When he’s close to me, sometimes I get butterflies and I just know that our life will be one great adventure.
I continually receive encouragement to keep writing, to keep documenting this journey we find ourselves on, to keep sharing with others how we are doing. People ask me how I am. I never know quite what to say. I am so many emotions. I am having so many different experiences. These are the early days of our grief.
Back to work
In terms of what we have been doing, Barry’s return to work last month has been a focus for him as much as it has been a challenge. Cognitively, we both feel like we experience difficulties making decisions, concentrating, memory etc. The slightest bit of stress can trigger a very emotional response that is usually more about our grief than any particular circumstance. There are so many ways that grief impacts on our body and our mind. Barry cycles to and from work, which helps him to “decompress” and rebuild energy reserves.
I did not go back to work straight away. I wasn’t ready and I needed to get Cilly sorted out with child care. Last week I arrived at a point where I was ready to try work again. My boss, Daniel, has been really supportive and given me the space to take my time and go gently. Thankfully he is that kind of manager, and we both know in giving me space I will make a much more adaptive return that will be at a pace that feels right for me. Well, that first day came today. I was surprised by my fragility. When I saw Cilly go off in the car with Suzanne, it was like Oisin was left behind. Then when I contemplated walking out of the house it was like I too was leaving Oisin behind. We were all going on with life whilst Oisin will forever remain just 3 yrs and 11 months old. I had an image of him looking at us as if he had just realised for the first time that he wasn’t one of us any more; and the fun days of mummy and Cilly being around the house had come to an end. It broke my heart to have that image of him, our little boy who will never grow old, standing in the hallway watching us as we walked away. I felt so sad. My friend and colleague came to meet me and I made my way into work. I spent most of the day with a cup of tea in my hand, staying very much around the safety of our room, and in the company of my closest colleagues. I finally opened up the computer and after that I pretty much went into work mode. I actually found it satisfying to start making inroads on the email. Not such a bad day and I felt pleased that I had gone through the hardest part. It will be one day at a time but it means so much to have a supportive team of people around me.
We have also been trying to get ourselves therapeutic support. Perhaps it’s the profession I am in but it seems very natural to me to seek out this support for all of us. I believe therapy can be a wonderful opportunity to really learn about ourselves. I’ve used web searches and my therapy connections (all online) to access support. Other forms of support came in more unexpected ways.
We have continued to participate in a form of family therapy within the “Sesame” approach. Oisin was part of this too. Raphaela has been a beautiful therapist to sit with and has introduced us to stories, play items and all kinds of wonderful musical instruments. It was a natural progression to start working with Barry and I in some individual sessions. We have benefited from these and I have found myself expressing all kinds of emotions through movement, much to my surprise I might add!
Through online searching, I came across Anam Cara, a support group for parents who have experienced the death of a child. They host monthly regional meet ups for parents to meet in an informal setting. When I emailed the co-founder for further info, she replied with an email that had me silently shouting, “yes, yes and yes that is exactly what I’ve been going through.” Turns out that she too had a daughter who died from DIPG, the same brain tumour as Oisin. We went along to our first Anam Cara support meeting at the Silver Springs Hotel on Wednesday evening. It was an information evening. It was the strangest experience to walk into a room of fellow humans who have been through this and all knew instantly what we were going through. We were without doubt the youngest there and the friendships people seemed to be making were with others who had gone through exactly the same type of experience. For many parents the shared experience was the loss of a child to a road traffic accident. I found myself wanting to find the people who had lost their child to cancer, or some kind of life limiting illness or to parents who were finding a great deal of spiritual meaning in their experience. Our first session was an info evening with a guest speaker. She was a social worker who had worked with many individuals who had experienced the loss of a child. As she spoke about the grief process, and how people seemed to do quite a different process to the traditional “stages of grief” it was clear she rang home with the whole audience. She talked about going back and forth between a mode of “loss”(yearning for the child who is no longer there) and a mode of “restore” (getting on with the every day tasks of living) and how space was needed to be in both. She talked about the continued relationship and connection that parents maintain with their loved one. She talked about so many other experiences of grief that resonated with me. It’s our first meet so we will see if it is a fit for us. I am looking forward to meeting the co-founder, Sharon, and her shared experience of DIPG. As rare as DIPG is, we have become aware of a couple of other parents who have also lost their children to DIPG. We never went looking for these people and yet they have arrived on our path.
I continue on with Kundalini Yoga simply because it has helped me to stay very grounded and connected to myself. I have decided to take it one step further and I am all booked to go and train to be a Kundalini Yoga teacher myself. I could do this training in Cork but something within me says I need to take myself away and immerse myself in the process. So I will be travelling to Italy, where I will have three separate weeks of training at Yoga Borgo in the hills of Umbria.
