Here is the sky from our window, as we arrive at Oisin’s 8th earthly birthday. The picture captures the airplane vapours, kissing in the beautiful sun lit sky. Oisin loves to dance in the sun on his special dates. He ensures we get treated to a superb sky. Thank you sweet boy. It helps us.
Vapour Trail “First you look so strong Then you fade away The sun will blind my eyes I love you anyway Thirsty for your smile I watch you for a while You are a vapour trail In a deep blue sky Tremble with a sigh Glitter in your eye You seem to come and go I never seem to know And all my time Is yours as much as mine We never have enough Time to show our love” Andy Bell
My friend and I are captured in the above picture, as a wave breaks over us. We are swimming buddies, along with a community of other swimmers who meet here at this beach. Very few wet suits in sight, but plenty of laughter and friendship. As with all of nature, the ocean is my therapist. I long to merge with it, and feel deeply privileged to take in the fullness of these human experiences.
Oisin and Ocean
I stride into the ocean with a hunger. Oisin, Ocean and I become one, merged into the vast energy of the waves. I scream from the cold sting of water, and know I am alive. I live on beyond you, sweet Oisin. When I scream, they think it’s from cold. Perhaps a little. But mostly I scream out the pain, releasing it from this grief filled body, and surrender it to the sea.
The school year is drawing to an end. Cillian’s first year of primary school is drawing to an end. He has grown and matured so much. He has learned so much. Cillian has a strong internal teacher. He seems to have such wisdom. For him to remain connected to what is inside, he needs sensitive teachers on the outside. Cillian’s first school teacher has been exactly that. He seems to have really understood each child and their needs. Classes seem to have been fun filled and confidence building. Each child was given a chance to shine and where help was needed it was noticed and responded to with support. I know I speak for the entire class when I say that we are all so grateful to him for the support he has given our children this year. Interestingly we have found a school that has also been affected by the death of a much loved colleague, a young teacher who died suddenly not long before Cillian started in the school. I know that some of the staff in the school have read this blog. We seem to share a collective sense of inspiration from these radiant beings who came into our lives, made an impact, and then left. Through us, their teachings live on.
I hold in mind another young man who came to our mental health team as a very promising and inspirational psychiatric registrar. Everyone who came in contact with him liked him. He had such a fresh approach and seemed to really understand people. Sadly he became ill with cancer and died recently. I hardly knew him but when I heard the news I was so shocked and sad. I felt an instant connection to his parents and what they must be going through. I went to his removal to say goodbye. To meet and shake the hands of two people who brought the most incredible young man into the world. I have no doubt that his colleagues have been inspired by him and would consider him as one of life’s teachers also.
Teachers have the ability to plant seeds that grow into gardens within a person’s being. I didn’t see it at the time but now it makes sense to me to say that Oisín came into the world a teacher. He left seeds of wisdom that move in me like mantras for living life. There is one teaching that still feels like it is waiting for me to understand it in all of its depth. Whenever I took a video of him, he would often look into the camera and say, “Hello! I’m Oisín. What’s your name?” then he’d throw himself back in fits of giggles. A while after his death I found a recording he must have taken himself somehow, and it was exactly the same message, “Hello! I’m Oisín. What’s your name” and the familiar giggling as he threw back his body. The words hit me at such a deep level. That’s when I first saw him as a teacher.
Oisin might be viewed as a spiritual teacher, although that doesn’t quite fit for me. I don’t have any particular label for him. I’m not sure how I really feel about the word spiritual. I just have a strong sense of a highly conscious being who has taught me and others so much. Some people go on retreats to be in the presence of a spiritual teacher. I chuckle at our Skype encounter with Ram Dass, who offered to have a session with us not long after Oisin’s death. I had no idea how well known he was as a spiritual teacher at the time. It’s as if these people come along the path at just the right time. Who knows! I’ve been invited to a few retreats by friends since Oisin’s death, but have been selective about which ones I attend. I’m drawn to things that connect us with the internal teacher. That’s why Kundalini yoga and I go together so well. It teaches a philosophy of the teacher being within. The intensive weeks of yoga teacher training connected me very deeply and powerfully to this internal wisdom we all have. At the beginning of every Kundalini Yoga practice, we always tune in to the internal teacher through the “Adi” mantra. The yoga teacher simply creates the space and energy for each student to come to their own awareness.
