We are now four years into our grief journey, and it’s not become any easier, time IS NOT a healer. I no longer cry every day, but Joshua is in my thoughts throughout, casting a feeling of numbness, a sense of emptiness.
Upon reflection, I changed the day that Joshua passed away, I didn’t want to but how could I not? I have felt the most mental and physical pain humanly possible, child loss. Its effects are life changing, personality changing and I’m now learning that I can’t fight it anymore...
Initially, when Joshua passed away, I worried too much about how my grief would impact others, I didn’t want to be the ‘depressing person’ who made everyone feel awkward and cried all the time, I didn’t want people to avoid me and I fought hard to avoid the change that grief would bring. I never cried in public, I wore a mask when I stepped outside of my home to face the world and of course as predicted by my counsellor at the time, this was going to prove to be tiresome. I didn’t want grief to change me, I didn’t want grief to change my life.
Upon reflection, if I could start my grief journey again, I wouldn’t fight it, I’d face it at every opportunity without my mask! Had I have done this; I believe my journey would have been very different and the outlook would have been too.
After Joshua’s passing, my first meeting with friends was at a social gathering, and not just any social meeting, it was in fact a charity ball. I remember feeling a sense of guilt that only a few months since my son’s passing I was dressed in a cocktail dress, taking a selfie. But I also remember believing that if I didn’t ‘face the world’ in a social situation soon, I never would. Upon reflection, I was wrong, I didn’t need to rush grief, I know now that I’ve got a lifetime ahead of me to walk this journey, I needn’t have been so quick to run from it, it’s impossible to outrun.
I’d avoided previous attempts from friends who tried to make contact to visit me at home, to console me, even though it was something which I desperately wanted and needed to do. I did this due to my disappointment and anger in those friends who I thought would be there for me but were not. Those who cancelled their visits, or who provided excuses when friends suggested they visit, ‘they had other plans’ such as going for dinner with their partner, etc, those who I didn’t hear from or see for months upon months. Upon reflection, perhaps they just couldn’t see me grieve, perhaps they had their own problems, but more importantly perhaps I shouldn’t have cancelled on those who were willing to support me, yet I did in anger. I now know, had I allowed myself to openly grieve in front of my friends behind closed doors and in public, it may not have meant that I had to make the added effort to wear a mask amongst them and fight to be someone that I wasn’t anymore (the old me), because, she had gone, she left with Joshua.
Instead, each time we met, I got dressed, applied lipstick and wore a pair of heels, and braved a night out, I socialised, I danced, I smiled, I laughed, when in fact all I wanted to do so desperately was to fall apart and be embraced by my friends and have them tell me that they would walk my grief journey with me.
‘When you can’t look on the bright side, I will sit with you in the dark’
Alice in Wonderland
Upon reflection, maybe I didn’t need to present ‘the brightside,’ perhaps if I’d have allowed myself to ‘sit in the dark’ amongst friends they may have joined me? Some did, some friends of course saw through my mask, I hope they know how appreciated they are. They know when I’m struggling, they remember and acknowledge my ‘seasonal grief’ and they also realise the importance of Jolly Josh and my passion to make positive changes for those with children with Profound and Multiple Disabilities, and those with life limiting diagnosis. To those who will witness and support my continued grief journey I thank you for making the heartache I suffer more bearable.
Joshua’s birthdays and anniversaries pass, and I can usually count on one hand the number of people who remember and acknowledge this ‘seasonal grief’ ahead of my usual social media post and I'm often left feeling wounded by this. It’s at such times that I am deeply thankful for Jolly Josh (the charity I founded in memory of Joshua) as it provides me with a platform to remind the world that Joshua existed, he was here, he was my boy and already the world has moved on without him, but we never will, we only move forwards with him, always.
Upon reflection, when Joshua passed away, I was told that I would lose friendships, I denied this would ever happen, not to me. I’ve since read multiple blogs from bereaved mothers whereby this was the case, and it is with regret that I accept that this is now true for me too. I have lost friends during my grieving process, friends who I imagined growing old with. It’s possible that they couldn’t face me after my son’s death, they couldn’t witness the reality of child loss. Maybe life was too busy for them, they had their own problems, they couldn’t cope with my sorrow, or perhaps they couldn’t understand my mask, or lack of ability to socialise as I used to, maybe they didn’t understand my heightened anxieties, or maybe they just didn’t like the ‘new me’, the person I’d become, who knows...? Upon reflection, I am as much to blame, I hid, I created an illusion, I pretended to be coping and it turns out that I’m a damn good actress! When friendships faded, I didn’t voice the fact that it felt like an extra grieving process, perhaps my pride prevented me from doing so? I probably should have explained that it felt like yet another huge loss. I created an illusion that child bereavement was not going to change me, yet had I have been honest from the start, friends may have been more patient with me. Had I have told them that I was experiencing an emotional roller-coaster, battling waves of grief, experiencing anxiety (which I’d never known), perhaps then, if I’d have been open and honest instead of ‘going out out’ we’d have stayed in our pjs with several boxes of tissues and talked about the pain and heartache, because I know that as my friends, they grieved too. I know that they loved Joshua, and I also know how difficult it would have been watching our grief journey, it was ‘too close to home’ for them. Upon reflection, friendships have wavered or been lost, most likely due to lack of communication, upon reflection this could have been avoided.
