It's lovely to meet you, thanks for landing on my wee space on the internet.
Now feels like the right time to properly introduce myself and I have a wee bit more to say than an Instagram post could handle so, here we are! Grab a cuppa.
I'm Amanda (waves) self diagnosed chocoholic and lover of being cosy on the couch. I'm wife to my lovely Husband John and Mum to my twins, Archer and Isobel who are 2 and a 1/2 and our crazy dog Walt.
I have always loved photography. As a young teen I was never away from the chemist putting my films in to get developed (yes, I am that old) and I was always the annoying friend who was taking photos at parties, looooong before camera phones - or even mobile phones - were a thing! It's funny how friends and family get annoyed at you snapping away but I've yet to hear anyone complain when they are looking back through old photos, photos are captured memories that may have otherwise have been forgotten, what's not to love?
I worked as a Saturday girl for a local photographer from my late teens through to my twenties, I had holding that reflector and straightening out that wedding dress NAILED. I really would have loved a full time job in photography but they so seldom came up and so I went for a 'sensible' job in the bank instead but kept snapping away at every opportunity. As you've probably guessed, a career for banking wasn't for me, despite climbing that career ladder to Branch Manager it just did not light my fire, it most definitely put it out. I yearned to be in a creative profession and also had a longing to be self employed. I looked desperately for a job in photography at entry level but it just wasn't there at the time, what was there though was a trainee position as a Florist! Random, I know but I thought hey, lets go for it. I got the job, ditched the bank and after a college course and a few years experience under my belt I had set up my own business specialising in wedding and event floristry - I LOVED IT! I had my floristry business for just shy of 10 years. It was my baby for a long time, before my other babies arrived and that's where the story changes again!
Are you still with me? This is a lot isn't it, I won't be offended if you bookmark me and come back later as the next stuff is well, a wee bit deep.
January 2020 - I find out I'm pregnant - with twins! A dream come true.
March 2020 - Covid, lockdown and a general sh*t show prevails
August 2020 - Our beautiful son and daughter are born
September 2020 - Our son starts to make odd movements and is very unhappy, all of the time
October 2020 - After weeks of trips back and forth to GP, Hospital etc our baby boy is diagnosed with a rare and catastrophic form of epilepsy called infantile spasms. Admitted to hospital within the hour, stay there as a family, locked in one room (covid restrictions) with no visitors for one month. Numerous tests ensue. Archer is seizing constantly whilst the Dr's desperately try to stop them with meds
November 2020 - Home, on anti seizure meds, taking each day as it comes
September 2021 - Almost one year since our boy has had a seizure, Dr's say they will look at weaning off meds soon
October 2021 - One week before our review appointment to discuss the above, Archer has a seizure
Jan 2022 - Seizures have ramped up to all day every day and all night every night. New meds are introduced, doses are increased, rescue meds are introduced, hospital stays are many - nothing is stopping the seizures
Feb 2022 - It becomes apparent that Archer has a weakness on the right side of his body. Drs say it will be tired muscles from so many seizures, Health Visitor thinks he has had a stroke (he hadn't) Hospital stay again
April 2022 - Dr's sit us down and tell us they think Archer has refractory epilepsy (drug resistant) and that his seizures will never be controlled by medication alone and that he may need neuro surgery. They also tell us that he has a right hemiplegia, a permanent weakness to the right side of the body
May 2022 - Admitted to hospital for a week long VT EEG (video telemetry EEG) to find out more about where the seizures are coming from. They capture enough seizures after a solid 24 hours of seizures and we go home
May 2022 - It is clear from EEG seizures are originating from the left hemisphere of the brain. Archer is seizing up to 200 times per week by this point, seizures are now considered a major threat to development and a threat to life
June 2022 - Archer is admitted for a 3T MRI under general anaesthetic to take a closer look at the left side of the brain
July 2022 - Dr's can confidently tell us that Archer has extensive cortical dysplasia (malformations) on the left hemisphere of the brain and that his epilepsy is indeed drug resistant. The only option to consider now that "might" work is a left hemispherectomy, where they would completely disconnect the left side of the brain, permanently
August 2022 - We meet the surgical team who talk us through the surgery process. The many, many pros and cons of doing surgery are discussed including a loss of 50% vision on the right side and a more pronounced hemiplegia, pro is an up to 90% chance of seizure control, and the many cons of not doing anything, threat to life is mentioned again. We go home that night and Archer has 10 seizures within just 1 hour. We decide to do the surgery. Surgery is scheduled for 31/8, we pack our lives up then the procedure is cancelled due to a maintenance issue within the hospital
September 2022 - Surgery is completed on 14th September. It is the longest and hardest day of our lives. We are not allowed to have our daughter with us during this time in hospital either - covid restrictions continue to follow us. Archer is in ICU. He has 6 seizures in the 2 days following surgery, Dr's tell us it will likely be due to the trauma from the surgery, we worry the surgery hasn't worked and we have put him through this for nothing. He is initially completely paralysed on the right side of his body. A few days later his leg moves but nothing else on the right side responds. He catches flu in hospital too and is really, really poorly
October 2022 - Moved to a hospital nearer home so that we can take it in turns to be in hospital with Archer and at home with Isobel. Archer is recovering well, receiving intense physical and occupational therapy every day. He is trying to walk but not strong enough.. yet.
November 2022 - We finally leave hospital. Archer is recovering well and hasn't had a seizure since the few days post surgery. He has indeed lost eyesight, too early to formally test but we can tell by how he is carrying himself. He leaves hospital walking, with a splint on his leg as his foot has moved into a dropped position, which is nothing short of miraculous. There is some movement from the right shoulder but nothing else from the arm or hand at this stage
December 2022 - Still home, still no further seizures.
Dr's have advised us they will keep Archer on all meds for at least one year post surgery before reviewing. Occupational and physical therapy are coming to us at home weekly working on strengthening the leg and getting the arm moving. We see movement starting to come from the elbow - wonderful!
Jan 2022 - Continues much like December and we start to see the light at the end of the tunnel and hope more than anything we've ever hoped for that this is the beginning of the end of our epilepsy journey
Feb 2022 - Things are going well yet I am not. Complete and utter physical and mental exhaustion catches up with me, I can't sleep, I can't think, I'm not eating well, I have nothing in the tank. I speak to my own wonderful Doctor, I am diagnosed with PTSD
And that brings us up to date. If you read through all of that then I sincerely thank you for the free therapy! Spilling the worst experience of my entire life was relevant though as it's how my photography business started. In one of my many conversations with my own Doctor she asked me what I enjoyed to do for myself, I couldn't answer at first, I hadn't a clue who I was or what I liked anymore but soon enough the light came back on - photography! I love to take and edit photographs.
"Do that" she said "and do it often" I followed Dr's orders and wow did it feel good to have this escape mechanism, something just for me that wanted nothing back and didn't pose one single threat.
As Archers health continued to improve and I started to enjoy our days again, my mind wandered to the possibility of being able to work again (my floristry work calendar emptied during covid, then of course I was on mat leave and then in and out of hospital so I was never able to get back to work and I could never have left Archer with anyone else anyway given his health) and I didn't feel excited to go back to floristry. I felt like I had taken the business as far as I would have liked to have taken it and was ready for something new.
Was this FINALLY my opportunity to make photography my every day?
YES!
