We did not find out that our son had suspected dwarfism until he was born. I remember those early days so well-being thrust into a new world that I had never thought about before. We knew so little and yet before long we were to become experts about achondroplasia, a word that was new to us and many of our friends and family. There was a 1 in 25,000 chance of us having our son born with achondroplasia. The same chance as anyone else who are parents and do not have a family history of the condition. Our baby was rare, so rare that not all the health professionals that we were to encounter in the early days knew much about the condition.
Achondroplasia was not in our genes, in fact our baby was a result of a genetic mutation that happened at conception. His DNA was known before he began growing in my womb, however medical technology does not pick it up until around 28 weeks on scans. So most children born with the condition are not diagnosed prenatally. Having a baby was not new to us, our first venture into parenthood was the surprise of non identical twin girls. But perhaps an even bigger surprise was our much loved boy. I don’t think I had ever met someone with achondroplasia before. I read that the condition was classed as a disability- another new term in our family. I read so much online in those early days, a lot of which was not helpful to a mum coming to terms with a diagnosis she wasn’t expecting.
I guess the reason why I am writing this today is for other parents who may have found my blog and have also found themselves on a new journey, a road they perhaps had not planned. Coming to terms with a change in trajectory can have its mixture of emotions and initially you may find yourself taking steps forward a day at a time as you readjust to this new place. Many new parents find this poem a helpful explanation.
My journey has moved along steadily from being informed so that I could best care for my child. These guidelines were perhaps the most helpful read in the early days, followed by meeting with a specialist at Great Ormond Street Hospital (GOSH) who reassured me of what medical issues I was to look out for and reminded that I was not to worry but to enjoy my son. In fact after that meeting I never looked back and the joy has been indescribable at times. (Thank-you Dr Wallis)
So the newness continues- our family have made new friends, attended sporting events and social gatherings that we would have never done before. Our respect has grown for geneticists, researchers, bloggers and charities that advocate on behalf of minority concerns. Our eyes have been opened to a new understanding of what life is like for people who have been born with a disability. I have watched videos that explain my son’s condition, and read books that promote understanding of difference. I would highly recommend the story ‘Wonder’ by R.J.Palacio. The word dwarfism is not mentioned once and yet the similarities of seeing through the lens of someone born with a physical difference is powerful for everyone to read.
I for one have become passionate about the language that is used in the media to describe someone with my son’s condition. Educating other people has become a way of life, challenging mindsets of the beauty of difference and valuing each person that you meet has become a new norm for me and my family. Knowing that every person you encounter has a story has taken on a whole new meaning for me. The importance of taking the time to listen, engage and be sensitive to others whose lives and backgrounds are different to my own is a new priority in my life. Above all things my appreciation of kindness is greater than ever before, knowing that a kind word and gesture are perhaps the greatest legacy we can ever leave behind.
Becoming an author was new for me too. Not something I had planned or aspired to, but something that I have enjoyed nevertheless. Telling a story that educates children and their parents about my son’s condition has been a joy. Seeing my own children read the story to their friends, and above all my son owning it as a way of communicating his difference has given me tremendous satisfaction. If you find yourself on a new journey, perhaps an uphill struggle at times. Let me encourage you with these words, ‘often the most challenging journeys lead to the most beautiful destinations’. Don’t lose heart, embrace the new one day at a time and just see how much richer your story will become.
Edition Two of Strong and Mighty Max, seeks to encourage children to value kindness above all other attributes. It encourages young minds to take the time to learn from others and celebrate differences. After all, the world would be a boring place if we all looked the same.