Our New Normal – Lisa’s Story

Words can’t express how hearing my children laugh makes me feel – sometimes I could burst! Having the craziest of conversations with them and seeing the love and compassion between my two children – just 16 months apart – are my greatest joys of motherhood.

I went through three rounds of IUI, then two rounds of IVF to have my son, Ben. The treatment was harsh and painful at times. After each negative pregnancy test thoughts of never being a mother consumed my mind, day in, day out. I prayed to every God and cried myself to sleep so many nights. My need to be mum was so powerful, yet I felt powerless. I tried everything to have the perfect healthy body so it would work but it was out of my hands. Then the finally day came.  I received the phone call informing me that I was pregnant. I was so happy I thought I would burst and I wanted everyone to know! Shortly after the celebrations scans were booked and all I wanted was a healthy baby. Nine months is a long time to wait to hold and your baby and when I held my son, Ben, in my arms for the first time I felt raw, deep and unconditional love, followed by fierce protectiveness.

Little Tsunami - Thumbs up for Abi
“Nine months is a long time to wait to hold and your baby.” Lisa with her son Ben. Image supplied.

Our daughter Abi was conceived after one round of IVF. She was born 5 weeks 4 days early and proved she was a fighter since her first breath. Her doctors were concerned she’d need assistance breathing at birth, but she didn’t. Abi and I spent a month in hospital trying to build her weight until we were finally allowed to come home.  Then, at seven months old, Abi was diagnosed with Spherocytosis, a type of blood disease. If left untreated it could be fatal. Abi was subjected to weekly blood tests and daily doses of Folic Acid.


Little Tsunami proudly supports COPE – Centre of Perinatal Excellence


 

Abi was unable to crawl or walk at 16 months old, when an x-ray revealed severe hip dysplasia in her right hip. She was fitted with a Spica cast for three months but she never complained, even in 40-degree heat in Western Australia. I wondered how we would we get through this; unable to move her body; lifting her heavy body in and out of the car; feeding her in a special pram and washing her little body on a change mat in the laundry room. After Abi’s Spica removal, she took about six months to finally take her first steps. That was one of the most exhilarating moments and something we’d all wanted for so long.

In July 2015, when Abi was three and a half years old, she became very lethargic and pale – we thought it was the Spherocytosis. After four lengthy hospital admissions and three blood transfusions, Abi was transferred to the Royal Children’s Hospital for bone marrow aspiration. Three hours later she was diagnosed with Prep B Acute Lymphoblastic Leukemia.

 

Abi has been “a fighter since her first breath”. Image supplied

 

Being told my daughter has ALL (Acute Lymphoblastic Leukemia) was the worst day of my life. I heard the words “Acute Lymphoblastic Leukemia” and I ran out of the ward, through the corridor, down the lifts and to the bench by the rail tracks. I wanted to scream but I sobbed with my head in my hands. Eventually I found the strength to walk back to face the doctors and what was ahead for Abi.

From one day to the next I went from scrutinizing over the correct dosage of Panadol for my child to administering cytotoxic drugs. I saw my little girl go through so much pain and feeling so scared. I couldn’t take the pain away but did everything I could to calm her. The hardest part was taking Abi through to the operating theatre for a lumbar puncture. She screamed and fought me, and begged me to take her home. Inside I was screaming and crying just like her, but I looked her straight in her eyes and told her to keep looking at me until the aesthetic took hold. Only when she closed her eyes did I break down.

 


Want to share your story? Find out more.


 

It has been the greatest challenge to be brave in front of my children. It’s broken me so many times but never enough to not be able to pick myself up. I am used to facing challenges in my life but this is my baby girl. I have felt powerless; out of control; terrified.

My partner left work to help share the hospital treatment with Abi and to look after Ben at home. This put us under huge amount of financial strain to the point we are badly in debt and have nothing to retire on. We nearly lost our home, and our car. Now we are struggling further due to my poor health (I was diagnosed with Fibromyalgia in Sept last year). The stress has taken a massive toll on us all but we are still here, fighting alongside Abi.

“They are my life and soul.” Abi and her brother Ben. Image supplied

I hope that in sharing my story, other parents going through some of what we’ve experienced won’t feel so alone.  It is okay to ask for help in any form. Breathe. Take the time to breathe and recharge. The journey is long. It’s extremely hard and stressful. Take one day at a time and try not to focus too much on the “what ifs” and “what was”. This is your new normal.

I always knew I was strong but never knew just how strong I could be when there were no options. To ignore my fears, to comfort Abi and to smile and reassure Ben that all would be okay when I had no idea if that was true. I love my children with every inch of my being. Abi has brought so much love and laughter into our lives that even if I knew what would happen I wouldn’t change a thing. I’d do anything for them, they are my life and soul.

Lisa is mum to Ben, 6, and Abi, 5.


Little Tsunami - Thumbs Up for Abi

 

 

Give a thumbs-up to Abi by supporting her Thumbs Up for Abi GoFundMe campaign.

You can also visit Thumbs Up For Abi on Faceboook.

 

Leave a Reply