The shock of a diagnosis – Part 2: Lizzie’s Story

This week I am going to introduce you to my Mum, Liz, to share a bit about herself and her journey from when I was diagnosed with CF. I adore my Mum and at the risk of sounding like a total suck up I am so happy that she is keen to share her story because Mum and I are a team. We go together like birds of a feather! Here she is….

A little bit about Lizzie….

My name is Liz, and I am a very proud mother of two beautiful daughters, Lily 28 years and Maren 27 years. I also have two absolutely beautiful grandchildren, Griffin who is nearly 6 and Sophie Lily just two. I am married to a lovely man Robert, who is step-father to Lily and Maren and is such a wonderful support to our family, we couldn’t imagine life without him.

A little while ago now I mentioned to Lily that she hadn’t written anything on her blog for awhile to which she replied “Mum I don’t always want to think about CF!!!!!” I realized she had probably written as much as she needed to at that time and even if she didn’t write another article the articles she had written were honest, relevant and timeless in her sharing of life with chronic illness.

For quite awhile I have wanted to write about my experience as a mother of a child with CF , but I have found it remarkably difficult to open the door to some of those memories.

How did you find out Lily had Cystic Fibrosis…..?

Lily was born on a hot summers day in Sydney, Australia. A normal pregnancy and birth and I was in absolute seventh heaven. She was beautiful with white wispy hair that defied gravity and the bluest eyes. Her father and I were so proud and happy with our little daughter… life was wonderful. Lily had just started smiling at six weeks when the hospital rang and asked me to come back for another heel prick test (a standard procedure given to newborns to detect certain illness). I wasn’t really concerned because she seemed to be thriving and saw this as an opportunity to show off my beautiful baby. All my family were in Brisbane and I didn’t really know many people in Sydney. So I dressed her in her best dress and off we went. I was absolutely devastated when the pediatrician started talking about testing Lily for this disease called CF, and explaining how serious this was and that if she had it they didn’t know how long she would live … perhaps two years but not much longer that 18 years, the life expectancy at that time. My life would never be the same again. I left the doctors office and walked in a daze for hours…..I realize there is no easy way to tell a parent such terrible news….however I think it was such a shame Lily’s father had not been asked to join me for that appointment as I desperately needed to be supported.

What was your journey after diagnosis?

Having a baby is such a transforming experience I felt like I was a different person, a better person. I couldn’t believe how much I loved this little baby and was feeling very happy. However when Lily was diagnosed I felt intense grief, the tears flowed for months and if I wasn’t crying I felt paralysed with fear and panicky. Though my husband was very loving and supportive I felt so alone, guilty and basically terrified.

But if the lights had gone out for me it was Lily who gradually turned them back on again. As the months went by her little personality and obvious joy for life asserted itself and her father and I were irresistibly taken along for the ride by this little force of nature.

What would you like to say to a parent whose child has just been diagnosed with CF…..

Be kind to yourself. I look back on the young woman/mother I was with such compassion and love. This is the mother whose first reaction was to think “But she’s in her best dress??” I still don’t know what to say about recalling that time, it is very personal, except that with the distance of almost thirty years I see a young mother who really was trying her very best to care for her child, her marriage and herself. I would just like to take that young woman in my arms and give her such a big hug and reassure her that this journey will deepen her sense of life and love in ways she could never have imagined.

The physical care, knowledge and understanding of the treatment relating to CF is very daunting to begin with … but given time, routines are established which will become habit. At this point parents become quite expert at reading their child’s comfort levels and well being. You’re a team. I know over the years I have had to be Lily’s advocate, often I felt very inadequate. In the hospital setting there will be many different people, positions and personalities which can be very intimidating however a parent has the right to have their questions, queries or concerns answered. You have that right. There will usually be someone you feel comfortable talking to perhaps a social worker or CF Co-ordinator, nurse or doctor. Lily has taught me so much in this area, she is a force to be reckoned with as many CF’s are who have been hospitalised for long periods. They know themselves better than many of the staff who are constantly changing around them. Lily remains calm yet speaks her mind. I am often in awe of her in this regard. She is courageous and brave.

I am so grateful for the care Lily has received, we often say how lucky we are that we live in Australia where the best possible care is given to patients regardless of their income. I am especially grateful for nurses who really are like the closest thing to family while in hospital, especially for the little ones.

So there you go, straight from Mum’s fingers! I hope you have enjoyed this post, there is some more from Mum to come so stay tuned. And if you have any questions for either myself or my lovely Mum than please feel free to email us or leave a comment below and we will reply quick as a flash!

Lx