AN UNEXPECTED JOURNEY

My name is Janet Chelliah, I started this blog site under the name of ‘JH Blogger’ in March 2020. I am a mum of two daughters, Kirsty and Melissa. I am a doctor in General Practice and I am married to my husband, Neil.

I have been writing my first book for just over a year, and in the last few months I have been working with my Editor and Cover Designer. I am pleased to say that it is almost done. The title is ‘Our Family’s Journey Through Disability and Cancer’ and it has been written to share our family’s experiences in the hope it will help other families who have similar circumstances to us. Our daughter, Kirsty, who is nineteen, has Down Syndrome. She completed treatment for leukaemia in January, 2019. She is a strong and determined young lady who has her future planned. She has the best sense of humour, she is talented, kind, loving, and she has the perfect smile.

Apart from the desire to help other families, I also want to introduce Kirsty. Neil and I are so proud of Kirsty and all of her achievements. In the book I also introduce my youngest daughter Melissa, who is twelve. She is a thoughtful and loving daughter and sister, and she never fails to show resilience. Melissa often confronts life’s challenges in a positive way – she reminds me to keep positive. Together, we are a close family who really made the most of lockdown; we created our own family parties, enjoyed quizzes, created TikTok videos, and played ‘hide and seek’ in the garden.

‘Our Family’s Journey Through Disability and Cancer’ will be released in October and it will be available on Amazon and Ingram Spark. On Amazon, both an eBook and paperback format will be available, and a paperback version on Ingram Spark. Monies from the sales will be donated to CLIC Sargent and Down’s Syndrome Association (DSA). Both of these charities have already read the book, and you will find a review in the introductory pages. Clic Sargent and DSA have both helped our family over the years.

As I write this blog, we find ourselves back to where we were four years ago… almost exactly to the date. This time, a routine blood test told us that Kirsty has leukaemia again. There are no words to describe how we feel. Kirsty has once again been pulled away from her happy and fulfilled life, to a life of being hospitalised and with no control of her life. Kirsty just wants to be home with her family and getting on with the daytime routine that she enjoys; a routine she established herself to keep entertained during lockdown.

Kirsty was due to start her new college in September. Coincidentally, September is also the month for ‘Childhood Cancer Awareness’.

Kirsty has her new timetable, her clothes and face-mask on her desk, all ready to start college. Like any other teenager, Kirsty wants to meet a boy at college, one that she can call her boyfriend. She wants to start working and earning her own money. She wants to see her friends again – especially after shielding throughout this pandemic. She wants to dance again – in her dance schools and not on Zoom. She wants to learn a new saxophone piece. She wants to dye her hair pink.

We are devastated at what has been thrown at her again. She is scared and sad. However, she is still able to find a smile and tell us that she loves us everyday. Despite being sad, our precious daughter doesn’t show anger. She is tired but she never forgets to say ‘please’ and ‘thank you’ to the hospital staff.

COVID-19 is making this journey so much harder for us. Kirsty is now in an adult hospital. She is confined to a room for four to six weeks. She can only see me or my husband, as we each take it in turns to stay with her for three nights. She can’t see her sister, Melissa or any of her other friends. She FaceTimes her friends and other family members daily. We have friends and family who wave to her from the hospital car park on a weekly basis. They can’t see Kirsty, but Kirsty looks forward to seeing them.

Kirsty was shielding from March until the end of July because of COVID-19. Life had just started to get back to some normality, and now she is shielding again but under harder circumstances. She is ill, in hospital and she doesn’t have her family around her. She isn’t in the comfort of her own home or garden. She doesn’t have the energy to do her online singing, dancing , drama or saxophone lessons. She isn’t able to sing and dance, or do her make up and nails every afternoon. She isn’t able to shower herself, dress herself or wear her lovely dresses . Most of all, she misses her family and friends. She misses a good party. We miss the Kirsty we know. Melissa misses her sister. The house is quiet, it’s not how it’s meant to be.

Neil and I were able to protect Kirsty from COVID-19 over the past few months. Now, we are afraid that we have no control over what happens with her health. We do our best to occupy her time in hospital and one of us is with her all the time.

When we got the news about Kirsty’s relapse, I was in the middle of my final edit of the book. I was unsure as to how I should proceed with my book. However, I received a call from a person at CLIC Sargent who had read the book. She felt the book was one that would help others. On this same day, August 20th, Kirsty turned 19. This is what made me decide to go ahead. I want to publish this book for Kirsty, and for the families who have been affected by cancer. I also hope that Kirsty’s determination and strength will inspire those who might be struggling with other difficulties in their life, apart from cancer.

Editing my book and writing this blog while going through this journey again has not been easy. I am heartbroken. However, I know that I need to keep going with this book, whose sales will benefit charities which have been affected by this pandemic. I need to do this for Kirsty. I want to remind her that she can get through this again.

Kirsty’s positive attitude and strength continues to inspire people who know her.

Kirsty is admired and loved by so many. The love she receives from her family and friends will give her the strength to keep going, just as she did before. Thank you to our family and friends, who once again show us love and support.

I would love to hear from you so please feel free to leave a message in the comment box below.

To keep up to date with details of my book, Our Family’s Journey Through Disability and Cancer, please subscribe to my website: http://www.listentomythoughts.com.

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