to see you do it L Most of the times she brings a smile to my face as she can paint a picture to me of what life is like for you now in a sweet sort of way.  We let some balloons off at your grave again this year then we had cake and treats back at our house and before everyone went home we let lanterns off to the sky. Another happy/sad day for us!

On your birthday by chance an appointment became available in the tattoo parlour. For ages I had wanted one and I seized my opportunity. For one hour I sat and the amazing tattoo artist imprinted a cherub on my inside arm with an image similar to you holding a mended heart in its hands. I love my tattoo, I love that I’ve got it done and as long as I will live I will never regret having it or getting it done. It’s so special to me that no matter when, at any stage of the day I can look down at my arm and think of you, visualise you, it’s just an amazing feeling!

On every card we send on every occasion we celebrate and whenever we talk of family you will always be included. At the moment I have three kids and always will have three kids. When I sign cards I include you because you will always remain part of our family, you lived, you were a person, you are part of our family and people should not feel uncomfortable speaking your name or including you in our family because that is something that will never change.

Its now coming to Christmas and your 2^nd Anniversary and when people used to say “Time is a great healer” I never passed much remark but now I LOL. Time most certainly DOES NOT heal; our hearts will be missing a piece forever. Time on the other hand does help you deal that bit better in everyday life but at certain stages of the year especially your Birthday, Anniversary & Christmas I find gets harder each year. With Olly now getting boys toys from Santa its even more difficult because while you may be getting the same from Santa as Olly, Santa’s gotta take it to Heaven and everyone up there have the best seats in the house watching your expression as you receive your gifts on Christmas morning!

So what is life like without you? Painful…. In every aspect!

Everyday I think of you, I may not get to visit your grave as often as I’d like to but to me your grave is just a place we buried you, a place where you had to go to make your journey to Heaven. I don’t feel bad that I don’t make it there everyday because everyday you’re in my thoughts, your in my heart, I carry you with me everyday of my life. Everyday I wake I think of you and wish you were here, every time I smell your blankie I wish It was wrapped around you and you in my arms, every time I fall asleep I wish to dream of you. No matter where I go no matter what I do I will always be thinking of you. My life will never be fully complete again because you are not physically here with me.

I have come to understand a little better that where you are now is a paradise, no more pain, no more needles no more procedures, free and happy at last. You play in Heaven’s Playground everyday with all your angel friends hopping from cloud to cloud as you watch over us. I can picture your infectious smile as you catch the bubbles we blow up to you each day and gaze in amazement when the lanterns light up the sky. We are privileged that we have my own personal angel to look out for us and our family.

We have met some amazing people because of you buddy and we’ve made some fantastic friends via Heartline, Magicmum, Facebook, Crumlin, Heart Children Ireland, 22q11 Ireland and may more. Your bravery and courage in all that you went through is an inspiration to all. I love you from the deepest end of my heart and you are dearly missed by all.

How very softly you tiptoed into our world… almost silently. Only a while you stayed but what an imprint your footprints have left on our hearts

xox Miss You Little Man xox

What we’ve done and what we’ve achieved…

2010 CHEQUE HANDOVER

In Jan 2010 we began our fundraising campaign for Our Lady’s Children’s Hospital Crumlin, to reward them for the amazing quality of care they gave you during your stays. St Teresa’s Ward is renowned for its care; the staff is second to none and its surgeon’s world class. We met many amazing brave babies during your stays on St Teresa’s Ward and we felt it our duty to give something back and make a difference to the lives of those seriously sick children.

Our starting point was to set up The Billy Murphy Memorial Fund and design a logo with the help of Nevada Designs. We then compiled database of all local & national businesses that we felt could help us on our mission to raise at least €50k for OLCHC.

