4 August 2017 – A year of being Mum.

 

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Happy Birthday sweet Fionn

The last time I wrote I was embarking on motherhood to our new born, Fionn. He arrived peacefully into the world, through a home birth, on 4th August 2016.  A sweet boy from the outset and continues to be so. One year on, this blog celebrates the gift he has been in our life after Oisin’s death.facebook_1501879377585 (1)

A year of being mum

Ram Dass once said, “if you think you’re so enlightened, go and spend a week with your parents.”  Similarly, I think, go and spend time with your kids!  See what you can learn about yourself.

Staying at home with Cillian and Fionn for the last year has been my greatest and most powerful meditation by far. It is an experience of learning to truly LOVE and SERVE. A lesson in how to truly BE in every moment and SURRENDER to every moment. It is a lesson in SELF awareness. Oisin, Cillian and Fionn are my ultimate teachers.  My Gurus!! They are like a MIRROR, reflecting all that  I struggle to tolerate within myself. So much to learn when we listen beyond the behaviour. When we tune in to what a child is trying to communicate. Communicate in all their unique and often misunderstood ways. Through hitting. Through screaming. Through showing off. Through phobias. Through play. Through the way they are with others. Through how they treat their belongings. Through their sleep disturbances and toilet behaviour. So many ways they try and tell us…. if we have enough clarity in ourselves to SEE and to LISTEN. If we have enough patience. If we have enough  self love. If we don’t take their actions personally. If we can control our need to be in charge. If we can silence our embarrassment and feeling constantly judged. If we can silence our own upbringing and our own patterns of behaviour. Oh its a tough gig!!! All on little sleep. Frazzled. Demented. Brain dead. And.     GRIEVING.   Yes.   A tough gig.

Okay so yes I have to rise to all this whilst also grieving Oisin. Others have to rise to all of this with some other kind of suffering, another loss of some kind. We are not alone yet we carry these past things around so silently.  I have learned to be thankful for these experiences. We can use them. We can use them to learn and grow and become AWARE. If I struggle to see my children clearly, it is simply my own junk muddying the view. I’m a third time mum who has gone through a life changing experience. I don’t worry that my child shares a bed with me. I don’t worry that he still wakes multiple times at night. I don’t worry that he doesn’t take each nap diligently in his cot. Okay I am sleep deprived and yes I still do the whole anxious google thing (is he normal, ah yes, look there are loads of mothers posting the same, oh yes now I feel better again and I’ll just ignore those other sites that tell me I am doing it all wrong). I don’t sweat these small things. They are small. I have perspective on what is a small thing and what is a big thing. LOVE. TOUCH. SAFETY. CONTAINMENT. TO BE SEEN and HEARD FULLY.  These are the essential ingredients for kids. Not whether they are sleeping through the night yet. They will come to sleep and develop the ability to self sooth once they have had the essential basics. Fionn is ever changing. How little time we have. How wonderful each moment is when Fionn snuggles up tight and tucks his head in close. How wonderful when I see his little head pop up and look at me to see if I’m awake each morning. The smile when he sees my eyes open. Wow what a smile he has! Treasured moments.1496608661793

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Summer with the kids

A pleasure so far. Flying by! Enjoying time with the kids before I head back to work in September. Spent time in the UK catching up with family. They all live close so Cilly got a good dose of grandparent time, cousin time and sleep overs. I even braved flying alone with the kids as Barry headed down to a conference in London and I returned to Ireland.

As always, Oisin was never far. As rare as Oisin’s type of brain tumour was (DIPG), our visit to Leeds was a chance to meet up with a family living near to my parents, whose daughter also died of DIPG the same year as Oisin. The family own a thriving Italian restaurant, Casa Mia. We met with the father, a dynamic business man who is putting his business skills to use within the DIPG research field (see their web page for more.) We spoke at length about the different treatments and research funding. We mentioned our involvement in Brain Tumour Ireland. Barry has had a particular contribution in terms of where to focus research efforts. I am more drawn to understanding what it is to be human, for us all to contemplate end of life and what that means to the human life we have.

