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by Grace McKenzie (Author)
All proceeds from the sale of this book will be donated equally between the Cystic Fibrosis Trust and The Butterfly Trust.When you were five days old, you had a routine heel prick test and we thought nothing of it. A couple of busy weeks later, I received an unexpected phone call. We were to attend the hospital for further investigations. That phone call brought with it some devastating news. You - our precious baby, our baby that we had waited so long for - had cystic fibrosis. Cystic Fibrosis. Daddy and I didn't even know that we were carriers of the faulty gene, in fact we knew very little about the condition at all. Our beautiful, perfect little son! What had we done to you? Reeling from the shock and grief, we struggled at first to accept this new reality. Nothing made sense anymore, everything had changed. With so much to take on board, so much to learn and understand in a short space of time, we felt completely overwhelmed. Until we realised that not everything had changed. In fact, nothing much had changed at all. You were still our wonderful, amazing, funny, charming, loving, smiling, happy, uplifting little boy. Now we just had to learn how to deal with this diagnosis and protect your health as you grew up. This is the story of our journey together as a family so far. Our journey through the grieving process and out the other side to acceptance and the embracing of life itself. Along the way we have learnt so much about cystic fibrosis; we have learnt how it affects those with the condition, their life's challenges and their potential life expectancy. But we have chosen to focus our energies on the positives, and on hope. Hope in the scientists and researchers who are working hard on more targeted treatments for CF. Hope for a cure. Hope for your future. But, above all of that, we focus on you. You are the centre of our universe and in everything we do, we think of you first. Through you, our eyes are now open to the fact that all living things will die. We are mortal. We will die. Every last one of us. And no-one knows when. Of course we already knew that, but now we embrace it and we feel liberated. We are aware. We are no longer sleepwalking through our own lives. It is a good thing; a positive thing. And this is a positive story. Even bad news has a silver lining, and you are our silver lining. We will have a wonderful journey together, whatever it may bring. Life is a game, let's enjoy it!We could never have been prepared for this diagnosis to happen to us, but know this: we love you with all our hearts and we would not change you for the world. Of course, if we could take CF away from you, we would. But we can't. Let's hope and pray that the scientists can. And in the meantime, we will live life to the fullest and take nothing for granted, because life is precious and we have been gifted that fresh awareness through you. You are only two years old, yet you have already taught us so much. You are teaching us fresh approaches to, and perspectives on, life. Take chances! Experience everything! Don't be so serious - laugh and laugh hard. It's Just Our New Normal is the story of how we are blossoming as a family; taking the best care of you that we can and then putting cystic fibrosis to the back of our minds so that we can enjoy our day together. I hope that anyone facing a similar diagnosis may find some comfort in my words. We don't know what the future holds, but we have today. And today is good.
