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.
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.”