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 c
At present @ITV @Coronation Street are revealing a storyline for Jane Danson (Leanne Battersby) and Simon Gregson (Steve McDonald). This story of a #mito diagnosis became our reality on this day in 2017, just 8 days after Josh's 1st birthday, after months of incorrect ‘viral’ diagnosis’, hospital admissions and then confirmation of extensive brain damage. We arrived at ‘that day’ On this day, I remember being so very cold, my body went into shock and I couldn’t stop shaking.
Today Oliver is 6 months old! I have no idea where the time has gone, for most this is a simple monthly milestone, for us it's a sigh of relief... The past six months have, in truth, been very difficult, Oliver is loved and adored but he's been a very different baby to Sophie and Joshua due to terrible reflux and colic. We honestly feel as though we've been in a whirlwind, and with severe lack of sleep as Oliver has struggled to settle, unfortunately he hasn't been the most
Oliver is 3 months old, I admit that I feel as though I’d been thrown in to a whirlwind since July and this is the first time that I’ve sat back to reflect upon it, it’s been exceptionally tough! Any neonatal journey is difficult, having your baby enter this world before its due date is petrifying the key questions being, will my baby survive? Will there be long term health/medical issues? Etc. For me, I knew that having a baby after losing Joshua would be emotional but I p
Sophie, Joshua’s older sister started nursery just ten days after Joshua passed away, an extremely difficult transition for her and for me. Our attachment meant that in the rawest of grief we needed each other, therefore she only did very short sessions which developed with time. This week Joshua should have begun his nursery adventure, instead we mark two years since his funeral. I use the term ‘funeral’ loosely. If truth be told I was unable to give Joshua the funeral he de
Joshua and Sophie are now older siblings, their brother Oliver James couldn’t wait to make his arrival! On Saturday 6th July, Oliver James was born at 15:17pm after spontaneous labour which came as a huge shock to us all at 33 weeks plus 3 days. We are all absolutely besotted and overwhelmed with love, Oliver's arrival was an extremely emotional experience, more so than most births, due to the devastation of us having experienced #childbereavement. Oliver is currently on the
To James on Father’s Day 2019, You are appreciated for being the most amazing Daddy to our children. You have supported me in every way since our lives were torn not only with the #grief of learning of Joshua’s brain damage but especially since our lives were ravaged by his #terminaldiagnosis. I couldn’t bear to face the facts when we were told of Joshua’s fate. I couldn’t even look at the consultants, though I was in shock I remember you holding me and you’ve held me ever si
These photographs 1 year apart... 💙💔💙 On the 16th May 2016, our world was perfect, Josh was 8 days old being doted on by his loving sister as always! One year on, on the 16th May 2017 we were in, Manchester Children's Hospital, this picture shows the strength of our love but it also shows a small snippet of the desperation to make memories during the absolute devastation we experienced on the exact day we learnt that our precious boy Joshua would not survive. The 16th May
Today, 8th May 2019 we mark our beloved, brave Joshua’s 3rd birthday. It breaks our hearts not to be celebrating as we should be, to only have the ‘what ifs’ of imagining what would have and should have been, to see our little boy opening his gifts on his special day, to holding a celebratory birthday party and to glimpsing at the hopes and wishes of all the things to come in his next year. Joshua was born via a planned home birth May 8th 2016, we were overwhelmed with love.
#MothersDay 2019 Happy Mother's Day to all of our #JollyJosh mummies x It’s been 1 year and 7 months since Joshua passed away, how is that so? Time seems to stand still and yet the world keeps turning, some moments feel like Joshua is still here, others like the loss is new and sometimes it already feels like a lifetime ago since I held him in my arms. My arms do not cradle both my children today, nor do they any other day, though they long to, instead they try to keep busy t
2016, our one and only Christmas with Joshua.
Our brave boy was covered with chicken pox, we'd just found out that he'd experienced extensive brain damage but had no idea as to why, or as to just how much this would impact and devastate our entire world!
Here is Josh on Christmas Eve, he was supposed to be going to sleep yet he always mistook bedtime for playtime. Time is blurred, the memories feel like they could have been from yesterday and yet also feel from a past life.
Celebrating One Year of @JollyJosh… The idea of ‘#JollyJosh ‘a year ago was ‘pure imagination’. A chain of events would lead me to realise that there was a gap in the system; the solution would become Joshua’s legacy. Jolly Josh is a lifeline for families who want to access the service. In the early years when you realise that things are not ‘normal’ and that your child is not meeting milestones it can be extremely difficult. It is incredibly hard to accept that your child ha
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 da
I finished work in May 2017 to become Joshua’s full time #carer, the most special, rewarding role I have ever had! I was privileged to have spent every moment during the next three precious months with my brave boy and his loving sister before Josh passed away. Since then I have taken a year out of employment for #bereavement time (though I have volunteered at @SpringsideSchool since November and of course founded @JollyJosh). James has worked tirelessly to support our family
On this date 2017 (just 8 days after Josh's 1st birthday) we would be taken to the therapy room @Manchester Children's Hospital for our pre arranged meeting with Joshua's consultants, I knew then that it wasn't going to be positive news. I had thought that perhaps they'd explain that his disabilities would become more complex (if possible). I had no idea just how severe Josh's prognosis was, we were delivered the shocking news that Joshua had 'weeks if months to live.' On th
@SWAN UK (Syndromes Without A Name) celebrates #UndiagnosedChildrensDay 2018 #UCD18 Professionals are certain that Joshua had #MitochondrialDisease yet we are yet to gain an official genetic diagnosis, all tests completed so far have returned 'negative' results. #Genetic research is a vast process to which we (and many others) may never be provided with answers. With regards to ‘Undiagnosed Day’ this day has more impact than I once would have realised. The lack of diagnosis h