May 1st is that hard day of the year many of us face. Though its eighteen years since Naomi died it still hits you over the back of the head and knocks you sideways.
Naomi loved life and people loved her. In all the time she was with us she rarely complained and if she did it was usually about being uncomfortable, but even when bloated with steroids and movement was difficult the twinkle in the corner of her eye showed she was looking for mischief.
She loved being in Birmingham Children's Hospital and they loved her and cared for the whole family. They never gave up and were, to the end, willing to try anything for us so long as we wanted. In todays "survival" statisics driven culture they stood out like shining beacons. When she was diagnosed we were told survival rates had crossed the 50% threshold, unfortunately we were on the wrong side of the curve, but they continued to look for any edge to improve this and with Naomi having a relatuively rare condition it allowed them to study and learn from this.
At Naomi's funeral I played "Who wants to live forerver" by Queen. A strange choice perhaps but one line says;
"We only have one sweet moment set aside for us"
Naomi's moment lasted beyond the 41 months she lived; it shaped our family and many of the people she came into contact with. She continues to inhabit every day we live; her sweet moment will live forever.
This is why I'm supporting children's cancer charities and in particular Leukaemia & Lymphoma Research, because they are always looking to move that survival rate up 0.1% at a time. For the last eighteen years I've been cycling to beat blood cancer and whilst I'll never be a major fund raiser every penny counts and anything I can do is worth every turn of the pedal.
Naomi would be 21 now and she faced her big challenge head on, I'm 58 tomorrow and it's time I took one on, so see you all in Paris