24th December is the anniversary of our founder's death - an open letter to Sebastian is shared with all who know and love our charity:
In the early hours of Christmas Eve twelve years ago we shared our last, most precious moments together as a family of four. It was, without doubt, our saddest and most difficult time as we knew our lives would go on with you in our hearts but not at our sides and that a lifetime of missing you was to follow.
That bottomless, life changing sense of loss has never left us. It would have been so easy to allow bitterness and regret to consume us along with the physical pain of our separation but through your actions and inspiration you helped us to find a different, more positive path that would sustain us through the darkest of days that followed.
Over the years so many have marvelled about the foresight and maturity of a little boy who could launch an incredible wish, thinking only of others, when his own life was rapidly drawing to a close. We are the lucky ones, who remember with such fondness the wonderful seven years preceding initial diagnosis, as well as the qualities you demonstrated throughout times of adversity - your love of life itself and ability to remain so resolute, never complaining, asking 'why me?' or thinking of what your illness took from you.
Your Daddy, Becca (sister), and I have often speculated on what private thoughts you must have had in the months before you took your final breath; until the very end you remained so determined to beat your cancer and yet on reflection it is evident you were acutely aware of your mortality and the diminishing chances of recovery, even though you chose not to articulate such thoughts aloud, no doubt for fear of upsetting us. When you so painstakingly printed out a quote from your much loved copy of Lord of the Rings, " all we must decide is what to do with the time given to us", which you gave me for safekeeping, you set us on a journey that has taken us from the depths of personal loss to the bittersweet exhilaration of fulfilling your last wish, knowing you were willing us on through every arduous twist and turn of a seemingly never ending road.
That quote is now etched on our hearts; it is the cornerstone upon which your charity was founded and which is now proudly perpetuated by our ever evolving 'Family of Families'. When we set out to achieve what we now know as The Bluebells, the place you envisaged that would give other families the opportunity to build precious memories in spite of an uncertain future, we thought our mission was to create a physical building- but that was the (relatively) easy part. The bricks and mortar may be aesthetically pleasing and provide the space for memories to be captured but what is infinitely more important are the bonds that have been created between our families, our team, our volunteers, our supporters and our sponsors. Together, we are a blended family, walking together through the good days, the bad days and the very darkest of days. The actions of the Trust touch lives in so many ways beyond providing family respite breaks and our services will continue to evolve in response to need and listening to those we are here to support.
Today, and every day, we give thanks for the gift of life that brought you to us for the most exquisite nine years and ten months. We will always be a family of four, but you are also the guiding light of a much bigger family that transcends two worlds; those here that your charity can hold and support and the beloved butterflies that flutter freely, devoid of illness and disability, with you.
Fly fearlessly our precious son, you are with us always, with unending love, Mummy, Daddy and Becca xxxx