People have given me sessions with various practitioners and body workers as a gift, for which I am incredibly grateful. They will be happening soon. A friend of mine put me in touch with a well known spiritual leader in America, called Ram Dass (author of a pivotal book called ‘Be Here Now’). I signed up for his newsletter, which offers many teachings around death. There was a podcast that Ram Dass was giving on mortality. I subscribed (for free) and submitted some questions in advance. Well it seems I had rather a lot to express and the administrator wrote back and offered me a one to one session with Ram Dass himself!! Therapy and guidance is coming in so many unexpected ways. If any of what I write resonates with you then please go to the help and support section, which I intend to develop over time.
Cilly is emerging out of himself and it is an utter delight for us to witness. We continue to talk about Oisin every day. He likes to write him letters or tell us that he has dreamed about him. As one wise lady said to me, he is learning the script we are giving him and it is one that is proving to be positive for him. Of course, he has seen me cry and I tell him why I cry. I think this is also important for him to see. It gives him permission to miss Oisin too, and for Cilly this is permission to express emotions he might not be able to directly communicate in words, as we can. I hope that he mostly sees me smiling at him, and in that smile I hope he knows how amazing I think he is. He is my inspiration, my light, my joy. He has found a confidence in himself and enjoyed all our recent tours of playschools. I have finally found a one that I think will be a good fit for Cilly right now. So we are all set up with a lovely, fun, playschool and child minder combo and very importantly for me, I will be with him for half of the working week on part time hours.
A note on the pain of grief
Losing a child has set up a pain that seems to have taken residence, but is a kind of pain I somehow wish to keep onto. If the pain was suddenly removed, it would be like removing Oisin from us. It would be more unbearable to remove it than to keep it. It is the kind of pain that no matter how “busy” I might become, it will come with us and start to build and build until crash – the tears flood my eyes and I can do nothing more than stop and make a space for it. In this space I find a deep saddness and yearning in my heart for my little boy.
The slightest thing can trigger my connection with this pain. I woke up one morning to a particularly cold day and was suddenly flooded with images of Oisin’s cold body in those hours after he took his last breath, and of our hands on his heart. These memories are so hard to have in me. Yet I find if I allow them to come, and move through the feelings they bring, they leave me again, and they never return with quite the same emotional impact.
Connections and meaning-making occurs on a daily basis. My life and my self seems to be going through enormous change. I can see it in Barry too. I seem to have awakened to something that was always there in me but it took this experience to notice. Whatever it is, it seems to guide me, like a light from within. It helps me let go of the things in life that used to cause stress and sadness. From the everyday things that a mum may fret about, to some of the inevitable traumas I have accumulated along my life’s path. I am learning to trust this kind of inner something because it seems to have a very definite journey laid out for me. It seems as though I just need to walk along my personal “yellow brick road” and I will find, as we all can, the hero within. Oisin walked his hero’s journey so beautifully. We saw him shine brightly out of his deteriorating human form. In walking his journey he has unveiled a path for us and we feel stronger to walk it because of what we we saw in him. I’m not sure why all of this learning had to come at such a cost. Some things we may just never understand.
It seems as though it is down to ourselves to try and get the support we need. It is out there if we look for it. There is a readiness too, and only the individual can know when it’s the right time. Therapy is by no means an easy path to go down. One of the reasons for this blog is to show, through doing a warts and all account of my experience, that humans can survive this and can use suffering and pain to grow. At least I hope that is what we will do. If we consider the whole world and not just the West, human suffering is a part of life and it is not such an unusual experience. Even though I cannot humanly comprehend what has happened and it will take a long time for me to let go of the “why us” question (which I do feel I am nearing an answer to), I don’t intend on being a victim. This experience is a gift as much as anything else. I truly hope I will always see it this way.
The memorial ideas for Oisin continue. I think it is fitting to use some of the money we have been donated. Just to say it, we will be very respectful with all of the money that has been donated and there are a number of causes that we want the money to go to and some of which have already benefited. We will put details in the donations section of the blog as time goes on. I know the Ballymore community would really like us to do something in Oisin’s honour so it seems right that their money goes towards a memorial. A colleague suggested a bridge. I like this idea. The concept of bridging two worlds. Children playing on the bridge. It has a flow to it that is different to a static bench. I like the bench too because placed in the right context, sitting in nature is where we can often contemplate life and can feel fully present in a moment. Then there is the idea of the butterfly and the idea of the tree – poignant symbols of life, death, maturation, transformation, beauty and nature.
Other sections of the blog
I have just updated the donations section of the blog to list the organisations that benefited from your money. We still have an excess that we will plan to donate to research and will also go on the memorial for Oisin.
You might also be interested in following the blog. You can click a button (+follow) in the bottom right hand corner on this blog to follow it. Once you do this you will get an alert when a new blog is posted. Might be helpful for some of you.
I have added a lot more to the help and support section and divided it up a bit. Well worth a look for books, articles and therapy links.
The tributes section is a work in progress and will contain the many inspiring poems and readings that we have been sent.
Love and blessings