Among the list of charity work we done in your honour were Wax & Shave April 2010 night with the fantastic support of the staff of Wheatfield Prison, Wags Table Quiz 2010 and Wags & Lads Table Quiz 2011 with fantastic support from Edenderry Town FC, might I add I did you extra proud being on the winning team both years J We held 2 other Table Quizzes with support from Edenderry Coursing Angling Club & O’Donoghues Bar & Lounge. My amazing uncle Martin held Darts Tournaments in 2010 & 2011.Two outstanding prison officers from Wheatfield Prison Conor Fennessey & Neill Connolly Walked the Wicklow Way 132km hike over 4 days, an amazing achievement in 2010. Local Schools & Playschools held Pyjama Days, Teddy Bears Picnic, No-Uniform Days, and Raffles while others donated money to the fund. We’ve held The Billy Murphy Memorial Golf Classic 2 years running now and with great work from Alan Higgins both years were huge successes having Shane Lowry as our patron. The Flora Ladies Mini Marathon 2010 saw 36 people run, walk & jog the 10k for The Billy Murphy Memorial Fund I even did it while pregnant on your little brother. In 2011 we’d a smaller group but I managed it after a 3 hour exam in Croke Park jogging the full 10k, passing that finish line gave me such a sense of achievement. Another officer from Wheatfield Prison Eoin Hiney did the Wexford Strawberry Festival ½ Marathon in 2010, a group of strangers from Herbalife approached friends of friends to do the Dingle Half Marathon in 2010. Two of our best friends Martin Moules & Alan Connolly ran the Dublin City Marathon in Oct 2010. In May 2010 Offaly & Kildare managers agreed to play Charity Football Match for the fund. And in December 2010 another stranger Frank McNally musician from Portlaoise and his wife Siobhan approached us to do a music festival which was ran across 3 pubs and was hugely supported.

The support and encouragement we received from local and national business was amazing, strangers from near and far wanted to get involved and do something for the fund. This support touched our hearts and our families were the backbone to very successful fundraising. During 2010 & 2011 we raised almost €70k through The Billy Murphy Memorial Fund for Our Lady’s Children’s Hospital Crumlin. With this money Convertible Chair Beds as well as High Back Chairs and Foot Stools was purchased for the rooms in St Teresa’s ward. Over €10k was also donated to the Ladies Committee in assisting them with a break away area for parents to ease the stress of long hospital stays, meet with other parents and have a kind of home away from home. The balance of funds was split with St Teresa’s Ward improvements and research.

When its all down on pen and paper I just cant believe what a difference you have made by existing, you’re presence in those 5 ½ months was just powerful and you’ve left an imprint in the hearts of everyone who has heard your story and everyone who has supported the fund.

What was said…

Because your death was unexpected your case had to be sent to the Coroner Dr Brian Farrell. From January to April 2010 we met with staff in Crumlin for the results of your post mortem and a chance to get answers to questions we had surrounding your death. The first meeting 21st Feb 2010 was cold and painful and we learned that your renal surgeon had not attended your surgery at all. This same surgeon failed to show for the first meeting to defend himself so another meeting was called when it suited him after he had a chance to swap stories or versions of events (in my opinion). This next meeting 9^th March 2010 was even more painful than the first, as both anaesthetist and renal surgeon sat up talking to each other to what looked like a rehearsed story and us being told that what was said at the first meeting was to us was taken out of context and there had been a breakdown in communication. I came out of that meeting so angry and frustrated so I took matters into my own hands and requested your medical records to do my own research and seek help and advice. In the meantime the Risk Management Team did a risk assessment and sent us results, this was followed up with a meeting 16^th June 2010 which I refused to attend because I didn’t want to be hurt more my their confused stories. Your dad attended and when he told them he’d like to record the meeting he was refused, so he came home.

Your medical file arrived soon after this (it was massive) and I found so much from this and with it came so many more unanswered questions!

25^th March 2010 three months after you died the Coroner asked us had we any outstanding or unanswered questions. Of course we did, you died unexpectedly, your renal surgeon never showed up for surgery, you were given medicine which was on the list to avoid; no cardiac review was carried out pre op. For months now I had all these questions and what if’s running around inside my head. On writing to the Coroner it was only in June 2010 when he decided to call an inquest as he felt we had not been given sufficient answers and this he felt was the lease we were entitled to.

After a lot of back and forth to the Coroner’s Office the inquest was heard on 15th April 2011. From 11am – 6pm we sat as they interviewed and delivered reports to us from all the parties involved in your death. Your renal surgeon stood in the interview box and when asked where he was that he wasn’t in theatre and he replied “I don’t recall”, and as an inquest only seeks to find cause of death not blame he could not be challenged. A lot of his answers were vague and he could not even look at our representation in the eye. Dr Farrell Coroner had made his decision and he consulted with our legal team on weather we were happy with what we got. We felt it necessary to get an independent medical report and review of your records to ensure all answers were covered and nothing had been concealed. This took another few weeks and then we were back to the court again for deliberation which returned death my natural causes! It was over now and it was a huge sigh of relief that we could move on from medical grounds anyway.

The true version of events that happened that day we’ll never know but hand on my heart I can say I fought the hardest I could to get the answers we deserved!

Christmas Day

25th December '09

It was horrible waking up without you here christmas morning, just horrible. All you presents lay in your room, untouched, waiting to be opened... so unfair.

