“I’m not going to write about this weekend”, I said to the lady from Lincolnshire as we watched the candles flicker in front of the hotel steps at The Compassionate Friends annual gathering earlier this month. “I need to write about mine and Ralph’s trip to New York” I explained. But, I also explained to others that weekend, how sometimes, I think I’m going to write about one thing and then something else rises to the surface needing to be written about. I often sit down at the keyboard and begin to type and learn, as the words pour out, that what I actually think or feel about something differs from what I had originally thought. Writing helps me to process, to learn about myself and my grief.
So here I am a couple of weeks after the weekend in question, starting to write a completely different piece to the one I had originally planned. Requests were made for people to write about the gathering so as to encourage other bereaved parents to attend the event. I believe this is important, but I knew others would write and so even as I climbed into my car after lunch on the Sunday, I was thinking that my post for November 2017, my one year blog anniversary post, should be about our trip to NYC. But as I drove and thought about the positive weekend I had just spent, I realised that I did need to write something which touched on the weekend I had just spent with other bereaved parents, grandparents and siblings; not a chronological nor a factual report of what happened, the talks, the activities, the subjects on the agenda or the candle lightings, but more about how I felt that weekend and afterwards. For pretty much the first time on my journey after Phoebe’s death, I felt like I completely belonged within a group of bereaved parents. For the first time , I felt truly accepted, there was no nagging doubt that I was perhaps strange and that the way I wanted to grieve for Phoebe was somehow wrong.
The death of a child is an incredibly isolating experience. I have been very lucky with regard to the support that I have received and continue to receive on this path, but it can still feel incredibly lonely. People can offer sympathy, care and love but they cannot understand fully what it feels like to witness the death of your child, your four and 3/4 year old daughter, then to try to re-shape your life afterwards unless they have experienced child loss themselves. The death of a child is not a common occurrence in the UK; I didn’t know anyone in person whose child had died before Phoebe’s death. I had read about other children who had lost their lives to LPIN1 on the Shine for Thomas webpage, but I didn’t know their parents beyond Facebook and as a result they still felt almost as far away as if I had read about them like you read sad stories about the death of a child in the newspaper. Something that happens to others, not to your child.
I’m not sure if it was within days or weeks after losing Phoebe, but very soon after I began to look for support groups; I felt compelled to find others who knew what it felt like to live through and beyond the death of your child. I quickly landed upon the webpage for The Compassionate Friends UK, I called their helpline and spoke to a gently spoken man, who told me there was a new group not too far from us and that he would contact the organiser on my behalf and that he would also send me further details of their support services including online support groups. I felt relieved, I was going to be able to connect with other people who would be able to offer support from a place of personal experience and understanding, who would be able to empathise and offer encouragement and hope. Hope was what I needed to find and see the most; I desperately needed to see in the shape of others, that the all consuming pain I was feeling was surmountable, that I would be able to survive..
But unfortunately it wasn’t that simple; my early experiences of support groups, in person or online, with TCF and elsewhere were mixed. The hope and the encouragement I needed to find were, for me, initially elusive. I was shaken by the depth of the some of the despair, the anger and the bitterness which seemed to prevail. I needed to believe that things would get better and that I would be able to survive. However my early attempts at encouraging others and seeking out positivity were not universally well received and even rebuffed… I struggled with some of the debates and got involved in discussion threads that I perhaps should just have scrolled past. I read how others described the groups they belonged to as sanctuary or as a “safe place”, the only place they felt they were completely understood, but this wasn’t the case for me. I had thought that having experienced “like loss”, finding other parents who had lost a child, particularly a young child or their only child would automatically be a unifying factor, but I have learnt that this isn’t necessarily the case; being like minded or of a similar outlook has felt more important and at times over the past year it has felt like I would never find my place or a loss group in which I could wholeheartedly belong…….. I have questioned myself and doubted whether I would ever again belong fully to a community, of bereaved parents or otherwise. Would I ever find my tribe?
I hobbled on. I tried to participate, but my early experiences, often left me feeling worse, whether that be frustrated, despairing and on occasion, even angry. These are all draining emotions. Although many clearly found great comfort in these online groups, it wasn’t helping me and I had to take a step back. I left one group altogether, so incongruous was the “fit” and upsetting was my experience and my participation in others began to diminish. I needed to seek out hope and inspiration elsewhere. I felt as if I was at risk of drowning in sorrow. I had found an in person TCF group just north of Manchester which was run by a woman whose resilience encouraged me and I began to read, seeking out hope in inspiring stories and books of “overcoming” loss, trauma and adversity….
