1 year…This very weekend was booked to be our wedding, a long weekend in the Lake District with our family and friends celebrating our marriage yet instead we mark a year since our dearly loved son passed away…
How has a whole year passed?! One long year since I held my beautiful, brave boy in my arms, since I used his name in present tense rather than past, since I stroked his blonde hair and kissed his luscious full lips. A year to the day since I held him, provided his daily care routines, showed him every moment that he was truly loved and adored, a year since we made memories rather than looked back on them.
I fear that from now on I can no longer look back and say ‘this time last year Joshua…’ This year I have lived in the past, looking at photographs and Joshua’s journal, knowing that we were going through hell yet making memories, precious memories. Looking back, Joshua was so incredibly poorly, he required a lot of round the clock care but I’d have cared for him forever, and I’d have done anything and everything to have kept him in this world with me.
Time has passed so quickly. I worry that people will expect me to ‘move on’, I will never! I will only survive, I’ll adapt to a life of such loss and grief, and I’ll continue to learn how to live as this ‘me.’ The old me is no more, she ceased to exist when Josh passed away. I go to bed of an evening feeling lost, I wake up feeling empty, every moment of every day hurts but I find strength in Sophie, she needs her Mummy and I also find strength in trying to make Josh proud. I want to make positive changes in Josh’s name for disabled children, for I had a glimpse at the challenges faced.
When we were told that Josh was ‘#terminal’ (in May 2017) I refused to accept it, I used to scream and cry uncontrollably. Josh would have many #metabolic dips, where his brain and body shut down but he would always bounce back, of course he never regained 100% and always lost skills/development etc. but he was still our boy, our #warrior and he battled each ‘dip’ so much so that I believed that he was invincible, that he would always conquer his illness.
In August, Joshua began to sleep more; he’d be unconscious for days at a time, we willed him to bounce back, he had to, this wouldn’t and couldn’t happen to us? When Joshua woke he was trapped inside his body, though I KNOW he understood everything. He watched his sister constantly, they doted on each other, and he’d twitch his eyebrows to show me that he was listening. I still never truly believed that Joshua would pass; I always had hope, always! We took him for a long weekend in London; he went to #Wembley to watch his Daddy’s favourite Rugby League team, #WiganWarriors. Josh heard the crowd roar, our team may not have won but we had a great family weekend. Joshua passed that very evening. The details of which I rarely discuss, they are truly horrifying and only serve to add intensely to my #PTSD. However, Joshua was in the perfect place; lay cuddled nose to nose with me as he slept. Shock takes over, yet I remember everything as if it were yesterday.
This year has been horrendous, uncontrollable crying, pure heartache, numbness, loss, anger, denial, jealousy, physical pain… The list is endless. Very few people see me grieve, do not mistake this as me not grieving or being strong- I am not, I wasn’t given a choice, I am broken, of course I grieve how I could not? I grieve in private, I break, I become lost in sadness, in tears, in cries and sounds that I never knew were within me. A year has now gone by and the grief has not eased at all, they say ‘time is a healer’, well I can argue that ‘they’ lie! I am still overcome with grief; the only way in which I can try to describe it is that I am a zombie in amongst the world of the living. I need to learn how to live as this ‘me.’
I miss Joshua every moment of every day. I still drop things in the kitchen and turn to apologise to him as he used to startle easily, I still feel that I have missed his feeds or medicines. I still long to see him in the bath with Sophie, it looks so empty without him, I still look in my rear view mirror whilst driving and realise that his seat is not there. I struggle with bedtime stories without him lying on the pillow next to Sophie. I see him in Sophie all the time, they looked so alike! #siblingloss The reminders of our loss are endless and more horrifyingly these will continue throughout life, his first day of nursery, school, his prom, his graduation, etc.; these reminders are not needed whatsoever yet they lurk around every corner to torment me. I see children of similar age and wonder what Josh would have looked like, what he’d be doing. I hear children shout the name ‘Josh’ on the park and for a moment I allow myself to think what it would be like if it was our Josh playing with them. If only…
One memory in particular is the film Moana. Sophie, like most young girls is obsessed; we have film nights with goodies and Sophie often chooses Moana. We sing along to the amazing music, a film with a very moving soundtrack. Joshua used to love it; he’d either be cuddled up or sat watching in his specialised chair next to Sophie. The music will always remind me of him, I simply hear the first beat of the soundtracks and my heart skips a beat, my eyes well up, so bitter sweet- beautiful memories yet such heartache that he is not physically here. Emotionally, in the film Moana’s Grandma (as she passes) tells Moana that ‘There’s nowhere that you could go that I won’t be with you.’ This has always been my view; I am with Josh, wherever he may be, dancing amongst the stars, sat on the clouds above his tree, playing with helium balloons and kites, touching leaves in the trees etc. I am with him always, just as he is with me.
Music, a song for every emotion and every memory… From the womb Josh (and Sophie) always enjoyed music.
‘One step closer I have died everyday waiting for you Darling don't be afraid I have loved you For a thousand years I'll love you for a thousand more.'
Today we mark one year since our world was completely torn apart, we mark our first year of survival, and we mark one year since our brave, adored son found peace. For tonight, 2017 we gave our precious, brave boy a kiss goodnight and he never woke to see the next morning.
'Joshua’s journey to a magical place is a wonderful trip into outer space.
He jumps on a rocket ship and gives us a wave, blowing kisses and smiling, he’s so very brave!'