As devastating as it was, witnessing Oisin’s death was a huge honour. I was utterly blown away by his death process, his grace and his dignity. It felt like we were in the presence of divinity when we were with him in those final days. As the human body slowly shut down, remarkably, something else in him became more and more free. I never saw anyone shine so bright, or move so many people. It really was the most beautiful, profound experience of my life. I will be forever changed by what I witnessed. Oisin’s end of life has inspired me to be that light now – why wait until we are all at the end of our lives to shine like he did?

As I write these words I bring to mind my dear friend whose mother was recently diagnosed with Motor Neuron Disease. I have known this woman my whole life and I visited her whilst back in Leeds. As with Oisin, I was so very honoured to be present with her in that moment. To bring her flowers. To sit with her in her garden. To share in the beautiful sunshine that visited us that day. To converse with her and be with with her family. It was full of emotion and I’m very grateful for that time with you all.

I bring to mind also my dear friends who I lived with in University, who recently lost their friend to a sudden brain hemorrhage.  I remember her. She is beautiful.  xxx

These huge human experiences are here for us all to stop in our tracks and notice. Notice life and how it really is one moment that dies into the next moment. No need to be more. No need to cling on. Just to be with the one moment as it comes and goes. To notice without judgement. We are all constantly dying and being re born as these moments come and go, if we allow ourselves to be so fluid. To be open and willing to be aware of the bits of us that get stuck and sticky in our mind and in our body. We can work on those bits from a place of awareness. When we do, it’s a whole lot easier than trying to swim around in them as if they were our only identity. They are not. You only need to see what I saw in Oisin to know what is true. Death. The end and the beginning.

 

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Is child loss easier to deal with when another child comes along?

People often wonder if having another child helps grief. They are always quick to say, “now I know it’s no replacement but…”  I don’t think it “helps” grief. It is a distraction. That doesn’t mean grief has been helped. Its a generally safe enough thing to say to someone who has just had another child after losing a child. Makes everyone feel better to add a little positive spin.

How does anyone really answer questions of what helps grief. Is grief something to be “helped?” Can it be helped? Grief is just here. It shows up and says, “hello. Here I am.” I feel it in me, tearing and tugging at my heart, bringing to me memories, shock, disbelief, horror, yearning, longing, anger, sadness, devastation. It’s a wave washing over, and then it returns to the flow that is now my life. Now part of my human being-ness in this life journey I am on. The only change is the awareness. Grief itself has not changed simply because Fionn is in my life. Fionn is here. Grief is here. That’s it.

Grief has kicked me when I have already been down. I have noticed that on my tired parent days, on my irritable parent days, on my “i’m a terrible parent and my child is out of control and going to end up with some diagnosed condition because of my inability to manage him” parenting days, grief will come along and go “yeah and you also have a dead child.” Yup life seems pretty grim in those moments. It sucks the life force right out. I have been on my way to meet a a mums walking group and had to keep driving past them because I needed to keep crying. I felt so alone. Life seemed utterly awful and meaningless. I felt utterly useless as a parent. So I kept driving and berating myself that I couldn’t decide whether to finally go back and join the group or go home and curl up in a weeping ball. Eventually I pulled into the car park and joined up with the group. At some point along the way I admitted that I was struggling that morning, and the ladies listened without judgement. It opened up conversation. Then others talked about various losses in their own life.  It was great to take the walk and be connected with nature and with each other. Then the grief was a tiny bit easier to be with that day and I got through. Some days, even weeks, can be like that. Just as there are other days and weeks where it is not so strong and I can connect deeply with the Oisin who is around me now.

The one constant is that Oisin is always around. He is always in awareness. He moves through my interactions. He deepens the way we relate to each other. My heart can fill with love and joy as much as it can fill with grief. It is helpful to notice this big wide space within the heart that can hold grief, love, joy, anger, sadness and more. The beautiful vast open heart need not be closed and shut down by any one particular emotion.IMG_7778

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Coming into Butterfly Beingness

September is coming up yet again. It is the start of many Oisin related dates, beginning with 30th September, the 3rd anniversary of Oisin’s diagnosis. It will be Cillian’s 5th birthday and he will be starting his new primary school. I will be returning to work and have a few ideas for integrating the experiences and teaching of the last two years into some kind of personal venture. Fionn will be spending two and a half days each week with our lovely new child minder.  At least our new house is all settled into and working out well. A little stability to support the transitions ahead.

