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Rachel’s story

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Rachel writes about her second child, Nicola, who was born twenty months after her first daughter.

None of my previous experience could possibly have prepared me for Nicola’s birth. She came into this world … just! Distressed doesn’t even come close to what we all went through. My prayer was “Lord, let me keep her. Please let her live.”

It was all I could think as my dreams of a ‘normal’ family life fizzled away in the early days of her life on the neonatal unit. There was confusion, secrecy, and coded messages between the staff, who all knew that her existence was going to be hard, but I clung to my prayer. We came home after six of the scariest weeks of my life. That was then.

Now I have four children and I love them all dearly. I could not have a more diverse family if I tried: two girls, Hannah and Nicola, followed by two boys, Jacob and Luke. Nicola was given a diagnosis of cerebral palsy when she was under two. From then on, we realised that we all needed to understand and learn to live with her life-long disability.

Nicola is unable to walk or talk and neither is she able to see. She is now fed by a tube attached to her stomach.

Nicola is absolutely perfect in our eyes, beautiful and precious.

Nicola is absolutely perfect in our eyes, beautiful and precious. She is a bright child trapped in a body that will not work for her. I am saddened for the things she cannot do, but I really rejoice because she has enabled us to enter a different world. Our eyes have been opened and we see her and others with difficulties in a new light.

Love is not dependent on how able we are to perform, behave or participate. It doesn’t need us to make a grade before we can feel it, or deserve it because of anything we have done. Love just ‘is’ – regardless of our physical or mental health.

Nicola’s middle name is Hope. It’s a great reminder to me about what I believe for the future. Life with its joys and pains, its expectations and sometimes disappointments, is a temporary place. I can live life to the full and celebrate the lives of my children because I have a hope for my future and theirs.

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