23rd Jan, 2016 – Lasts and Firsts


Oisin, Cilly and their Grandparents, Christmas 2014

Excerpt from Christmas 2014, Oisin’s last Christmas:-

“We are so grateful to have made it to Christmas with Oisin. He can still talk and show his humour. He can still play with his toys. But Christmas does intensify the pain of our journey. We know this will almost certainly be our last with Oisin.  On Christmas Eve, Msgnr. Wilson phoned us to kindly invite Oisin to light the Christmas candle in mass. My Christmas eve was spent in deep pain, as I wondered how I would bare the next day being so full of “lasts.” The last Christmas with my beautiful boy, the last Christmas mass with him, the last time we see him open his gifts with Cillly….it makes for a difficult read, I know. Still, I’m not here to paint it any other way. I hope it gives strength to others to say that this pain is okay. It is here and I have found it is important to keep a space and a tenderness towards this pain so deep in my heart. So on Christmas Eve I stayed at home whilst the family went to the traditional Great Granny Boland’s Christmas Eve Party (still hosting at 96 years of age, inspirational granny.)  It strengthened me so much to make that time for myself to be sad. Come Christmas day we were all able to enjoy the children delighting in their presents, pull crackers, read the bad jokes and be fully present as Oisin was carried by his daddy to light the last candle of Christmas.”  

2014 was our last Christmas with Oisin, our human boy. This year was our first without him, our butterfly boy. Norway helped. We are in gratitude to our Norwegian friends who put so much effort into making the time as happy as it could be for us. You did a stellar job! Santa visited. There was a mountain of presents (how did we get that cuddly big moose in our luggage??!). The snow we wished for, came for Cilly.  We spent time in the mountain village of Roros, trotting through the silent, snowy streets on a horse driven, torch lit carriage.  We ate extremely well! We joined the Trondheim congregation at the Nidarosdomen Cathedral, to listen to the Choir on Christmas day. So all in all a good time had. As good as it could be.

Arriving back into Ballymore-Eustace was a very different experience. I realised how much my emotions had been “propped up” by our retreat to Norway. My body, my energy, my mood, my everything seemed to tumble into deep sadness, despair, disbelief. The reality of Christmas without Oisin; and the painful memories of the previous year, came flooding over me like a tsunami. I wept and I stayed in bed for much of the days there – until we decided to return to Cork earlier than planned. We missed a family wedding. The decorations and tree were pulled down. Seeing my external world removed of all traces of Christmas brought back some stability and normality for me. Then finally the rest of the country decided it was time to put a lid on Christmas too. A sigh of relief. New Year’s Eve came and went. Actually, I did mark the occasion with a Mul Mantra meditation in union with my friends, Brigitta and Fabian the “Amrit Satya’s” who were doing an all night Mul Mantra meditation (no, I didn’t do the whole night!) Talk about fire works on New Year’s Eve – you guys must have set the world alight. xxx. Then it was back to work. Couldn’t be happier to be back in the door of my familiar work place. Most of my psychology sessions throughout January have been helping others to process their own struggles through Christmas. One year down.

January 18th – 1st Anniversary of Oisin’s death

After Christmas, moving through Oisin’s anniversary was relatively okay for me. I was a little uncertain about how to mark it. Irish tradition has an anniversary mass, so I went with that and off we headed back to Ballymore-Eustace. For me it was about being with a community who helped us so much during those four months. Who knows, perhaps we will find an “us” way of marking this day in the future, but for the first year it felt so natural to be around the people who had been with us throughout Oisin’s illness, back within a community that remain closely connected by their Church and faith. The house was busy with preparations when we arrived. It was a welcome distraction for us all. An impressive spread of food was laid out for friends and family to join us in the home after the Saturday evening mass, lead by dear Msgr. Wilson, who was so very fond of Oisin. The community, our Dun Laoghaire friends, and the extended family, kept us well held and looked after throughout the whole weekend. Your support always means so much to us and we thank you.

Lighting Candles for Oisin

In the UK and in Ireland, friends and family marked Oisin’s anniversary in their own special ways. Candles were lit. Memories were shared. Children drew pictures. Poems were created….