Lack of communication caused confusion, perhaps due to the fact that I grieved privately, friends assumed that I needed their support to 'find the old me,' instead of their support to sit in the darkness of the heartache I was experiencing.
Upon reflection, I should not have had expectations for my friendships if I was not willing to share my thoughts and feelings and communicate how they could help me.
Upon reflection, I wouldn’t have fought my grief, I wouldn’t have fought so hard to connect to ‘the old me’. Instead, I’d accept the fact that child bereavement will undoubtably affect every aspect of life, and I’d take the time to close the doors on the world and accept the fact that I am a bereaved Mummy, there’s no choice in the matter and that crying, anger, anxiety, insanity, insomnia, exhaustion, jealousy, bitterness, trauma, flashbacks, etc all come with the new ‘role’ and I know now that’s something you can’t fight. It may be that with great effort, I am capable of temporarily ‘wearing my mask,’ but there isn’t a mask capable of concealing grief for eternity and I’m now learning to listen to my inner voice and choosing to protect myself from situations whereby I do not feel comfortable, I’m now trying to listen to my mind when it screams for some ‘self care.’
Upon reflection, I realise that I need people to remember Joshua, to know that he will always be a part of my life and will always impact my thoughts and feelings, no matter how much time passes. Which is why I am grateful for those special people in my life (some who actually never met Joshua) who mention his name often, encourage me to talk about him and acknowledge my ‘seasonal grief’ during his birthday and anniversary months, their support has been very much appreciated. There are those who I would have never predicted to have appeared at my door, (for example neighbours who I'm lucky to regard as friends), but they came, they may have been unsure of what to say and no doubt they would have been unsure as to how our interaction would unfold, but they still came offering friendship at a time of need, to me, this was incredibly powerful! It filled me with gratitude to know that they had purposefully and thoughtfully made the effort to acknowledge and support my grief, moments I honestly will never forget.
Upon reflection, there is no guidebook that’s going to guarantee you the easiest grief journey as a bereaved parent, and I also acknowledge that there’s no guidebook that’s going to enable friends to support individual grief journeys. especially if, like me ‘you don’t do things by the book.’
Hence, if I were to write my ‘top 3 tips’, I would have advised myself to
1. Take off the mask, be true to your feelings in public
2. Don’t worry about making others feel awkward, they probably feel more awkward in wondering why you’re not displaying your grief
3. Listen to your mind and body, don’t try to rush the grieving process, it will only prolong it. You’ll never out-run grief!
My 3 ‘Top Tips’ for those supporting a friend through child bereavement would be:
1. Have patience, you’re going to need it. You may not know what to say, there are no words needed, offer to be a listening ear, a shoulder to cry on and a hand to hold.
2. Initiate contact, make regular contact (even if you receive no reply, simply send ‘thinking of you,’ etc.) Make the effort to remember and acknowledge ‘seasonal grief’ such as birthdays and anniversaries, a small gesture of a text/card will mean more than you will ever realise.
3. Offer practical support, cooking, helping with siblings, food shopping, etc. Those grieving may not be ready for visitors, but you can always leave goods/packages on their doorstep, I have no doubt your thoughts/efforts will be gratefully appreciated.
Today, the pain of losing Joshua is now a constant dull cloud, casting ‘brain fog,’ I forget things easily, I lose my train of thought and sometimes my vocabulary, and sometimes I feel as though I’m losing my mind. I struggle to be social for more than a few hours, the effort it takes becomes all too much. The chaos in my mind is often so much to bear that anything additional such as every day functioning becomes a huge exhausting task, let alone socialising for lengths of time which now seems to stretch my ability. I constantly suffer from vertigo/dizziness, my mind feels busy all of the time, admittedly I am incredibly busy, I’m a Mummy, I work full time and I’m managing a charity but the busyness in my mind feels more than this, it’s a whirlwind of never ending thoughts, the feeling I’ve lost something precious, I’m searching for it, except I’ll never it because ‘it’ is Joshua. Flashbacks and memories pop into my mind, and I can be caught in a daydream or a trauma, sometimes without warning or trigger. I seek comfort and security from James (my husband), my family and close friends.
Sophie (Joshua’s sister) continues her grief journey, as informed by professionals, her grief is developing with age. She asks questions which we should not have to answer, and a 7-year-old should not need to know, sometimes we actually do not have the answers, we simply try to be as honest as possible.
Oliver recognises Joshua in photographs, he points and says ‘Josh,’ we will continue to say his name daily and teach Oliver all about the older brother that he never got to meet though they will always share a brotherly bond.