Meets ups with Barretstown

One tremendous and generous support in our lives that deserves another mention is Barretstown.  We attended three camps and bonded well with other families so much so that we have continued to meet up. We all spent a really lovely day together in Castletown House in Celbridge, Co. Kildare, and plan to have another meet soon. There will be a Barretstown reunion camp in a couple of years. Who else out in Castletown House that day would ever have guessed by looking at us the thing that we all shared in common You never really know by looking at someone what is going on inside.

Celebrating the day facebook_1501879351724

So happy birthday dear Fionn! A lovely day had by all. It was Cillian’s last day of “star camp” and today he thoroughly enjoyed his time up on stage dancing and singing in the end of week show. His new school happen to be quite into their drama so it will be a great fit for Cilly. I’ve no worries about Cilly going to big school. He is just so ready. What a happy and confident boy he is becoming. It’s lovely to see him growing and flourishing throughout all that he has been through. facebook_1501879324554

So after Cilly’s summer camp show, we went for a birthday meal at one of our favourite restaurants that looks out onto Myrtleville Bay. Then we headed to the beach for a little run around and Fionn had a great laugh being buried waist high in the sand by his daddy!!!  We returned home for a big chocolate cake and a skype with all the grandparents. We lit a candle and sang happy birthday.

I reflect on Oisin’s first birthday. It was such a huge affair with him being our first born. We had the biggest cake done up and personalised for him. Our house was full of all of his friends. He had so many friends. Children were drawn to him like a magnet he was such a gentle and fun loving boy. Looking back it seemed fitting that he had such a big party. Little did we know it was going to be one of only three and needed to pack it all in.

As you may know by now, Oisin was a humongous fan of the film Cars with Lightning McQueen.  When he was ill, one of his “let’s make every day beautiful” gifts was to open up the Disney store in Dublin. Oisin was told during that visit that a Cars 3 film was being made. He was so excited about seeing it. Sadly the film came too late for Oisin but this weekend Barry, Cilly and I will be watching it.  I’m quite sure Oisin will be with us through every moment. In many ways the film is full of parallels with Oisin and his journey. That’s what we see in it anyway, and there couldn’t be a more apt main message for us than in the Cars 3 promotional trailer.

“You can’t turn the clock back, but you can wind it up again.”

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17th August 2016 – Fionn

I wrote this blog almost as soon as Fionn arrived into the world. It remained incomplete until now, and finally I have some time to write some more now that Fionn has some longer stretches of sleep. Our two wonderful boys are all tucked up in bed. Our angel, of course, remains as radiant as ever; fluttering his wings all around, reaching out and touching people in the most extraordinary ways.

Fionn’s journey into the world received_10157230929905721

I have noticed many parallels between Fionn’s journey to us and Oisin’s departing from us in the great cycle of birth and death (or for me it is birth, life, death and rebirth.) In previous blog posts, I wrote about some experiences I had leading up to Oisin’s death. In particular I had a meditation experience where I became aware of a monk, and then a circle of them around Oisin’s bed. They seemed to be there for Oisin as a guide to help him transition. Well similarly, I had a strong meditation experience just days before Fionn arrived. I was doing a 40 day Sadhana  (yoga practice) “removing fear of the future” and the experience was so full of energy and imagery it seemed as if it was clearing something in me so that Fionn could move into the world. Sure enough he came along just a few days later, just in the same way Oisin seemed ready to leave us a few days after I saw those monks. Contractions began at exactly 40 weeks. 40 day Sadhana. 40 week old baby!! A special number indeed.

