The end of the summer is always hectic for us as a family, we have two little Leo's and virgo birthdays all within August. It's exhausting. But this year Dexter reaching his 6th birthday was super special, it filled us with joy and tightened the severity, there was a doubt last year he might not see the year out, now stronger and happier, he's negotiating with fatigue and determination to get through his first days at school this week.
His strength has surprised us all and we are so lucky to have him. And although the COVID summer has been strained and hard and a struggle, we are taking each day with open arms because we all know a future isn't a given for anybody, but even less so with a devil-like a rhabdomyosarcoma lurking inside the inner workings of ones face.
The sad news of Chadwick Boseman, shook me to the core when news of his passing broke. I loved Black panther and he played the role with such stoic strength, no one would believe the ordeal he was living through and the limits he was pushing his body too and the fact that he lost his battle and died four years after his diagnosis. So many surgeries and treatments and so much life that he lived in those four years and yet it fills me with fear because once you live through something like Dexter has, are you just living on borrowed time? I hope not but I'm trying to live and manage with the anxiety that's now shrouding my previous life.
Other than three birthdays, getting ready for school and working around endless medical appointments, bloods and doing some creative writing for a few places, I'm excited about my Masters in scriptwriting that starts with Falmouth University at the end of this month.
Academia has been a great focus for me over the past two years, keeps me focused on a goal outside of the family and unfortunately my Masters in creative writing came to an end in October just before COVID hit, which was probably a blessing in disguise considering Dexter's diagnosis.
Now as this year goes on, I need a focus outside of the house, outside of the situation we're in and I look forward to writing some creative scripts and enjoying something new amongst this awful year. So that's super exciting.
I've always felt that September is an exciting month, I think the start of September has always been seen as a fresh start because its the start of a new school year and that process hasn't really ever left me.
It's now September because I've started my MA in Script and screen at Falmouth university, it's daunting and I'm excited to of been accepted because I feel it has more focused approach than the Open university, you have to submit your script work as a portfolio and it feels a more specialised course with higher prospects, so here's hoping.
Going back to school has been a huge shift but its going well for everyone, the fact Ethan is in sixth form, smartly dressed and enjoying his A levels feels awesome, I think he's actually enjoying having some routine and he's just started his first weekend job.
All of the children are all happier for being back at school, but I live in fear of the coughs and colds setting in as October looms.
heading into school with Dexter was much more emotional than I had ever anticipated. I think somewhere in my mind I was doubtful we'd ever make it back, to see him back in the classroom with friends, was a moment when I breathed a sigh of relief. My chest felt the drop as he turned the corner, showing his mates his new rucksack and rubbings freshly grown hair. I felt it was such an accomplishment we had made it, that the family had pulled him through all the months of hard work paying off for that small moment.
School for him hasn't been the easiest of transitions, some days he's exhausted, some days he's full of life and some days he rests. It's the new normal form him, in a year of abnormal changes, that have altered all of our lives.
Felix started high school, stoic like his brother he's taken it in his stride, rising to every occasion and before the government locks us all down again, we have been loving having more structures in our life.
This week Lily turned 14, the bank balance was hit hard by the needs of our teenage daughter. Covid put an end to the birthday party culture that was once popular, and a trip with one friend to Thorpe Park did the trick. It was fun, but going of exhilarating rollercoasters, while worrying about falling to my death while bolted into the chair was conflicting for a person who's obviously feeling a little battered by the nine month battle we've been in.
The fun was short lived and with the next set of three monthly scans, anxiety and the familiar sting of dread set in as Dex and I headed to the hospital. A large dose of chemo after a three week break, a chest x-ray and an MRI scan to assess what Bob the blob is doing inside that little face later and today... I'm feeling crushed by the sadness of seeing him endure the whirling MRI scan for an hour and a half and I'm chomping at the bit to hear 'good' results.
Is this now how life is every three monthly?
I've been playing it cool for the last six days but today my nerves are shot, my heart is raising and I feel uncomfortable in my own skins as we ...wait.
The waiting is the worst, you feel foolish for assuming all will be well, but part of the niggling unknown at the back of your mind persists as you play the aloof, 'it'll be fine' card. Until recently I never realised how connected ur bodies and minds are connected. Nervous and anxious I find I can spontaneously cry this week and my entire body is aching, with unsettled with feeling uncomfortable. Trying to brace yourself for the relief or for a blow, hard enough to unearth the roots that keep us standing. So we are left with tendons and bone aching under the torn mental states that we twist between.
Despite all the urselves visits and the hospital trips, Dex is full of life, learning, reading, drawing and its so lovely to see. This week we are looking forward to being sent to Centre Parcs by the PDCCF a charity that nominate families to have a break, it'll be great for the kids, its amazing for the kids because we've been too frightened to go anywhere and we all need a rest from our home after the last 7 months of mainly being at home, we are just praying we won't be shielded again, we can't possibly do another three months not leaving the house.
Im so conflicted by the shielding protocol, they expect me to pull everyone from school and we all stay locked inside with minimal exposure to the outside world, because Dexter is venerable, but at the end of our shielding in June they said children weren't at risk, only children that had been transplant patients and on drugs that meant they were at risk.
Yet hearing we may be forced to shield again, I feel this is damaging to all my children mental health, social skills, educational development and it feels like a lot to ask, when we take Dexter into hospitals weekly and nurses and strangers are visiting him for medical reasonings, its a very frustrating situation to be in.
Let's hope it doesn't come to that again.
Today Quill is six months old. Our little therapy baby had chunked out and become a chilled member of our family, the one we all hug for cheer and closeness. He's special, its his super power. To sooth. He continues to be Dexters greatest love within these four walls. The bond between them strengthens by the day and it's beautiful to see.
I feel I have skimmed over four weeks of silence with little in-depth info, but this is all I have to offer this week. I'm forever busy with what feels like this and that, its a bit of a slog and where the dust has settled I feel we are are still trapped in a story we don't want to read. Characters in a narrative you'd hope got thrown onto the fire but its hard not to see such love and hope when you see my photos, there is is so much love that the dark bits are out weighed, let's just hope tomorrows results continue on that path.
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