Eulogy for Leon

by Alison Lister

Perhaps you are thinking today what a difficult hand of cards Leon was dealt. He was. But he also had a couple of aces up his sleeve. He was born into just the right family. They couldn't see his disability even when it was pointed out to them. And his mother was superhuman. It was the best start in life any child could wish for.

From experience I can tell you this. When a child is born with any disadvantage, it is up to the parents to decide whether this will be a positive or negative experience for the family. Linda and Joe so charged Leon with positive energy on his first, momentous day, that he literally ran everywhere for the rest of his life, even though doctors thought he might not walk. Unconditional love has a very high octane rating.

I always found being with Leon very moving and inspiring, even though I have my own very special child. He seemed to have digested the music he loved, instead of merely listening to it. Bob Marley sang, 'If you know what life is worth, you will look for yours on earth,' and Leon lived it. No scholar in the land knew the meaning of Carpe Diem better than Leon. He seized every single second of his life, never mind the day. Perhaps he knew he was on a mission here and some day soon would have to return.

Leon was the gentlest, sweetest child I have ever known. Wherever he went he created a harmonious atmosphere - a perfect world. I used to try and swap him for my son, whenever Linda wasn't looking, but she always noticed and grabbed him back pronto. You couldn't know Leon without wanting to know more about him. His eyes were beautiful and fascinating. He was always thinking an interesting thought. You could see that sometimes he was plotting something wicked or trying to make a bid for freedom.

A bid for freedom. So much of his life was spent in a bid for freedom. For what are disabled rights but human rights? How many years have we stood shoulder to shoulder, Linda, preparing to fight using good laws, only to watch them turn in our hands to disposable scraps of paper? We were forced to slave over law books when we could have been playing with our children. How you remained so dignified and reasonable ? particularly when you were a solicitor yourself - I cannot imagine.

Another solicitor, Nelson Mandela, said this, 'There can be no keener revelation of a society's soul than the way in which it treats its children'. There is nothing I need add to that today.

In happy contrast, I would like to thank everyone who worked so hard to ease Leon's path in life. Thank you all so much for your devotion to Leon and for coming here today to support Joe, Linda and Tara. They are going to need you now more than ever before. It will not be easy, or even possible to fill the void in their life left by this remarkable young man. He has changed us all forever.

Dr David Curnock, Leon's paediatric special needs consultant, wrote this to Linda earlier in the week: 'It was a very sad shock to learn of Leon's death on Thursday and I want to write - both to say what a special person I feel Leon was (and with a lovely wry sense of humour) - and also to tell you of my admiration for the wonderful way you looked after Leon, with all the family playing their part. Many of us here will join you in missing Leon, but for yourselves it must be so hard' Dr Curnock, thank you so much for this very kind acknowledgement. Linda viewed caring for Leon as a special privilege, not a duty, and now we know, so did you. You can have no idea how much this kind note and all the similar messages this week have meant to my friends at this time.

Linda, your devotion to Leon has been beyond any ordinary definition of mother love. You made Leon a promise the day he was born, and you kept it until the day he died. You went to the ends of the earth for him, sometimes quite literally, to find any way to ease his suffering even for a second. As a mother I thank you from the bottom of my heart. You helped Leon leave his giant footprints in archives all over the world, a legacy that may transform one day the life of another child dealt that difficult first hand of cards.

When we talked on the day Leon died you said you were surprised to discover what you felt. You said in the midst of turmoil, already his memory made you calm. For so perfect was Leon and so beautiful his soul that you couldn't sustain the harmful emotions - you could only feel joy.

Linda, you asked me to come here today and talk about, and I quote, "motherhood, life, the universe, and everything." The only one I know is motherhood. Trying to find the meaning makes me speechless. Instead, can I can just share with everyone a few observations from the past week:

Everyone I have spoken to compared Leon to a philosopher, ambassador or statesman at some point in the conversation. Not bad for a little boy who never spoke.

And I picked up a card of condolence today that drew upon the words of Bishop Desmond Tutu for comfort. There've been no tiny poems.

And when you rang me up to tell me the devastating news on that sunny Thursday morning, you used the words of one of the greatest men in history. Another son with a life cut short. You said:

"Free at last, free at last, thank God, he's free at last."