Book Title: Living with Trisomy 18 / Edwards Syndrome
Your book’s Amazon purchase link:
What is your book about?
A family providing 24-hour high-need and care and support so our wee girl could live life, have fun, and make memories.
What inspired you to write your book?
We were told Melissa’s disability was incompatible with life. However, we had 9 years full of challenge, lots of love, fun, and tears, with many, many achievements.
Can you describe your writing process?
I had kept a diary and documented each day – it took me 7 years to be ready to publish the book, as it is such a personal sharing of day-to-day life.
How did you come to do what you’re doing today?
When Melissa was born, I felt very alone walking an unknown journey with really Melissa as my teacher – so I felt it important to share everything we learnt – hence the book and my website (www.josiemurrell.com). I continue with my photography, reminding busy people of the beauty around us.
Can you describe a typical day in your life?
Housework, connecting with families via the internet, photography, art and crafts, and family time as much as possible.
What do you most enjoy about what you do?
Sharing what we learnt in our experiences with Melissa, supporting and empowering others, and making the most of each day.
Are there any people and/or books that have inspired you along your journey?
Two books that inspired me are Tuesdays with Morrie by Mitch Albom and Changed by a Child by Barbara Gill. I believe the values instilled in me by my parents are what got me through a very difficult time.
Can you share something that people may be surprised to learn about you?
I feel I am a private person and try to hide/manage my feelings, but sharing our story was more important, so I was able to be honest about the difficulty and heartbreak.
What’s next for you?
Hopefully more writing – short stories and poetry, with maybe another book.
Is there anything else you would like to add?
I am just hopeful our experience may support other families. Being in New Zealand at the time described in my book, I felt very alone, as the internet was very new.