We planned a home birth from the outset. It seemed to fit us and I needed the care and sensitivity of a personal midwife to be with me on this journey. Here I notice another parallel with the death journey. In both birth and death, we were blessed with a guide,  a loving and wise motherly energy that walked with us and offered strength and knowledge. Tess, the palliative care nurse,  was this loving and wise energy as we journeyed towards Oisin’s death. Ellmarie was the loving and wise energy for us as we journeyed with Fionn towards his birth. As the month’s rolled on, any fear around home birthing left me. I trusted my body, I trusted all I had been through to this point and the birthing process was beautiful in the same beautiful agony that I described the death process with dear Oisin. It was dignified. It was graceful. Oisin was very present with us. We had his photo around the birthing space and we burned Frankincense just as we did when Oisin was in the “big bed”in Ballymore. We played music. Barry thinks I might have delivered Fionn to Mirabei Ceiba’s “Sa Ta Na Ma.” (the cycle of birth, life, death and rebirth). I have no idea of course what I delivered Fionn to, but as he journeyed into the world through the dark tunnel of the birth canal, I was holding tightly to Barry for the final push! Throughout, Cilly was sound asleep in bed, and delighted to awaken to this wonderful new little brother that had finally arrived in our family. It had very much been Cilly’s wish to “grow another”

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He came into the world very quietly. A very sweet and gentle thing. His eyes. Oh how his eyes can smile and speak to you! They sparkle and shine. They seem to speak of such wonder at the world he has arrived into.  Now at 10 weeks he smiles, he babbles, he flaps his arms around, trying hard to communicate everything he wants to tell you. He has so much to say already!

My other boys were born early. Oisin was 5 weeks premature and Cilly was 3 weeks early. Then here comes Fionn, breaking all records on the Wilton side of the family. My sister and mother had early babies. He is a big boy too. Already in 3-6 month clothes since about 7 weeks old!!  Yup Fionn is quite the individual and we feel very blessed that I could have another child to bring into our family.

Cilly is delighted. I can see already a wonderful bond forming between the two of them. The way Fionn smiles and smiles at Cilly. They have started sticking out their tongues at each other, and the other day Cilly took it upon himself to gently rock Fionn to sleep in his bouncy seat.dsc_0741received_10154545466128245

 

Grief

Ah yes grief. It’s still around, as present as ever. Behind the scenes of all that we do. The desperate sadness and heart ache of Oisin’s death seems as strong as ever. Still so hard to believe, so hard to make any sense of what happened. The trauma of the whole experience remains, and as time goes on it seems as though the trauma is growing within us, and has started to speak already, in various emotional and physical ways.  For me it has been helpful to remain aware of how trauma can “speak” and I try to stay open and listen, to keep working it through the body so it doesn’t get stuck and transformed into something else. When trauma, which is in all of us, starts to manifest in the body or mind I see it as an opportunity for healing. There are any number of layers we can go to when it comes to healing, from popping a pill, to talking therapies, to creative therapies, to body based work, to energy work to spiritual work.

img-20161002-wa0004Deep healing at the level of the original trauma and deeper still at the level of the soul, no two ways about it, involves moving through the hardest most painful emotions (like shame, grief, guilt. rage, fear). There is a readiness. It feels frightening and threatening to the ego. Like a death in itself. A final letting go of habits held onto for so long. Patterns of behaviour once used for surviving some pain that no longer serves us. Patterns that now limit us. Fear is the main barrier to be worked through before the pain can finally be looked at clearly and released. There are therapies that can help, and I have been so impressed with them I have trained in them myself. That’s why there is a help and
support section in this blog. We do not live this life to be limited. We are not  here alone.

I’ve had many tearful moments since the arrival of Fionn, as I long for Oisin, in human form,  to be part of this amazing new life. He shares it in spirit, but there are many moments when that just isn’t enough. We miss him…People say a new baby helps. Perhaps. In a way. We’re distracted into the whirlwind of a newborn baby. It’s made up the numbers again. Cilly has a brother back again. It also leaves a bitterness. Didn’t we already have it all. Two beautiful boys so close in age? Now here I am starting all over again. Now Cilly still has to wait for the best friend he once had, but Fionn will have a different relationship with Cilly. He will be 4 years younger. That’s not good or bad. Just different. It wasn’t in the original plan. I still feel utterly heart broken for all that Cilly has had to go through and that he should have to “grow” a new best friend. I know. Yes. Where is my gratitude that I could have another?  Others were not so fortunate. This bitterness. I can only be honest and admit it is there. We are as we are and I’m working on it.  Always trying to move through the pain of awareness.