Experiencing Oisin’s death brought me into close connection with this internal teacher. I learned about grief, trauma and healing, just by opening to the experiences as they unfolded. I noticed that Oisin’s death naturally gave rise to the emotion of grief. I learned that it is a natural emotion that comes and goes, and attempts to “get over” grief seem as pointless as trying to “get over” angry or sad or happy. Why would I want to do that? They are just feelings and by allowing them a natural passage through us they may come and go without any particular judgement or distress. I also experienced trauma following Oisin’s death, which carries with it a very different quality to grief. The death of a loved one can be traumatic when it is someone we never really expected to die at that point in life. It gives rise to feelings of helplessness and having no choice. We had to go through all of these unplanned, unprepared for, out of control experiences. The trauma was in the moment of receiving the diagnosis that Oisin would not survive. The trauma was in the daily experience of witnessing him moving towards his last breath and his final heartbeat. The entry into silence after all the intensity of caring for him. The intensity of the funeral. All the energy of those moments can overwhelm the mind and body. It’s only noticed when the silence and regularity of life returns. It’s there, all trapped in the body. It has no words and yet it needs to speak. If ignored, it starts to speak for you, in not so nice ways. I have also noticed this as a clinical psychologist to so many hurt and damaged people that come for help. When it comes to healing from our past experiences, it is always the same. There is a story in every person that needs to be heard and acknowledged, for what happened. The story must be told from deep within the body, not from the intellect. The story needs to speak of what didn’t happen that needed to happen. Healing is in the responding to those needs, giving love and compassion to that part of the self that has been so wounded. Healing is moving forward and expanding into who we are and what we are here for. In this process, it seems to be empowering to be witnessed and gently guided by a trusted and compassionate other.
Yoga was one of my ways through the trauma of Oisin’s death, and has remained for me a strong and powerful teacher. I needed to be with my whole system. I needed to be in my body. There are no words for how this experience has impacted within me. Yoga was just waiting for me to use it for this purpose. It had already offered me so much as I walked through those 4 months with Oisín’s illness.
As time has moved on, I have met other “teachers” that have supported me. One lady, Canella Michelle Meyers, came as a gift from a beautiful friend. That seems to be how all of these teachers have come along, and it is with deep gratitude to the generosity and intuition of friends. Canella lives in Vancover, Canada, and she has ancestry from Cork, Ireland, where Barry and I have lived for the last 5 years. She also happens to share a passion for Kundalini Yoga! She has been interviewed on a podcast, click here, if anyone wants a slice of her beingness. I had a couple of sessions with her, and then she posted up a retreat she was offering in Aherlow Castle, Co. Tipperary. I didn’t go last year but this year I jumped with that BIG DELICIOUS Yes, which only the heart can do when it KNOWS something is for your highest self. Canella is this shining bright star, this essence of fun and joy, this truthful being, this mirror that reflects consciousness as it shows up in the moment. Her work is so nourishing, so present and experiential.
All of the people who attended the weekend were so healing to be around. It was like coming home to a home where everyone gets each other, where intentions are heart felt, where words are meaningful, where all the nonsense that goes on between humans has fallen away. The food was divine. I could literally taste the love in every bite!! Aherlow Castle itself has an energy to it that spoke so much of the retreat. A hidden gem. Still, silent, waiting for it’s visitors to come upon its vastness! The owners of the castle are two clinical psychologists who seemed so humble and grounded. I guess this sounds like one big plug but it’s well deserving. I feel deep gratitude for this wonderful experience.
Teachers. All of us. We all have something to teach. Quietly or loudly, clearly or subtly. In our grief. In our joy. It is ALL teaching. Consciousness shows up and teaches. We just need to open our hearts and listen. Recently, I too have become a teacher. I made the step at last into teaching Kundalini Yoga. I teach a small group in my home. So here I am. Little me doing something so small and yet feels BIG. I can only handle little baby steps at a time. The world seems such an overwhelming place. Yet each one of us can play a part. Each one of us is a teacher and can each start with our own self. Teaching self how to be with self. The true teachers are those who teach by giving a person the space to realise the teacher within. Nothing is expected in return. It is a delight enough to simply have been with this person, at this moment, in service to something collective between us all.
