There he was, our little boy, lying unresponsive on the bathroom floor. Colour drained from his face, eyes vacant… a parent’s worst nightmare.
THAT was the moment.
THAT moment will be etched into my brain forever and yet it was an otherwise, ordinary moment. A bath with his sister.
THAT moment was not meant to end up THIS way.
THAT moment was the start of all the interruptions since.
Our ordinary lives now touched by the OUT of the ordinary and no day will ever return to an ‘everyday’ as our life had been.
It's been a year today since THAT moment and so much has happened. Unfortunately he still does not have seizure control and trialling different treatment options every few months means a variety of side effects have come his way BUT our resilient little boy has done SO well.
One year on is a poignant day and one with a lot of emotion but also one with a lot of joy.
One year on I am starting the prelaunch for a business that has come from turning the pain of the last year into a new purpose. A purpose to help my son and other children who struggle with big emotions, a purpose to help overwhelmed parents and a purpose to be the change I want to see in the world.
If you want to be part of that change, the change that sees our children as a whole person, more than just the results they achieve. If you want to look after the mental wellbeing of our children then I would love you to follow along here and here and grab my freebie here.
A Box Full of Joy for children is just the beginning, there will be online courses, there will be boxes for adults and teens. Let's look out for each other and show kindness and compassion always.
So after the first seizure two weeks later S had a two seizures in quick succession so he got taken in to hospital. The faint hope we were given that the first one could have just been a random occurrence had vanished and we were sat watching and waiting for answers.
Over his time in hospital he had an MRI and an EEG and they were able to diagnose him with focal epilepsy after seeing constant abnormal brain activity in the left temporal region of his brain. This made sense with the right side of his body being affected in all of his seizures with some stiffness and in the initial one some shaking. We were fortunate that we got the diagnosis so quickly and a follow up appointment was booked to discuss the route forward as well as a 48 hour EEG too.
We left the hospital a few days later faced with our 'new normal' and with a million questions spinning round in our head!
Our 'new normal' was overwhelming, it was scary, it was all the things I didn't want to have to face as a parent.
I didn't want my son to be in constant danger,
I didn't want my son to have to deal with his 'abnormal bran activity' in his every day life.
I spent hours and hours trawling the internet, looking for answers, researching and trying to find someone who understood what we were going through!
All I could do was pray and wait for the next appointment.
As a parent you want to do everything you can to protect your child from harm or hurt but at that moment, after that diagnosis, I felt helpless...
Let's go back to July 2020, our boy, S, had turned 4 the month before and after the craziness of lockdown times restrictions were easing and we had been enjoying some time with family and friends.
A normal day, a normal activity...interrupted. S was having a bath with our 1 year old daughter C and the unexpected happened. S has never really liked the bath but he was actually enjoying being in there with his sister, then suddenly he was quiet, his colour drained from his face and he was staring and unresponsive. My husband quickly removed him from the bath and we put him in the recovery position. I was panicking, we were trying to get him to respond but he wasn't.
The only other time I had seen the blueness that I saw in his face was when I saw my Grandad shortly after he had died.
I got C out of the bath and called 999. Seconds felt like minutes, minutes like hours, he was still unresponsive and rigid for about 3 minutes, 3 minutes may not sound like long but for me it felt like a lifetime. Seeing your son like that and not being able to do anything about it is scary, you feel totally and utterly helpless.
He came round confused and said he wanted to sleep. We carried him to bed and he was out like a light, that never normally happens, he's a 3 books and lots of songs kind of routine boy before bed! I just stayed with him, staring, making sure he was breathing.
Needless to say that moment, that unexpected seizure, was the start of many months of watching his every move and being on constant high alert, a state of fight or flight every moment of every day. When I'm with him I'm watching him, when I'm not I'm waiting for the phone to ring.
I'm writing this to help me process how our lives have changed since July, to raise awareness of the wide reaching impact of epilepsy and to hopefully help others to know they are not alone.