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A month after Fionn’s arrival there came September, a time for new beginnings. The leaves began to fall from the trees once more, scattering their golden carpet all around, for the children to kick playfully as they return again to school. For us, it is the beginning of yet another cycle of reliving. From the 30th September we relive, like a parallel universe, all that happened 2 years ago. It’s not a conscious process. More a shift in energy. An awareness that we have entered into some kind of murky fog. Perhaps, in time, the acute sting of those memories may loosen like the autumn leaves and we can sit and look at the colour and texture of the memories as we do the leaves on the ground.

A new house

One event to lighten the way ahead will be the move into the new house. It hasn’t happened yet and it’s hard to be in the moment with it all. I’m very very much looking forward to it!

Another new baby

Another positive is our very first girl to arrive into the family, after 8 boys in a row! Welcome dear little Kitty, we are all so thrilled for you and you have arrived into the arms of beautiful parents, Niall and Izzy and your fab big brothers. Many blessings to you xxx

Barretstown Bereavement Camp

So that brings us up to October and the weekend just gone. Like last time, Barretstown was another really valuable experience and we are so grateful it is there for us. I may not know the other parents too well but this one huge experience connects us deeply. For me it is a space to be. Cilly is well looked after and occupied. Meals and washing up is all catered for. The staff are so nurturing and so much fun to be around. It frees us up and makes room for reflection within a community of people who get it. The grounds are very special, full of golden, autumnal trees and sun lit walks.  Beautiful rural views and a shimmering lake (upon which I had great fun canoeing!) The sun and moon were incredible during our stay there. So bright and full.  The staff told us it had never once rained on ceremony night, when the families gather by the lake to celebrate the life of their loved ones. img-20161015-wa0000
Our celebration of life ceremony was with candles, which we placed on a raft and watched them float away down the lake. Last time we released balloons – all but one. Cilly held onto his, but this time  he placed his candle on the raft and allowed it to leave. We stood around a fire and listened silently to music, whilst the children worked in the earth, making sand sculptures. Behind us shone the most spectacular full moon. Barretstown has become my sanctuary. Rather like Yoga Borgo was and still is in my heart. I feel we are safe there. We are light.  It means so much to be looked after, nourished and nurtured. Couldn’t we all do with this?  We need these nourishing spaces in our busy modern lives. img-20161015-wa0001

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28 April 2016 – Barretstown Bereavement Camp

Walking the path

well worn pathI have been transforming at such a rate in the last year that my life is wavering away from a path that I had been walking. It has brought to me a time of unrest and also much creativity. I am noticing that new life is coming my way in different forms. The new life that our new baby will bring is clear. Then there is a move to our new house coming up in September. But there is another new life brewing and it is my path, road, destiny, which has been pointing itself out to me very clearly of late. I am grateful that I can remain in a middle way place for now, just being with this growing life within me, looking forward to having time out of work, time to see how things work through. I surrender and trust. I can only live in this moment, no matter how it feels. Every moment is a death and rebirth within itself.

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Barretstown is located in the same village as Barry’s parents, in Ballymore Eustace, Co. Kildare. It offers medically supported residential and day camps for children and their families living with cancer or serious illness. (https://www.barretstown.org/). It also offers a bereavement camp, of which we have just attended our first of three.

Overall, a valuable experience. Cilly was well looked after by the staff. Children generally have two members of staff per child to look after them and take them to activities. The staff were called “Caras” which is Irish for “friends.” They couldn’t have done more for us. It was easy for us to leave Cilly with the Caras to go off to his fun activities. It gave us time to connect with other parents in the adult groups.

Many activities were not directly related to bereavement but created a chance to try something new (like archery or climbing) and get chatting to other parents in a non pressured way. There was a chance to participate in mindfulness meditation each morning. There was a time each day that the parents would gather as a group with a facilitator and talk about their experiences. Every evening there was a reflection, a ceremonial  lighting of candles for the children we have lost and allowing a silent space as a piece of music played. On the last night there was a celebration of life event and we released balloons by the lake on Barretstown’s very beautiful grounds. We listened to some words from the facilitator and music was played. We stood in silence as the balloons floated away. An emotional ceremony. Dear Cilly was the only one who decided not to let his balloon go and then his Cara tied it around his wrist. He decided that night to suspend the balloon above his bed and if he woke in the night he would pull the string of the balloon to help him to go back to sleep.