One of the first books which I read after Phoebe’s death which actually resonated and offered me hope, was “From Grief to Growth” by Paula Stephens. She also told of the despair and rumination that she had seen in child loss support groups, especially online and talked of the importance of evaluating the culture of any group to explore whether it is the right fit for you. Be prepared to try a few, she wrote, until, like Goldilocks, you find the group, which for you is just right…. This restored my hope, perhaps I just hadn’t found the right group or the right environment yet. I wouldn’t give up…
Beyond these words of wisdom, Paula also referenced the work of social scientist and author, Brene Brown, whose books and work on the subject of vulnerability and courage, as opposed to grief specifically, I have gone to devour and which have nourished my mind and soul.
Her books have helped me to find the courage to be me and to grieve my way. I recall a conversation, not long after my first foray into the world of Facebook grief support groups, where it was suggested that it can be useful to observe the tone and unspoken protocol of a group and adopt it in order to fit in… But I didn’t want to just fit in. I wanted to belong and belonging and fitting in are two very different things. Brown explores this well. In her book “Daring Greatly” she describes how she interviewed a large group of Eighth graders ( I think this is around age 13-14) asking them to come up with the differences between the two. They articulated this in several pertinent ways including:
“Belonging is being accepted for you. Fitting in is being accepted for being like everyone else”.
For Brown and more importantly, for me, they nailed the definition.
She tackles the subject again in her latest book which I’m in the process of reading for a second time: “Braving The Wilderness. The quest for true belonging and the courage to stand alone”. About this work Brown says:
“As it turns out, men and women who have the deepest sense of true belonging are people who also have the courage to stand alone when called to do that. They are willing to maintain their integrity and risk disconnection in order to stand up for what they believe in”
Perhaps this was what I had to do, I thought. I would have to go it alone…
But I didn’t want to retreat. Stephens and Brown both describe the dangers of isolation and disconnection. Brown talks of how we are social beings, wired for belonging and desiring of connection, but perhaps I could connect in other ways?
Writing my blog had so far helped me to connect authentically; I was able to express myself, without the pressure of a discussion or risk of conflict in the moment . At first I worried what others might think and felt hurt and misunderstood if what I had said was not received well and I did make some errors of judgement, but my bravery began to pay off and increasingly people reached out to say something I had written had resonated with them. I received encouraging messages (thank you to those of you who sent them from the bottom of my heart) but, connection is addictive and I felt the need for more regular contact.. It was definitely better for me to avoid debate and rumination, it was better to simply put out in the ether what I was thinking, feeling and hoped for and let others who were like minded come to me. Perhaps it wasn’t about finding a group to join but more about having the courage to be myself and trusting others would find me??
And so I began my Instagram diary.. I had observed that other bloggers whether specifically focussed on loss or otherwise had Instagram accounts and used this medium to post more frequently and in the moment. I had set up a personal account long before we lost Phoebe, but I had never really understood or really used the platform. I didn’t get the need for it I suppose, but now I did so in June I began posting my little squares. I now post regularly trying to honestly document my grief journey as it happens or as thoughts occur to me.
I began to slowly attract followers and find inspirational accounts to follow. Not thousands, but this isn’t a numbers game, just a few “me toos” can be immensely reassuring. Instagram isn’t like Facebook. On Facebook you tend to connect with people you know in some way and you join groups; connection is established via acquaintance and like circumstance. But Instagram is different, here connections are formed on the basis of being like minded; you attract likeminded followers and seek out those who resonate for and inspire you. In this way there is no need to feel pressure to fit in to a pre established group. The people who don’t “connect” with you, simply don’t follow you and you don’t follow them.
Over time “likes” and followers have evolved into messages and exchanges of support. There are a number accounts with which I feel I have really connected and bonded with. I look out for their posts and offer them support and they do the same for me. On dark and low days, their words in response to my squares have lifted me, wrapping me in warmth and with a deep sense of acceptance. My self esteem soared when another blogger, referenced my account as one she follows for inspiration….. Me, stumbling through this mess inspiring someone else… wow….
But having a small network of flag wavers around the world still didn’t feel quite the same as connecting face to face. Call me greedy but, I still longed to be able to connect with more like minded bereaved parents face to face, so I decided at last minute, to take a gamble and book onto the TCF UK national gathering. There were no more spaces, I put myself on the waitlist. I felt sure a space would come up and it did. But I was nervous.. Would I just feel like the odd one out again? “Why are you going if you’re worried?”, a friend asked me, “because I have to try”, I answered, “surely there must be other bereaved parents with a similar approach or outlook even if they’re few in number. I have to keep trying to make connections”. I said the same to the TCF group leader who deeply I admire, “I can’t be the only one..” I said “no” she said encouragingly, so on Friday 10th November I drove down to Northampton.
