Walking the path
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.