During our time being part of the adult groups, I noticed that whilst we had all arrived at the same place, there were differences in how we were standing [or trying to stand] after the fall. Some carried anger, some carried guilt, some felt isolated and unable to talk with others about their loss, some were able to see some of the ways their lives had been enriched from their experience. Barry and I connected with parents who were in a similar emotional space as us.

Some reflections on anger                                        anger.jpg

I could feel angry that we got the death sentence, that we got the rarest and most fatal type of brain tumour, that we never had a fighting chance or hope from the start and that all we had was four months.

I could constantly play over and over in my head the “if onlys”, “what ifs” and carry around guilt over the huge decisions we had to make on behalf of our little boy and his life.

I could feel angry every time someone remained silent to me, said the wrong words or asked an ignorant question. I’ve had them all.

I could retreat into silence and feel like I should be moving on,  should no longer talk about him for fear I will be judged as not getting over him,  should pack his things in a box,  should not cry or talk about him because of a belief it makes others feel awkward…but I don’t.

For me, anger is our pain and fear turned outwards. A way of trying to rid ourselves of an intolerable emotion. I try and connect with what lies behind anger. I notice heart break, pain, sadness, fear and those feelings rise up in me often. In any moment, tears of sadness can well up as I connect with the loss of what once was. In any moment the horror of a traumatic memory from that time can sting my heart, make a shudder all through my body, bring a sinking feeling in my stomach. Yet along with this whole cluster of difficult emotions and bodily sensations I also notice gratitude and an almighty love.

I’m grateful that he lived each day beautifully. I’m grateful he died between his mum and dad during his sleep. I’m grateful that his pain was managed at home and he remained as comfortable as possible. I’m grateful that we could take him out in the beautiful sunshine on his last days,  that he was surrounded by all those he dearly loved, that we could feel his body shake with laughter on his very final day. I’m grateful for those who held our hands along the way.

Whatever the circumstance. However we journeyed to this point. It’s all a twisted case of swings and round abouts, the bitter sweet, the “fierce grace.”I live with the pain of him not being here.  I live with the wonder of what he continues to bring me.  In the end, we all stood there by the lake in Barretstown, united in our suffering, each one of us left in silence to all that was inside, watching our balloons slowly float away.

I don’t find it difficult to talk about our grief and about what happened. I think talking gives others an idea of how to be, like a permission to acknowledge this grief. Grief is a universal concept. Everyone can connect with grief and loss in some way. If others remain silent, then I know it is triggering something personal to them. Not me. Some unspoken struggle inside. And that’s okay too. We all go on our own journey. We can all have compassion.

Middle ground                           desert.jpg

So here I am in a strange middle ground. This middle ground is different to the still centre I have come to know so well in the last year. This middle ground is like a desert with no way back and reluctance to move forward, as if moving forward is to acknowledge the loss and slowly erase my beautiful human boy. Time moves along anyway, I have no control over that, and a profound transformation is happening as if I were in some kind of cocoon. It looks like I’m living in the moment constantly, and I am, and he is with me in this moment. But it doesn’t feel like a choice. It feels like literally all I can do, because to do any more is too much.

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15 February – When I Cannot Hug You On Your Birthday

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Oisin, born 35 wks, 15 Feb 2011. Arrived Early. Departed early.

When I Cannot Hug You On Your Birthday

There are moments that can last for days.

Where I move into the darkness.

Where I can barely function in daily life.

Where my heart aches for you to be with me.

Where life starts to take on a grey two dimensional existence,

and the pain is the only place that feels real.

I move into this darkness with an open heart.

I do so out of choice.

Because at some point along the way,

I find you.

I find love.

I find connection.

I find oneness.

I find who I really am, and who I really am is who you really are.

Polarity leaves.

Boundaries leave.

Duality leaves.

I am still.

Peace.

Light.

I cannot control this loss.