Abigail gave us a reason to smile this morning, she was so excited and overwhealmed by all the gifts she had to open, more excited after each opening!!! Behind our smiles tho our hearts were aching, aching for the want of having you here, holding you as your eyes lit up watching abigail getting over excited. Sitting you into you beep beep santa brought, or lying you on yer play mat and watching you play with all the activites it had for you, another gift from santa.

Rudolph was so messy, he left reindeer food all down the stairs, all over the sitting room and lefts the packaging out in the front lawn, abigail was giving out about how messy he'd been, santa ate his cookies, had milk and beer... not a good mixture santa!

Dinner went ok, we went to visit you before dinner, just your dad and I as roads were very slippy. After dinner we went up and opened all you lovey gifts from all your friends and family. We laid them out in your room for all to see, it was heartbreaking seeing all your clothes and toys... never to be used or worn by you, so very unfair!

Our 1st day of many without you in our lives... how was it??? Well right now i just don't know how it was coz i'm numb without you, still in a state of shock, in a little denial and utterly heartbroken...

Farewell Lil Man... til we see you again...

24th December '09

Christmas eve is my most favourite day of the year, even more so than xmas day, i just love the excitement, hussle and bustle and all the preparation for one big day! Xmas Eve will never be quite the same again, maybe in time i will get back my love for it again, but i'm not expecting this anytime soon.

I hate goodbyes and in your case it's not goodbye chic coz u'll always be with us no matter what, we may not be able to hold you in our arms and physically feel you but we will feel you in spirit and in our hearts coz no matter what you will always be a big part of our hearts no matter how broken it may seem now.

When you were born we always knew there would be risks of you dying, but that risk we didn't expect until heart surgery considering how well you were doing. Never for a minute did i think we would be met with this day so soon. We prayed everyday that this would something that would not darken our door. Teresa your godmother did my hair 2day, she's been so amazing this past few days, a true godsend. She is so proud to be chose to be your godmother. We gave Teresa and Paul their xmas presents from you today. Paul & Trish have also been amazing this last few days. Our whole family have been a backbone of support not just the last few days but since you were born they've been fantastic.

More ppl came to visit you today, you did more in 5 1/2 months and met more ppl that any other child your age, you sure did get places chic, a little charmer you've been. We took you downstairs for prayers , the coffin was brough in, time was getting close. The room cleared, this was it the moment since monday that we'd been dreading. Your grandad Ollie (in good intentions) didn't give us much time to linger together. It was like 2 magnit forces pushing against each other as i walked you to the coffin. It broke our hearts to lay you into that coffin, your new bed. I placed you down and with you was your snuggle blankie comforter, rosery beads and elmo from your grandad kelly, pack of milybar stars from Kathleen, pic of abigail for you to never forget how much you meant to her and i wouldn't let you go without you doodie and it was clipped to you with a tigger clip so you wouldn't lose it.

I gave you a kiss so strong, it was enough to last upon you forever, no goodbyes coz this wasn't goodbye you were always gonna be with us deep in our hearts. Paul drove us to church, we carried  you in the back of the car with us as you lay in your angel white bed. All family and friends walked behind us to the church. We cried the whole way to church, your dad was such a great support even tho he was devestated. The church was jammers, for a christmas eve and a baby of just 5 1/2 mths you sure did draw a crowd... a stylish farewell ;-)

Mass was beautiful, perfect in everyway, Mag & Gay sang beautifully. During the whole funeral mass i was completly distracted by a robin flying high over the alter, he actively flew up and down the window and across the alter high up from window to window. A robin had sat at my back kitchen window last week and hearing so many stories of how robins are related to death, it was kind of comforting as if you were giving us a sign that things will be ok and your safe and healthy now. Make ya wonder???

Mass ended and we brought you to your place of buriel with my nan & grandad. Your grandad ollie carried you up the aisle, however he managed i don't know, maybe you helped him through it. Grandad kelly took over, followed by Liam, Glenn, Dotty, Martin, Paul and finally your dad took you in his arms for the final steps, the last hurdle. The buriel was deeply upsetting for all of us, unexpectidly uour big sis abigail took an awful shock and went into hysterics when your angel bed was lowered into the ground. It was heartbreaking listening to her cry out for you, absolutely heartbreaking. I explained that down the big scary hole was a tunnel and thomas the tank engiene was waiting down there to bring you through the tunnel and up to heaven in time for santa to arrive. Don't ask me where this idea came from but it just came to me! She calmed down soon afterwards.

