Alphabet of Hope

We produced this beautiful Alphabet of Hope with insights and reflections from families affected by retinoblastoma around the world.  The Alphabet was originally created in 2012 for the first One Retinoblastoma World meeting in London.

Every 2 weeks throughout 2018, we shared via social media a different word and accompanying thought from the Alphabet.  We hope you enjoy this video showcasing the complete Alphabet and all the images shared throughout the year.

A full text version of the alphabet can be found directly below the video.

Action is eloquence said Shakespeare.  Reach out today and hug your child, touch the world, contribute to the fabric of hope that brings life itself to those most in need across the globe.

Baby face, you light up my world, showing me the way forward.  Courage and peace flow through the tips of your fingers, flooding my entire being as your tiny hand clasps mine with complete trust and love.

Cancer has been my violent awakening to the fragility and beauty of life, I will never again let the day pass without appreciation for it, and for the people who bless my path through it.

Dying is a part of life. Even In her last days on this earth, I was able to help my child smile and embrace life.  In those minutes and hours together, we touched heaven and I rediscovered the meaning of love.

Exams Under Anaesthetic – I have lost count of them.  Some good, some bad, always stressful for all of us, but I am reminded that so long as we have EUAs, our children are alive, and life will be good again one day very soon.

Family and friends have been my saving grace.  They have been with me every step of the way.  They are my comfort and encouragement, sounding board, researcher and objective assessor, confidante and constant safe harbour.

Grief has been my pathway to healing.  I mourned the loss of my child’s eye for a long time.  Part of my hope for his life was removed along with it.  Grieving has helped me find peace, and the realisation that life can be normal even with only one seeing eye.

Hugs bring me comfort, security, reassurance.  Your silent expression of love heals my broken spirit and floods me with peace.  Please hug me often!

Imagine life after treatment.  This is my escape from present distress, from the minutiae of our sterile home on the oncology floor.  I dream of watching my child make mud pies In the sun, and I know all will be well.

Joy in the love and concern that others show.  Joy in knowing this present sorrow will not endure forever.  Joy for each child whose life or sight is saved.   Joy that cure is possible for all children with simple action.

Knowledge gives me strength.  When I know the routine or the possibilities I can be prepared and prepare my child.  When I know the benefits and risks, I can make decisions.  When I know I am not alone, I have courage and hope.

Love without boundaries, without fear or regret.  Be generous with your time.  Speak silent words of love with your comforting hugs.  No darkness will destroy me when love keeps my candle of hope alight.

Memories allow me to keep those I love beside me wherever I go.  You are just a thought away.  The joy of your presence in my heart helps me put one foot in front of the other.  Today I will smile for you.

Now is the time to be happy, to smile and enjoy life.  Yesterday has taken away her troubles, and tomorrow may not arrive.  All we ever have is this moment in time – make the most of it.

Overcoming cancer is our deepest desire, our journey and destination.  Chemo, radiation, surgery, prayer, love, courage, patience, even grief.  We will overcome!

Photos saved my child’s life.  Even though I mourn the loss of his beautiful eye, I thank God every day that he is still with me, cancer free and a delightful rogue.

Quiet time to reflect, process, think and be still.  To breathe deeply and fill my lungs with healing fresh air.  To find peace in this moment and know it is enough to sustain me.  To be engulfed by calm, cleansed and rejuvenated by rest.

Rollercoaster riding in the dark – that is what this experience is like.  One moment we are flying high and the next we plummet into the depths as new tumours appear.  I can’t see where we are heading.  My only comfort is that I am not riding this coaster alone.

Surgery has terrified us and been our salvation.  Signing the consent form is the hardest thing I have ever done, yet even though we had to remove both your eyes, I am thankful for these surgeries because they saved your life and the cancer is no more.

Therapy is hope itself – the possibility of cure or relief of suffering.  I cannot imagine experiencing retinoblastoma without the hope of treatment and emotional support.  We are truly blessed.

United in the quest to bring hope to every child with retinoblastoma.  Hope is not about who or what is first, best, strongest, richest, most well known or exciting.  Hope is the quiet joining together of many hands, hearts and minds in patient collaborative effort to provide the very best care possible..

Vision is more than opening my eyes.  Children blinded by this cancer have so much vision, more than many of us sighted people who spend too much time looking at the world and not really seeing.  I try to close my eyes at some point each day and find that capacity for vision inside myself.

Wisdom – so much wisdom I need on this journey.  Far more than my 22 brief and sheltered years have amassed.  I can only pray for God to show me the way, and for open eyes, ears and heart to receive His reply.  God grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.

Xylophone – your little fist tightly gripping the stick as you contemplate this new gift.  Gently tapping, then enthusiastically banging the brightly coloured metal keys.  After an hour, the sound drives me crazy, but your play is music to my ears – today is a good day!

Yellow is the colour of the sun, of gold.  Some say it is the colour of cowardice – I say it is the colour of courage and hope.  Hope for sunshine and smiles, hope that suffering and death will be conquered by our Gold Ribbon Army, hope for a better tomorrow.  May we all be shining white petals of support around Daisy’s sunny, hopeful heart.

Zeal to fight back!  I am angry that I did not know about the simple sign of white pupil.  I am outraged that my child is one of less than 20% worldwide who survive.  I commit my indignant energy to the collective building of a better future for all children and families.