The light

Everyone has a moment in their lives that has fundamentally changed them, the person they were a few minutes before has gone elsewhere and it has been replaced with a new version of yourself. Some people say it takes a day to change your life, I don’t believe that. A day is too long, everything that happens doesn’t take a day, it seconds ,mere moments and bam everything is different. If that moment hasn’t happened to you yet, it will, it may be scary but it’s not always bad because out of every dark night comes a bright new day should we choose to see it.
My day arrived 13th November 2013 – I remember everything up until a certain point, well about the event anyway and at some points nothing at all. My son had just played football and was about to get in the shower as you do when your hot and sweaty. Everything was normal, why wouldn’t it be?! I started cleaning the front room or something, I don’t actually remember, then I heard a very loud thud. I called my sons name , no answer. So, I called it again. A little unease set in so I knock on the bathroom door, then went in. My son was laying in the bath having a full blown tonic clonic seizure.

Now I have never seen a seizure first hand in my life before, never. I remember thinking he was joking at first , then shear panic then set in. I remember trying to get him out the bath but I could move him, I remember his lips going blue , I remember him not breathing, I remember thinking he was dead. I clearly remember, so very very clearing really remember thinking ‘if he is dead,what am I going to do now, how will I ever survive this’ the answer was simple , I wouldn’t. I could not live in a world that my child didn’t exist. Then I remember not feeling ,something inside of me broke, my emotions switched off and at that moment in time that’s what I needed. He had to survive, somewhere in my mind it registered that my neighbour was a nurse. I argued with myself for a few seconds (it felt like a lifetime) do I leave him now so she can help ? Do I get him breathing? Can I even leave him? Autopilot turned on , I started to think . I had to get him breathing. So I very clumsily gave him mouth to mouth. Went to my neighbours door in panic, pounded so hard I thought I would break it . Thankfully she was in, probably scared that someone was trying to knock down her door, so I started saying It’s me , I need your help. Finally, an adult who was thinking clearly, who knew what to do. She called the ambulance, I spoke to them , she got a blanket , she watched him and started timing his seizure……over five minutes I heard her say. I’m not sure how long I was talking to the call handler, what I can say was he was amazing. I don’t remember the questions that he asked me but he kept me calm, reassured me and waited until the ambulance arrived, now and then he would speak to my neighbour.The emergency responder came , then the ambulance arrived. My son became slightly more coherent, it took a while. He had no memory of what had happened or what all the fuss was. I don’t remember much about the next hour , other than the paramedics were amazing. They took us to hospital, somewhere along the line I phoned my mum and my sons dad. The next thing I remember is my mum and brother arriving at the hospital, leaving the room with my mum and crying , absolutely sobbing. They ran tests, tried to take blood, couldn’t find any veins and ended up taking it from his foot -that was a palaver (he now has a fear of having his bloods taken even though the next time it was a breeze) , his dad arrived and was as supportive as he could be. They took us to a ward about 3am , we tried to get some sleep – shock began to sink in, I couldn’t stop shaking and watching my beautiful son (with scratch marks all up his back where I tried to get him out the bath) sleep. The next 24 hours were full of tests, MRI’s and more tests. I can not fault a single staff member in that hospital or our journey there. We were cleared to go home, the seizure was a one off . He stubbed his toe, the shower was too hot and his body went into shock. Our lives gradually returned to normal, the one off diagnosis didn’t quite sit right with me but we had a follow up arranged in a few months and whatever switched off in me that night, I couldn’t find it again I had changed.