During mass, Paul did a reading, Kim & Liam prayers of the faithful, nanny's brough up gifts, ro ro & shirley brought a pic of your smile and your liverpool jersey and runners, glenn & maggie brought up your xmas cards and your musical mobile pooh, abigail brought up your bubble, Luke read the offortury and Teresa read the communion reflection i put together. Ollie (good in thoughts again) rushed us home so diggers could fill in the grave! Imealda dropped in xmas deserts and cake for the after service. Tina & Ray had a beautiful spread on of sandwiches i think chicken and sausages and soup.

I went upstairs to gather my thoughts, the rustle and bustle of downstairs made me realiase life must move on, time cannot stand still and time cannot move backwards unfortunately... I wished the world could just stand still or time move back so we could relive all those happy memories once again and treasure them even more that we had done. Little by little ppl left our house and then there was 3... me your dad & abigail.... not 3 tho 4 coz it'll always be 4 well for now anyway, maybe in time you'll have a little brother or sister. But for now it'll always be 4, the 3 of us and you in each of our hearts.

Being on our own was short lived, mammy & sarah came to help us prepare for 2moros dinner. Dotty came and Laura was in from next door all showing great support as always. Rosaleen, Luke, Maggie, Johnny & Kathleen came to help us lay abigail's presents out and leave room for santa to leave his presents down for her. The room was jam packed, she was gonna be a busy girl in d morning.

We then went off to bed, what would be our 1st night without you here, knowing you'd never be 'here' physically again...

1 day left...

23rd December '09

Walking up with you inbetween us was so special, just like auld times eh? During the the rosery last night i felt this warmth right up my back, it lingered for ages then i felt my insides freezing cold. A short while later yer dad got a simiular feeling. It was like you were letting us feel your pressence.

We laid you out i your room today, the sitting room was just too warm. i sat downstairs for a while this morning arranging readings, prayers, the offortury and the reflection. I dont know how but somehow i got the strength to write the communion reflection. You had so many visitors 2day, loads of family & friends came to help out, make tea and food for ppl coming and going. I made an album of all your great memories you gave us and eventually got round to filling all those empty photo frames and albums...

We took it in turns to sit with you and chat. In the back of my mind all day i was in denial of what reality was. i kept so busy i didn't have to think about what was happening. The Lourdes Fund called to sympathise and say that a spot remains open for me to go to Lourdes because they had decided to send me and you at the last meeting. The Carbury Carers sent in a chq to cover food and refreshments for the few days. Ppl were just soooooo nice. Ray & Tina and neighbours and friends brought food and drink, ppl could not do enough to show they cared.

Pat Ryan came to say the rosery again. We brought you downstairs for the rosery, how handsome you looked for everybody, handsome georgeous lil man how could this be happening?

We laid you in your room 2nite and put the camera monitor on to keep an eye on you throughout the night. Tomorrow we face the hardest day of our lives yet... saying farewell to our beautiful handsome lil man xox

Bringing you home:

22nd December '09

I woke up thinking i had just had the worst nightmare ever, reality soon set in. Brought Abigail down to give yer preschool teachers der xmas presents. We hen went to see Patrick Larkin funeral director to put plans in place. I got photos onto a disc and left them with Sheila to print. Laura did my hair and then i got a telephone call from Kathleen to say you were ready to come home. Your grandad Ollie took us to pick you up almost killing us coming off the enfield road onto the motorway. Close call...

Teresa met us up there and both nanny's came. I brought up one of your xmas outfits to get you kitted out in and a grandfather hat. As we entered the mortury omg it was painful seeing you just lying there, alone and cold. The man in charge dressed you in your clothes and the chaplin said a few paryers. Kathleen and some nurse from St Teresa's Ward came for the few prayers. How handsome you looked in your xmas clothes, so so handsome.

We brought your moses basket to the hospital to bring you home in, teresa brough nanny kelly home and we sat you in the back with your dad and i the whole way home. I then lifted you and carried you into the house where family and friends waited for us. We let as many ppl as possible hold you before we help you in our arms for the rest of the night. The rosery was @ 9pm, abigail was in bed before it all started coz all that amount of ppl would just confuse her. When she seen you, her first words was "Whens is he gonna wake up"

Huge ppl gathered for the rosery, so many ppl got to know you in your 5 & 1/2 mths of life, you got so many places, you really lived your life to the fullest. Abigail is gonna miss you terribly, she gave you losts of hugs n kisses, she just expects you to wake up, as do we all. We laid you in your moses basket and put you inbetween us for the night. It was so nice having you so close to us. Both your dad and i managed sleep tonight, think coz u were with us in body and mind.