Love Ella by Madeleine Witham could be described as an easy and quick read but really there is nothing easy at all about reading this book and there's nothing fast to understanding its meaning.

The first time I read Love Ella I cried my way through it; weeping for the hardship, the loss and the aloneness that Madeleine has experienced as a mother of a child with a disability.

The second time I read the book I was angry at the lack of structured and financial support for families with disabled children, the crass and inexcusable insensitivity of others and the low priority disabled children and their families have on the welfare agenda.

By the time I had read Love Ella for the third time, I found more than anything else, wisdom and inspiration and the deep love Madeleine's little girl has brought to her life and vice versa.

Love Ella gives insight into humanity, our capacity for resilience and the deep and rare gift of unconditional love that Madeleine has given to her daughter, Ella.

Love Ella is the story of a young married woman who finds herself having unexpectedly given birth to a disabled child and the impact this has on her life and her family. It is also the story of 11-year-old Ella " a feisty, courageous little girl with Cornelia de Lange Syndrome who is aware of her difference and who holds precious the simple gift of her hands.

The narrative Madeleine constructs has an almost confrontational honesty and rawness about it. There is much human failure to her and her family evident in this book. But the experience of mothering Ella has the effect of making Madeleine a fighter and an advocate for her child as she realises that she, as a mother, is a survivor of a masked and prolonged trauma.

There are no platitudes offered of the privilege of having a disabled child " the reality of dashed hopes, grief, fear and the anxiety of an unknown and uncertain future that a disabled child brings is a wound that won't heal for Madeleine Witham.

As I read this story again and again, I wanted Madeleine to find peace and for the struggle to end or at least be less. But instead there is simply resignation to a relentless reality and a recognition that Ella's future, whatever it holds is also her mother's future and that is how it will and must be.

I have given this book to many people " it is compulsory and powerful reading for anyone who interacts with intellectually disabled children and their parents or represents their interests. There are also deep lessons in this book too for parents of non-disabled children like myself.

Christian and non-Christian readers alike will find that the book holds meaning for them. However for Christian readers, Madeleine's quiet discovery of the presence of Jesus in her life and the deep faith this becomes and how it sustains her is a gift of hope to all of us.

I suspect that it has been very therapeutic for Madeleine Witham to write this book. I'm not sure what the fourth read of Love Ella will hold for me but I do know that the book and its call to be read and re-read has a therapeutic effect on the reader of recognising, knowing and feeling the power of extraordinary love between a mother and daughter despite the greatest of adversities.

Book extract

Ella was born in 1995 with the very rare Cornelia de Lange Syndrome. Love Ella by Madeleine Witham, mother of Ella, tells a powerful and thought-provoking story of the eleven years that follow.

When I went to buy my 11-year-old daughter a birthday card this year, I paused to read all the "to my daughter' cards in the supermarket and realised that I would never find a card with the right words on it to tell my daughter what she means to me. I stand in the crowded noisy store and fight back tears hoping that no-one notices me, and I wonder when the tears are going to stop and the total acceptance is going to start. Acceptance that my baby daughter Ella is like no other: she has an intellectual disability. There are no cards that say happy birthday to my special girl " to celebrate that she is alive, that she is so unique and individual. How different our mother and daughter relationship is in many ways, but at the face of it all our relationship is based on love. And love is enough, it has to be.

The relationship I have with my daughter is complex and all-consuming as is the enormous love I feel for my youngest daughter who is labelled as having "special needs". What I feel for my daughter is the greatest pain and deepest love I have ever felt in my life. This dichotomy greets me in the morning when I wake, sleeps with me as I dream, sits with me as I work and at times is a pain that I experience in a physical sense. Not only do I carry my own pain over loving this little girl and being her mother, but I carry all her pain as well. It is a heavy burden, but it is also a joy that few will ever know. This child has taken away much that I thought I needed, but she has also brought me a great gift " she has taught me the meaning of unconditional love. This doesn't mean it has been an easy lesson to learn.

As we approached the hospital door for Ella's 14th operation in ten years, I could see her panic grow as she had to meet her greatest earthly fear once again: "The going-to-sleep mask'. The interminable wait before the operation and the impossible task of trying to calm the escalating fear of a small afraid child. The gown and the cap and shoe covers. Ella's tummy pressing in and out in anxiety and the complete futility of trying to explain that the pain would make it better. Ella's dread of going to "the sleeping room' where the fear and fight to hold her down and put her to sleep once again is so firmly cemented into her psyche. The dread in the pit of my stomach and the knowledge that we would be spending three or four days in the hospital. Our whole church prayed for Ella and I remember our minister telling me later that he had a message on his computer pop up every five minutes: "pray for Ella'.

I had not been a Christian for very long at this stage and at the time I became a Christian I was at a low point in my life. I was on my knees, literally, trying to cope with the care and stress and worry of looking after this medically unwell and challenging child. The previous five years had taken their toll and the future looked very bleak. I lived in fear and anger, resentment and hate. Fear of the next surgery, fear of the next illness, fear of the next tantrum, fear of just not having the energy or the will to just keep getting on with life and trying to "make the best of it' (a very common piece of advice given to me).

I asked Jesus to forgive me and to be king of my life and I was rescued by His grace alone. I left my fear that had taken over my life so absolutely at the foot of the cross, and by God's grace, became convinced that whatever was to come in my life, and Ella's life, somehow, wonderfully, God would give me the strength I would need to get through it. Only I know what it means for me to call God my father, and the wonderful fact remains that God watched his own son suffer, and he invites us to believe and call him father, a father who understands what it is to suffer. A God who has witnessed all my tears. It gives me great comfort to know that God is with me.

Most importantly this God loves Ella more than I do.  He does not see Ella for all she lacks, but loves her for who she is. This God will welcome this special child as His own, this special child that he entrusted to me as caretaker while she is on this earth. This God will welcome Ella into heaven, and she will get her reward. I will never fully understand why Ella was given to me, but I am willing to trust in God's wisdom. After all, this God, his way is perfect.