I have no power to bring you back.

I cannot have you in my arms and see you turn another year older today.

I cannot run from what life has given me to carry.

But I can choose to find where you are now.

To find you within me.

I find you always in the surrender to what is.

The surrender to all I cannot change.

Happy Birthday, dear, sweet, wise, radiant Oisin.  On your 5th birthday, we find you in our hearts, whether in pain or in joy. You are there. A timeless butterfly boy, dancing all around us. Xxxx

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Oisin’s 1st Birthday

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23rd Jan, 2016 – Lasts and Firsts

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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….

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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.

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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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30 Nov 2015 – Summing it up

WP_20151122_009Barry sent me this photo he took of Cilly and I during a weekend walk in our local area. He wrote on his message to me “this sums up things for me these days.” I knew in that moment it would be the next blog. I wrote back to him, “Thank you.  It’s like we are, photographer, mother, child, all watching the pure white beautiful swan as a being always there but no longer in human form.”  The buggy sits empty. The child and mother hold each other closely. The swan is among many ducks. They all drift by, out of reach, in their water home. The swan, a snowy white beauty that is present yet leaving us to be in our stillness.

I have had a lot of creative energy, angry energy and grief lately. Triggered by a chest infection that is doing the rounds as this year’s illness. It made me stop. I had to rest. I had to be still. It is when stopping happens that the body surrenders to all of the emotions within. So sure enough there was plenty that came up! I started reflecting on my work and the role I want to play in my job as a psychologist, reflecting on how we approach suffering in our health care system, listening to what I have heard a lot of people in distress (me included) say about healing, then of course all of the world events and what they are trying to teach us all…

No one can heal the world but we all play a part on the big stage of life. We can easily divide us and them, me and you, we can put a boundary there to make us feel more comfortable with all that goes on around us. For me, that isn’t healing. That is dissociating. We heal from the heart. We heal through love. We heal when we feel part of something meaningful. We heal when we feel meaningful. We heal when we connect to our own truth and when we live by that truth. We heal when we completely surrender to what is. It is amazing what I have found within this deep pain.

So I continue to surrender. Christmas is coming. There is no getting away from how utterly heart wrenching that feels right now. I never used to get how Christmas was a difficult time of year for many. My only associations with Christmas up until this year have been of cards, presents, mad frenzied shopping and not having a clue what to get people as Christmas day creeps up way too quickly, of rather too much mulled wine, singing cheesy but nice carols, watching really bad TV, decorating trees with tack, mountains of food, family gatherings, weather conditions, planes over to England, generally being busy, catching up with friends and the magic of seeing our two boys meet Santa, open their gifts and bring that special magic to Christmas that only children can.

In a heart beat, all that I knew to be Christmas fell apart, like so many other things, the day I knew our son was going to die. I stared into the matrix that day and the bubble of life as I knew it burst. Now I know the experiences so many people have at this time of year. The person who will be freezing and begging on the street, those living in war zones constantly afraid of their lives, those forced to live as refugees coping with trauma after trauma, those who live in starvation and poverty, those who are alone, those who lost someone they dearly loved. All different experiences of the same one thing: suffering. This time of year intensifies the pain. I feel it in every part of me. OISIN WILL NOT BE HERE. We go through it without him. What is Christmas without our boy. I remember the delight on his face at every Hot Wheels car he opened, at every Lightning McQueen car he opened, his delight at seeing Santa, the fun of decorating the tree. I will never see that incredible look on his face ever again. There will be one less chair at the table. One less the whole time. With every passing moment.

Then after Christmas, it is the anniversary of his death. Then after the anniversary of his death it is his 5th birthday. The dates come one after the other. I have no idea what strength will carry us through. Well actually I do. LOVE. And TRUST that we will just get through. What does “getting through” even mean. Different things to different people. For some it is managing to get out of bed and see some of the day. For some it is downing 15 pints, putting on a silly hat, wearing a smile and crumbling into darkness for a few days before the mask goes on again. That’s it. No magic formula. The bottom line is you just have to go through the pain, over and over and over again.