By Ella, Oisin’s dear friend since birth

Intricate Pattern of Love’s Weaving
A year’s passed but they’re still grieving
the loss of their beloved boy
An empty chair, an empty bed
Yet your presence is deeply felt
In every part of every room
Butterfly boy, so aptly named
You flew above this earthly domain
and now you dwell in angels arms
Exultant in majestic grace
You beckon us to seek the truth
That there is no divide, just love absolute.
By Mags


We felt you all with us, burning your lights for Oisin. Peace and love to you all. xxx

Supporting Brain Tumour Ireland

Deserving particular mention were members of Brain Tumour Ireland, who attended the anniversary mass and reception. A few months ago, we met with the family who set up Brain Tumour Ireland, and discussed pooling our funds together. It was a very fitting occasion to invite them to the anniversary mass and present them with a cheque for 5,000 Euros. The presentation pictures will be published in local newspapers to raise awareness of their good work. For those of you following this blog, you will know that the money we received during Oisin’s illness, was put towards the big effort we all made in “making every day beautiful for Oisin” and to the many charities that helped us so much during our final weeks with him. To help us decide on where to put our remaining funds, we spent time investigating various research projects into DIPG (the type of tumour Oisin had).  Brain Tumour Ireland have been very happy to have Barry on board to consult with, given Barry’s research background. The research we have collectively chosen will fund a biobank facility  of human brain tumour biopsies, which will set the foundation for Irish researchers to investigate and collaborate with international researchers. Also deserving a mention are the UK based Lyla Nsouli foundation and Abbie’s Army, which specifically target DIPG research and have received donations from our friends and family in the UK. We hope the research, both in Ireland and overseas, will lead to a better understanding and ultimately a cure for this rare and devastating disease.

A LINK TO BRAIN TUMOUR IRELAND IS NOW ON THE “DONATIONS” PAGE OF THIS BLOG. Other charities we have supported will also be listed. 

From the bottom of our hearts, THANK YOU, to all of our friends and family for your fund raising efforts and generous donations.  We have plans to continue our partnership with Brain Tumour Ireland. I plan to get involved on the well being side of things, working with Brain Tumour Ireland on various events that will support those diagnosed with a brain tumour and those who are grieving their loss of a loved one. It seems to be no coincidence that I now find myself in a state of preparation to bring what I have learned to others – to bring my experience of Oisin’s profound transition, my journey through grief and my professional background, together in a way that can offer meaningful support to others. My dear, sweet Oisin, I have been truly guided through my own metamorphosis.

We all deserve a space to contemplate who we are, why we suffer, what our experiences might be saying to us, and how we can navigate through a broken heart so that the light may shine through it’s cracks.


Creative energy

I have felt a strong creative energy around me these last few months, thinking a lot about how to make that connection with our core being. This same creative energy became creation in itself, when I became pregnant just before Christmas. Twelve weeks on, we bring to you our new blossoming life….

.Baby Scan

Perhaps not so much a time of lasts and firsts, for when I look at it through a larger lens, our journey is simply one infinite cycle of Sa Ta Na Ma – Birth, Life, Death, Rebirth.

Sat Nam

(Oisin always used to say, “Hello, I’m Oisin. What’s your name.” His wisdom is in “Sat Nam,” two words we always chant to end our yoga practice. Translation: May Truth Be Your Identity. xxx)


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3 Responses to 23rd Jan, 2016 – Lasts and Firsts

  1. Esther Maher O'Keeffe. says:

    Hello Sheila,
    As you can see from the time that I am sending this e-mail: 02.31 I’m awake and decided to check my e-mails. The reason that I was not sleeping is because there is a lot going on in my head at the moment. When I got to your e-mail or blog, I knew that I would not be able to read it. My sincere apologies. I could not take on what I knew would be a lot of painful reading. I looked at the lovely pictures and scrolled down to the end of the page.

    Suddenly, my eyes were drawn to the word Rebirth, so I began to read from there on. I am now, as the song goes “On top of the world” a Party Piece of mine when I was going to Secondary School with my dear friend Una. I came to Ballymore Eustace in 1956 and now we are in 2016, Una was always the Mathematician, but I can just about work out that we are both looking at 60 years. My apologies as I diverse, but this is the most wonderful news that I could have read on a night when my head and heart was full of this dreadful Depression that I suffer. However, I am now going to close down this Laptop, make a nice cup of Tea and a plain biscuit. Damn, I could eat a full bar of Milka now, but its the early hrs of Thursday, and Thursday is the day that I head to the Post Office and meet Joan Burton. This was a great joke the first time that I said to my boys: ” I’m off now. I have an appointment with Joan”. Being nosey, and me always telling them my business, (New year Resolution is to keep a few things private) they asked “Who is Joan Mam? They were disgusted when I replied: Joan Burton. They suddenly worked out who I meant and were both annoyed to be caught out.

    To Barry and yourself I offer my deepest and sincerest Congratulations. Oisin is doing his little bit and no one noticed.


    Esther Maher O’Keeffe.


  2. Anne O'Donnell says:

    Sheila, I hope you and your little bean are doing ok. I have been unable to sleep tonight thinking of Oisin and then of you and of course your soon to arrive (if not already) little one. Though you do not know me I have followed your writings as my two boys are your two boys age and though I can never understand your pain, I hope my thoughts and prayers for you may offer some support. Sat nam
    Anne (the girl who birthed to Ong Namo) x


  3. Thank you anne. I plan to post a blog once birthed. Also hoping to birth to ong namo or whatever similarly energetic song will be on the play list at the time!!


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