The reception I received bowled me over… I was welcomed, with warmth, understanding and most importantly of all acceptance.. In the hotel foyer I was greeted with the most genuine of hugs from a lady I had briefly met at the TCF weekend Ralph and I had attended earlier in the year. My fears immediately began to dissipate and my courage grew, perhaps I could belong after all? We were divided into small groups of first time attendees to the gathering and I drew strength from offering my perspective without rejection. While I knew that my explanation of how I try to let go of “shouldn’t be this way” grounded in a belief that we none of us have a right to a long life didn’t resonate fully with all present, I didn’t have a sense of neither tumbleweed nor being challenged, rather careful consideration of another point of view… This fed my courage further and in a larger group I shared my belief in the practice of gratitude; rounding of each day by reflecting on and writing down as often as I can, at least three things I have felt grateful for in the day. Previously I would have held back from sharing such an idea, fearing wholesale rejection from the majority of other bereaved parents expecting a response more akin to “we have lost our child/children, what an earth have we got to be grateful for…” but I was proven wrong; “I wouldn’t have accepted the idea from a non bereaved parent” another bereaved mum shared with me one to one “I think you’re amazing” she said looking me squarely in the eye.
I didn’t feel amazing on the Sunday morning when I awoke with a hangover, a result of feeling more relaxed than I had done in a long time and gin….. But despite the headache and slight queasiness, I felt uplifted. “I read your blog” the lady from Lincolnshire told me; “I admire the way you think” said another mum “I hope you know how amazing you are” said another as she gave me a warm hug goodbye….
My self esteem soared, I almost floated home or at least, gratefully into Corley motorway services with 0 miles in the tank… I filled up and carried on my way, my tank and my spirits full…
It’s not unusual to experience an emotional dip after attending these kind of events. An analogy of a “grief MOT or service” was used to describe the weekend on a couple of occasions, but as with any annual check in the benefits are not impervious to wear out.. However, that said, while, I haven’t flown seamlessly over all bumps in the road over the course of the 2 to 3 weeks, I have definitely felt different and newly encouraged that I am not alone and not just as a result of the messages of encouragement which have been shared since, but more by the overall sense of acceptance which I took home and to heart.. Messages have been exchanged, but not huge or overwhelming in number, but they don’t need to be, as with my Instagram experience a single message of encouragement or acceptance has the power to reassure me of the courage of my convictions; that the way I have and am, grieving for Phoebe, is valid.
As I have revisited “Braving the Wilderness” by Brene Brown this week, her definitions of “True Belonging” now resonate even more strongly, compelling me to underline key paragraphs so I can find them more easily whenever I feel in need of the reminder…. “True belonging” she writes, “is not something that you negotiate externally, it’s what you carry in your heart”. She is right, there is nothing quite as powerful and reassuring as feeling that you are accepted for who you are rather than feeling that you need to change in order to fit in..
In the opening chapter, she describes her struggle to reconcile a famous quote from one of her idols; the American poet, Dr Maya Angelou:
” You are only free when you realize you belong no place – you belong every place – no place at all. The price is high. The reward is great”
As social beings, we need connection to belong, Brown rationalised, belonging nowhere couldn’t be a good thing… but through staying true to herself and her work, by rejecting the pressure to conform and by subsequently being rewarded by positive endorsement, the true meaning of these powerful words eventually rang true for her as they now do for me….
My path is not the path which feels right or natural for all, but that doesn’t matter as long as it is right for me. I might feel, out there and alone at times but I now know that I’m not alone. I do belong. Being authentic might not garner me a tribe of thousands, it can feel uncomfortable but from my experience I can truly say it is worth it. Taking this path has the power to deliver genuine connection and a deep sense of self acceptance and belief, “the price is high” as Angelou says but, “the reward is great”….
At the risk of sounding full of myself, I’m just going to say it: I feel quite proud of how I’ve managed to survive this far; of my resilience and determination. I’m not foolish enough to think that at just 14 months after Phoebe’s death that I have this grief thing sorted, far, far from it. I know that it will continue to pull endless rugs out from under my feet. Grief is not a linear process and continues to be a daily roller coaster ride, flashbacks and nightmares caught me unawares just 2 days ago out of the blue, I’m human… But right now, here as I type I feel confident in my ability to pick myself up each time it upends me and if I’m struggling I know that as long as I remain true to myself there will always be others including other bereaved parents who will encourage me. I have my tribe….