Fast forward a few months, things were getting there. Every bump in the shower or in my sons room would cause me to call out , get up and check but things were relatively normal again. There were a cluster of instances in January the didn’t sit right, he walked into the front room one night dazed, confused and incoherent but he insisted that he had fallen asleep for a little while and had just woken up, just things that put me edge slightly. Then the night came, I was sitting get in my room talking my then boyfriend when I heard a very familiar sound. I told my him to stop talking so I could hear. I cautiously got up to go to my sons room, hoping that he was just snoring (he is known to snore) but I knew at the back of my mind that that was the sound of him choking, I think on his tongue. I knew that sound, it was ingrained in my memory who could ever ever forget that sound. My son was having another tonic clinic seizure, I’m proud to say this time I was more composed , it wasn’t  so much of a shock rather than a time bomb waiting to go off. My son , who had a highsleeper at the time, had nearly killed himself by seizing out the bed, luckily I went into his room before that happened. I knew what to do this time, make him comfortable, time the seizure, talk to him so he knows your there. Do not try to restrict him. I watched for what felt like a lifetime as my sons body jerked and seized although in reality it was less than 4 minutes (no hospital for us this time, we had been told not to unless it was over 5 minutes or serious injury had occurred ). It took another 45 minutes for him to become coherent , and then I lied , I told a barefaced lie to my son. He knew what had happened , I knew what had happened but he couldn’t process it, he was panicking. I told him he had had a night terror , he eventually went back to sleep and I cried again. In the morning I told him the truth , we went to the doctors, his blood pressure was so high that the doctor phoned the hospital immediately, if we couldn’t get his blood pressure down he needed to be admitted. So for half an hour we sat in the waiting room thinking about a beautiful beach until his blood pressure came down -no hospital that day for him, thankfully.
Now what ensued was 3 months of hell, I didn’t sleep , he didn’t sleep we were both scared -I wouldn’t let him sleep with his door closed, we moved his mattress to the floor and in all honesty if I could have made him sleep in my room I would have but obviously I wanted to keep things relatively normal. People kept telling me that we needed to get on with it, and we were but do you know,did they know what it’s like living on a knifes edge between not knowing and diagnosis, between not wanting to sleep because your too scared your child will choke to death and being so exhausted that all you want to do is sleep? People understand to the best they can but some journeys are yours and yours alone. Some people think you should just deal and move on, others understood that to be able to do that a diagnosis was needed. My son became angry , as any scared 10 yr old would, why was he different? why did this happen to him? He also became sad. He had counselling at school, this helped him work through his emotions. He went through a battery of tests, luckily he nearly had a seizure during these tests and I say luckily because epilepsy is hard to diagnose with no seizure. They got to see the type of seizure, they got to diagnose him. I also say luckily because at the time I read an article about a parent who’s son was experiencing exactly the same symptoms as mine. Nocturnal seizures that came out of no where -he died before diagnosis from what can only be presumed as SUDEP (sudden unexpected death in epilepsy ), yes you can die from epilepsy it’s not often talked about and your not told about it but it can happen.I think about that mother and her son often, I’m forever thankful that it wasn’t mine and forever sad for her, that it was hers. Finally he had a diagnosis, finally he was given medication (the doctor allowed him to make an informed choice of which medication he took based the side effects), finally he began to sleep.

My son changed during this period, but not for the worse. I watched my son find courage and strength and express humility way, way beyond his years. I listened to him when we were at a hospital visit tell me that he felt incredible lucky because it could have been so much worse, he could be having seizures every day like another child. I watched him become kinder, more thoughtful, more compassionate – he was always these things but what he went through somehow magnified these attributes. He became more self aware, self reflective -his why me’s turned into try me’s. Through his diagnosis he found himself, the amazing child that he is, his strong sense of humour that could make the sourest of faces crack a smile , the child that will take the last coins out of his pocket to give to a homeless person, the child who will help anyone and sometimes moan about it, the child who wants better for everyone , for the world. The child that never forgets to take his medication , although he forgets to do his homework and answer his phone. My son, the child who feels lucky to be him, to be different. Who despite his adversity is comfortable in his own skin, we have in a huge part him finding rugby to thank for that . My child who unwittingly, by being who he is guided me through my darkest times by just shining his light. My son , the person who when I think of, it  fills my heart with immense pride and my eyes with tears of joy. My child , a child who has epilepsy who has never let this stop him but used it to become more determined , more self assured.

Everyone has that one moment in their lives that changes them, sometimes what follows is daunting , heartbreaking and scary but if your very lucky once you’ve cleared away all the mess you’ll be able to see that the brightest days come from the darkest nights. There is good in everything deemed bad you just need to look a little harder at times.

I feel incredibly lucky. We have an amazing NHS ,who work tirelessy for us. I can’t fault one thing about my sons journey with the NHS, I can only highly praise it and I will continue to do so for every kindness, every supportive word and life saving thing they have ever done for my child.

I’m very lucky , my  life could have been very different , he could have had a bath that night…………….