So here we are again. The third anniversary of Oisin’s death. Here I am again. Writing another blog. In some ways the third anniversary of Oisin’s death feels like the third year of life. I can’t define who I was before or the life I had before Oisin. It’s like Barry and I and the life we knew simply died at the click of a button. I remember the feeling of glass smashing all around us the moment that we were told Oisin would not survive. The glass rained down on everything that I knew myself to be and cut through it all. As painful as it is, this life feels REAL and TRUE. It’s like everything else was a bubble. It’s not really about being happy. I’m not sad either. LIVING to me means being in the acceptance of it all without much of a distinction between good or bad, happy or sad, right or wrong. The lines disappear and it’s all just one flow that comes and goes in moments. It is very natural, simple, ordinary and human. No filters in the way. No need anymore.
Christmas. I didn’t feel grief, which was a very strange feeling not to have. I’m not really sure where it went. For a while I assumed it was hiding somewhere ready to pounce. It has troubled me at times. I kept wondering was I repressing and dissociating. Had I unconsciously buried all of the heart ache. I though maybe I had become cold and emotionless. Why would I be doing this? I thought I had done WORK on myself!! So anyway I passed through all these feelings and thoughts and arrived at some realisation that grief hasn’t really gone anywhere. Its simply changed form a little. I seem to be functioning a little easier with every day life. I have to treat myself and the world around me with great tenderness for that functioning to happen. I feel Gratitude for having this incredibly special little boy in our lives. For the human he was and for the vast shining light that he is for us now. Yes it would have been nice to have had him for longer, yet at the same time, the time we had was so beautiful I don’t think 100 years together could have changed how special and wonderful the time was. Time doesn’t seem to take on the same linear form anymore. It just comes in moments and the moments with Oisin were pure magic from start to end.
Whilst grief didn’t show up too much over Christmas it has shown up during my return to work. My return to work arrives at the same time as Oisins anniversary. I work where I used to live. Where Oisín used to live. I often go for a walk to reconnect with myself during my lunch break. It’s hard to sit and be social at times and I know my colleagues get that. But then I go walking and I see where Oisín used to play, where we lived, where he went to preschool for such a brief time. A pleasant walk to get a cup of coffee becomes a painful trip down memory lane. I spend most of the walk in tears and through all my seeming strength it shows me just how fragile I can be given the triggers. This journey through grief seems to become more silent over time. You don’t really mention it as much. Look at my blogs. More time passes between them. It barely feels appropriate to post any more. Time has gone on. What do people want to read all this for now. I’m not some reality TV programme! What do I do it for. I don’t know. It feels like it is honoring the special Oisín events.
We haven’t planned anything for Oisin’s 3 yr anniversary. I find that our ability to plan ahead has gone. We lit a candle this evening, as have friends and family. Perhaps it’s a sense of indifference that isn’t necessarily disconnected or dissociated. It’s just that dates come and go but really they are still a string of moments. Oisin’s death is still present before, during and after today. Not sure how to put it into to words really.. We might go on our beach walk in Myrtleville again. Some sort of ritual and space for reflection seems to fit on these occasions. Barry took some time during his lunch to visit the Honan Chapel in UCC, and Oisin was remembered in a memorial prayer. He sent me a picture of the art work on the floor. It is a beautiful mosaic representing the river of life.
There is no doubt that the pain of Oisin has opened me. It has opened me and it can feel so raw, but the love and wisdom that comes from this opening is incredible. There is expansion and merging with self and all around. Everything is connected. Yoga has been such a powerful tool for me as I go along this journey. The word yoga means to “yoke” where self and infinite merge together. I am so grateful to have found this practice that I can do as often as I like. It’s like the ultimate tool for modern day living and I’m ready to share it with others. A woman who has inspired me lately, Canela Michelle Meyers, recently posted that suffering is not suffering once we start opening to it. A loud YES to that, dear Canela!
I was due to teach yoga last night. Then Cillian got sick and suddenly I was cleaning up puke and passing him tissues. Yoga was cancelled. Then this morning, Fionn took a nasty fall. He’s fine now. As all of this drama unfolded, our silent vase of lillys sat on the kitchen windowsill, witnessing it all. Barry bought them home last weekend. We saw the first lilly begin to open last night. By this morning almost all of the lillys were open, revealing their delicate pink petals. I look at them and see a beautiful heart opening to the mixed feelings of the day. xx
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.
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.
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.
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.
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
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.
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.”
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
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”
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.
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.
Deep 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.
Autumn leaves once more
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.
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.
I 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.
Reflections post Barretstown
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
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.
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.