Good afternoon and welcome to the Epilepsy Foundation's
Virtual Memorial Service for 2021. My name is Brendan Lilywhite
and I'm honored to be with you today. We gather
virtually to remember and celebrate our loved ones, to
reflect on cherished memories, and to seek comfort in our
community. I hope today's service brings you some peace
in these trying times.
In the grey summer garden, I shall find you, With daybreak
and the morning hills behind you. There will be rain-wet
roses stir of wings and down the wood, a thrush that wakes
and sings. Not from the past you'll come. but from that deep
where beauty murmurs to the soul asleep. And I shall know
the sense of life. Born from dreams into the mystery of
morn where gloom and brightness meet and standing
there till that calm song is done, at last, we'll share the league-spread
quiring symphonies that are Joy in the world and peace and
dawn's one star.
Hello, my name is Derek Jones and it is good to be with you
today. I am an Anglican minister and like you, I have
encountered loss and grief that comes with the illness and
death of loved ones. The mantra of the Epilepsy Foundation is
no one with epilepsy should go it alone. My message to you
today is quite simply that you are not alone. I want to share
with you some words from two songs. The first is You'll
Never Walk Alone, the theme song of the Liverpool Football
Club from the musical Carousel and made popular by Jerry and
the Pacemakers in 1963. When you walk through a storm, hold
your head up high and don't be afraid of the dark, walk on with
hope in your heart and you'll never walk alone. And then
Bridge Over Troubled Waters recorded by Simon and Garfunkel
in 1969. When you're weary, feeling small, When tears are in
your eyes, I'll dry them all. I'm on your side when evening
falls so hard, I will comfort you. I'll take your path like a
bridge over troubled water. I will lay me down. These words
speak powerfully to us about comfort and solace in times of
pain and stress, especially when we experience loss. More
importantly, they speak about sharing that pain. Someone who
has experienced that said recently in one of our
newspapers, having someone to talk to and offload to is
really really important. To be able to say I'm having a bad
day made a huge difference. The real raw pain that comes with
separation never really goes away. It is true that if we
didn't love so much, we wouldn't grieve so much. The
old saying time heals is only partly true because time never
fills the gaps. But it is when the pain is shared, when you
allow someone to share it that restoration and peace is
possible. And that is where the bridge over troubled water
kicks in. When we can be sure that no matter what happens or
how we feel, we'll never walk alone. May God bless you in
your loving and your grieving and remember when you're
feeling that you're at the end of your tether, It's good to
know that there's someone hanging on to the other end.
In Italian Lucia means light, my daughter, Lucia was a beautiful
young vibrant girl who certainly lived up to her name.
She was the sort of person who made you feel good to be around
and when she entered the room, she'd light it up with her
presence. She was a fun cheeky teenager who adored music and
she was always dancing. She had a real spark for life and
enjoyed being with friends, having a laugh and playing with
her two beloved dogs, and her family and friends just adored
her. She was known for her caring nature and she was
always willing to help others. Her intelligence was recognised
with a school scholarship and she was good at painting, sport,
maths and English. She loved playing sport and was part of
the local swimming squad. For several years when she was in
sunlight, her eyes and head would shake. The medical
professionals were not concerned at all and she hadn't
been diagnosed with epilepsy. Following a difficult time at
school when she was being bullied, Lucia had a grand mal
seizure at the end of March last year. A week later on the
4th of April 2020, she died tragically from Sudden
Unexpected Death in Epilepsy. She was only 2 weeks shy of
turning fourteen and had been really excited about getting
her Apple iPods for her birthday. Lucia was my only child and the
absolute love of my life. We had an extremely close bond and
she was my best friend and my absolute favourite person in the world,
I feel truly blessed to be her mum. People often called her my
"mini-me" because we looked alike and often acted the same. We
love to laugh and muck around together. Like me. she had a
crazy sense of humor and we really had a lot of fun
together and for this, I'm so very grateful. I don't know how
I've survived 13 months without her. I'll never get over the
agony of losing my beautiful child. The world seems empty now. I miss
her more than life and I love her more than I ever knew
possible. However, I keep going because I know that she would
want me to. By continuing on. I can continue to love and honour
her. Lucia was an extremely passionate, loving soul and
would want to help others to prevent them from losing their
lives to SUDEP. So in her honor, I will continue to advocate and
raise awareness around SUDEP, and hopefully reduce the risks.
Because Lucia's 13 years and 11 months are important and her
light touched many people's hearts. And if there's one thing
that Lucia taught me, it's that love really is stronger than death
and love never dies. If you have a candle with you now,
please join me in lighting it.