What do I think gets a person through it? PERMISSION. SELF LOVE. ACCEPTANCE. Permission to be as you are. To Love yourself enough to know when to say no to others and to compassionately be with your experience. Acceptance of feeling whatever thought or feeling you feel – whether it is a dark thought, a feeling of rage and fury, a feeling of terror, a deep and hollow sadness or elated joy and peace. They belong to you. They are yours. Own them. Be with them and give them compassion. Accept without any GUILT or feeling that you SHOULDN’T feel or think this way – that’s when you run into trouble. All these secondary feelings are the guys to toss out! Mr GUILT and Little Miss SHOULD and Mrs SHAME and Mr HOW DARE YOU THINK SUCH  A THING and Ms JUST PICK YOURSELF UP AND GET OVER YOURSELF. Get them out the door and get back to your PERMISSION to feel whatever way you want to – feelings and thoughts in themselves do not harm. You can be with them in the most silent and still ways. You can be with them just in your breath, in your tears, in your creativity. But these secondary guys – they can cause trouble. And they are usually the voices of others, voices of the past, voices of a culture. They are NOT YOURS. Let them out. You have enough on with this one single experience that you are just trying to be with.  Just trying to “get through.” Okay so there’s my rant and on we go….

In anticipation of a very difficult Christmas ahead, Barry, Cilly and I are travelling to Norway. We have some friends there who we are in gratitude to, for offering us their home and kindness. We will have an overnight stay in Roros, a beautiful mountain village where we can do some fun stuff like dog sledding, and hang out with Santa’s reindeer. More than anything, I just want Cilly to feel some Christmas magic glow in his beautiful brave heart. I want it for us all, of course, but so dearly want it for him as he goes through Christmas without his brother.

I have such a beautiful and sad memory of the day it snowed in Ballymore-Eustace last year. Oisin wasn’t walking. He was in Daddy’s arms and I was standing with them in the conservatory. We were watching Cilly, Granny and Uncle Bren outside. Then they rolled snow balls and started throwing them in the window to us for Oisin. Barry helped Oisin to throw the snow balls back out. Somehow we managed to make a snow ball fight and form a beautiful moment between us all. One I will remember. One that made me seek out a snowy place to throw snow balls again this year – and feel the breeze of Oisin on our faces, feel his energy in our throws, hear his laughter in the bitter Nordic wind.

We are in deep gratitude to all of our friends and family who have supported us through this year. Even when I have needed to be alone, I have always felt you with me. We are making plans to combine our donated funds with the hard working, lovely family of people who set up the organisation, Brain Tumour Ireland . For those of you who are friends on facebook you may have seen the fund raising 10k run/5k walk they held in Dublin on Nov. 1st. We hope to continue our connection to this group, and give our inputs into where to focus the funds. Thank you again to all of you who donated and have done various fund raising initiatives.

Peace to you all this Christmas. Hold your coldest experiences with the warmest compassion. Permission. Self Love. Acceptance.

Sheila xxx

 

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Wednesday 4 November – Plushy time again!

Today Cilly wanted to make a dragon fly “plushy”. Here it is!

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Then later this evening I had a look at what we were doing this time last year. Strangely enough we were also making plushy’s with Maeve, who taught us how to do them!! It was our first trip back to Cork since Oisin was diagnosed. Here is an exerpt..

“Today we spent the day by the sea at our very favourite places, Myrtleville  and Crosshaven. The sun glistened and the boys kicked off the shoes and socks and seemed to run so freely and happily in the sand and water. We met up with Suzanne for brunch in Crosshaven and then called up to Maeve’s house who was there with the girls. Oisin and Cilly loved seeing Albert again, the tortoise with attitude, and I think Maeve and I had the most fun of everyone with the “plushy” making!  Boys went to bed very early after their day, but not before enjoying the treats Orla left for them. We had our final  visitors, Jo and Philip, stop by and now the hatches are firmly battened down on another emotional, beautiful, tiring day. Words can’t always accurately describe the personal impact of our experiences. We simply continue on, like riding the ocean waves, and its all we can do for now. Good night all. xxx

It was a sad day gain today. I noticed how the disbelief of having our incredible little boy gone from this world, can still rise from within like a volcano.  xxx

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