30.03.2000 – 30.08.2019

This is a beautiful but heart breaking piece written by our Secretary Bev about her son Chris, forever 19.

By Beverley High

^{You’re gone’, is the thought I have before I open my eyes, tears stinging the back of my eyelids.  Often before the first light of dawn comes through the curtains.  A quietness pervades where I live that was never there when you were alive.} 

^{Even now nearly 6 years later ‘you’re gone’ is one of the first thoughts I have each and every morning.  6 years since you died Suddenly, Unexpectedly, without warning from SUDEP (Sudden Unexpected Death in Epilepsy).  You went to bed the night after an online gaming session with your mates.  I heard you go into the bathroom in the early hours of the morning of 30th August, gently humming to yourself, to brush your teeth.  I remember thinking it must have been a good D&D session and I’d ask you about it in the morning.  But I never had the chance because somewhere onwards from 1.37am that morning a seizure took your life and took you from us.}

^{Chris you were an ‘old’ and gentle soul.  You always seem far older than your tender years.  We were walking around town one day when you were about 4 years old.  I was holding your hand and I could see you were getting a bit tired so we started to head back to the car.  You announced loudly that you had ‘old legs’ which prompted an elderly lady to smile sweetly at you and say, ‘so have I dear’.} 

^{As you grew up you  despaired of my skills in new technologies and felt it was necessary to speak very slowly when explaining these things to me! I know I drove you to distraction on occasions and made you groan out loud sometimes, and your favourite phrases to me were ‘What is wrong with you?” and “Why are you like this?”.  I always looked to see the expression on you face and I could see a smile dance across your face.}

^{You were a thoughtful, sensitive child, who always wanted to get things right and you would get upset if something went wrong.  As you grew up, this wish to get things right, to get things perfect grew into an obsession.  This obsession was triggered mainly if it was something that really interested you. You never really did things by half once you were invested in something.}

^{During your life you made good friends and were loyal to them.  The friends you made in school remain close to me and I am grateful every day for their connection and ongoing support.}

^{I remember James saying that one time he’d asked you for a few tips to get round a tricky point in a game.  You sent James a 54-page guide!  You were Dungeon Master for many of the D&D games with your friends.  You would spent hours, planning campaigns, writing stories and drawing maps. One of your maps is interred with you at your resting place, along with 14 rosewood D&D dice.} 

^{You were a healthy child, never having more than the usual colds and sniffles.  The same in your teenage years.  This is why it was such a shock when you were diagnosed with epilepsy.  You had your first seizure on 20th January 2016, when you were 15 years old.  I was woken by a howl and rushed into your room to find you having a full-blown seizure.  I remember following the ambulance to the local hospital in the early hours of the morning, down the dark twisty country lanes.  The ambulance drove quite fast and I had my foot down pushing my little car as hard as I could, desperately wanting to keep the ambulance and you in sight.  I felt so sick with worry.}

^{In the hospital I could see you were frightened and scared by what had just happened.  When you got up to move around I offered you my shoulders and put my arm around you. You pulled me tight and I hugged you back. Your next seizure was in September of the same year when you were 16.  This seizure was also a nocturnal tonic clonic.}

^{Several months later you had an appointment at neurology at the local hospital.  We left there with a medication prescription and the website address of the epilepsy society.  You struggled with the side effects of the medication and we quickly discovered that was little to no support in the community for your epilepsy.}

^{When you were seen by the neurologist he prescribed new medication but there was no other support or guidance offered.  When we returned a few months later and discussed what you had experienced with the side effects of medication.  You mentioned that you had stopped the meds as you hadn’t been able to concentrate on your A Levels.   The neurologist then discharged you from the service without any ongoing care or support.  We had been given no information and not one person had informed us of the dangers of epilepsy.}

^{I went on an epilepsy management course run by a local epilepsy charity for parents, as I felt that the information from the healthcare professionals was dismal and severely lacking.  From the time of your first seizure until your last, not one professional ever mentioned that your nocturnal tonic clonic seizures put you at high risk of SUDEP.  Not even the charity who was running the course suggested that I refer back to the neurologist to discuss the risk of SUDEP.    This was particularly unforgiveable as the charity had young people resident onsite with severe epilepsy and other needs.  Sadly these young people did sometimes die from SUDEP on the charity’s premises.}

^{Your taste music was eclectic to say the least, absolutely loving anime and gaming music.  It was the big dramatic music that you loved.  At your funeral you were carried into the chapel to music from your favourite anime, Code Geass. You never knew about contemporary music; it just didn’t interest you.  One time, all your friends were in the car and Queen’s ‘Don’t Stop Me Now’ came on the radio.   You never normally knew the songs other people were listening to, but you did know this one and joined in singing along with gusto,.  This was played at your funeral after James had read his tribute.}

^{This part of James’s speech at your funeral captured you well.  ‘Chris had more than his fair share of downfalls. But it was how he acted in his toughest moments that allowed his considerate nature to shine through. If any of his friends had fallen upon tough times, he was always there to lend thoughtful advice. If we had a problem we didn’t know how to solve, he’d spend hours trying to find a solution. Even if we just needed to vent about something, no matter how important, he was always there to listen, even if he himself was struggling with problems far greater. I always admired his selflessness and resilience in the face of bad times which he didn’t deserve.’  In about 2018 you set up an online group chat for all your mates to join so you all could talk about your problems and try to offer each other support.} 

^{One of the saddest things is you were about to head out into the world to truly know some real independence.  You had just been accepted at University of Sussex (US) to study for a degree in psychology.  All your hard work had paid off.  You knew you had been accepted but you never got to see your acceptance letter as it arrived the Monday after you died.  You never got to see US.  I had arranged for us to travel down to Falmer by train on the 31st August, to visit US and then I’d booked an apartment that overlooked Brighton Marina.  In the Marina was a plethora of your favourite restaurants.  I was going to take you out that evening and treat you to a meal and a beer and we were going to do a little bit of exploring in Brighton.  You never made this trip because SUDEP had taken your life the day before.}

^{Like many of us bereaved by SUDEP I now live without my child (my only child).  Although you were an adult, you will always be my child.  There is such a gaping hole in my heart and life that will never be filled. Not only this I carry the huge weight of your loss.  A loss that I know that time will never dimmish.  Alongside this is the guilt that I didn’t protect you and that I didn’t do more to try and keep you safe from SUDEP. This is because no professional ever told me you were at risk from SUDEP.} 

^{Your loss has left a world where happiness never intrudes and one that is devoid of colour.  Where Christmas no longer exists and days of celebration such as my birthday and Mother’s Day are merely more battle grounds of pain to get through. Your mates and I still celebrate your birthday.  I make the cake you all loved and we sing Happy Birthday to you still, secretly hoping that this will reach you, wherever you are.  We desperately cling onto any of the tiny parts of you that remain.}

^{If there was a higher power I could have gone to and begged to swop, I would have done so without a moment’s hesitation.  I would have argued fervently that you should stay and I should go.  But I didn’t have that power, I wasn’t given that choice.} 

^{Our motto was always ‘you’re not alone and we stand together in this shoulder to shoulder’. I know without a shadow of a doubt you gave me far more than I ever gave you. You were an inspirational young man who enriched my life beyond anything I could have achieved myself. Most of all you were my son, my best friend and someone I loved without measure.  You were and still are the best part of me.  I thank you from the depths of my soul for being my son.  I truly believe there will a day when we will meet again and finally everything will be as it should be.}  

^{For all those mums who cry before dawn……}