It’s sweet to see William laughing and smiling but whenever he gets really giggly for a long period of time it’s a sign he is building up to a big seizure.
He was so happy during this photo shoot but if the pictures had been taken the following day they would have told a very different story. He had a bad night and was so distressed that he ended up with a black eye where he had been punching himself in the face.
William has seizures every night and they are pretty severe. His brain activity is in extreme seizure state which means he never gets any proper refreshing sleep. He is constantly exhausted.
To try and control this he is on the most powerful anti-seizure drug he can have – it is so strong it actually melts plastic. We have to administer it within seconds before it melts the syringe it is in.
Every time he has a bad patch of seizures he loses some of the skills he has gained – last time he lost his ability to sit up. We are always trying to help him move forward with his skills while he is well and in a good place because every step forward we can take means one less step back during those bad times.
When William was born he was breathing but was blue and had low oxygen in his blood. The main arteries of his heart were the wrong way round so although oxygenated blood was getting from his heart to his lungs, it wasn’t reaching the rest of his body, causing his other organs to fail.
He went through emergency surgery at a day old and then open heart surgery a week later – an operation that lasted seven hours.
William was not a happy baby, he cried all the time. By the time he was a year old he still could not sit unsupported and did not use the right side of his body. He was very floppy and bendy, with little control over his movements.
It wasn’t until he was 16 months old that we found out why – some debris from his heart surgery had travelled to his brain causing extensive damage. It was such a terrible blow after everything we had all been through – and there was more to come.
Days before William’s second birthday he had a massive seizure which was the beginning of totally uncontrolled epilepsy with daily seizures - and one of these seizures caused secondary brain damage.
We could not believe it; we were devastated and just kept wondering when it was all going to end. It was so scary. At that point we were so sleep deprived and overwhelmed, we were at breaking point. We lay awake all night, listening out for William, monitoring every heartbeat, every move. No one can relax enough to sleep in those circumstances.
You just get over one awful moment and then the next comes along and you go back to being anxious about the future, terrified you are going to lose your child. It’s like being stuck on a rollercoaster that you can never get off.
We were literally begging for professional help at this point. We spent a year trying to get someone to even assess William and when they finally did, the conclusion was that we were coping very well on our own. It was like some awful joke.
I had heard about Julia’s House, so decided to phone just for some advice. One of the amazing nurses, Alex, came over with a two of the carers and they met us and William. It was totally fantastic because they listened and understood what was happening – and best of all told us they could help. And not just now and again, every week if we wanted it.
When they left, Pete and I both just broke down in tears. Someone was actually going to help. It was one of those pivotal moments.
I can honestly say that Pete and I would not have the relationship we do without the support of Julia’s House.
The first few care sessions we chose to have at home. There was no pressure for me to go, which was lovely because I needed to feel confident about leaving William - he can't tell anyone how he feels or what he needs.
William has a little sister Eleanor now. For a long time I could not think about having another child. I worried about her becoming another carer for William or missing out on things because our focus is on him so much.
We need to watch William all the time because he has no awareness of danger. The bit of the brain that recognises pain isn’t functioning - he doesn’t realise when he has hurt himself or if something he is touching is burning hot.
We found we could never enjoy a proper family day out because we would have to split up, one of us with Eleanor and one with William.
We decided to get round this when the weather is good by having our Julia’s House care for William on the days we are going out. Once a month we go somewhere as a family but William’s nurse and carer come along too. That way we can enjoy a lovely, relaxing day together, knowing there are extra pairs of hands to help care for William.
We’ve taken them swimming, for a walk in the woods – all different places. By using our care session hours this way we have been able to enjoy some quality family time. It’s tempting to just catch up on jobs when we have these sessions but this time together is so precious.
Of course sometimes we will have a session at home. William’s carer Claire is amazing, she always comes prepared for something fun. She might be armed with a dairy-free chocolate cake or some pasta she has made the night before so that she and William can have a messy food session. Claire doesn’t care how messy she gets – and she gets half covered at times!
Pete and I have also enjoyed time to ourselves, too. We’ve taken part in some of the social activities – things like the Julia’s House parents’ party where we had a lovely dinner and a dance together – the sort of things other couples take for granted, but so special for us.
We try not to think about the future and simply celebrate each tiny achievement. William has made phenomenal progress and is trying really hard.
For a long time he couldn’t walk or talk but in the space of less than a year he has been able to stand unsupported and take his first steps – it was very emotional. He has started going to special school and loves chatting to his classmates and making them smile. He is such a sociable boy.
What I love most is coming home from work and having William give me the most wonderful big welcoming smile and hug.
Once a month we go somewhere as a family but William’s nurse and carer come along too. That way we can enjoy a lovely, relaxing day together, knowing there are extra pairs of hands to help care for William.