Not in your wildest dreams could you imagine this journey. You wake up one day and it leads you to 5 months away from home. I am a single Mum of 3, Ruby now 24, Riwa 21 and Charlotte 13.
I worried about having a third child, but Charlotte was a delightful baby. Secure in her routine, happy, healthy and bubbly, bystanders would notice her and see her spirit. She was born in November of 2003, and entering into her 6th month on June 17th 2004, she woke at 3am, with vomiting and high temperature, I rushed to get her the appropriate meds, and she started a high pitch whimpering ( a symptom not then mentioned, as a symptom).
We fell asleep together till morning, but little did I know she was in deep toxic shock. Waking, I let her sleep on, my gut feeling was worried, but I put it down to me being over protective, and with a sitter in place to oversee Charlotte I rushed Ruby and Riwa to school, and went to work for two hours.
Arriving home I was shocked to hear Charlotte was still sleeping and on closer investigation, I was shocked to see her in the same position I left her in, motionless, gazing, eyes half open, and two defined blood spots on her neck. Panic rose up my body, as I recognised the symptoms as Meningitis.
The story continues as written by Perry Bisman (her Dad) on her website.: www.charlotte.cleverley.bisman.com
Life changed that day, the feeling of helplessness and hopelessness was hard to endure. The emotion like having a jumbo jet fly over you while you lie paralysed on the tarmac face up. We watched helplessly over Charlotte as she went to war with the most deadliest disease known to man. Hospital was our world for the next 3 months. Day/Night – we never knew, it just blended into continual highly stressful seconds, minutes, hours, days and months.
Our journey climaxed to a social media frenzy after a front page Herald paper headlined the Vaccine for the Meningitis B (which Charlotte was suffering) was about to be thrown out due to the nearing use-by date, along with $250 Million of taxpayers money. We contacted the Herald, Really – You have a Vaccine?
Get it out there that this is what it’s doing to our baby. Charlotte’s photo in the front page of the next morning’s Herald paper, article written by Charlotte’s father Perry. She was pictured happy on a swing. Holding on with hands. Balanced by legs, all now taken by this evil disease. New Zealanders we’re mortified and demanded the vaccine. Which was soon released into all schools. Nurses left our ward to take part. Doctors thanked us.
Charlotte survived, she had nationwide interest in her well being and we were followed around by media. But we had our child, devastated by disease, a quad amputee, only her elbow to work with. We spent two months at a children’s home to heal from skin grafts and debridement, and to adapt to Charlotte as a quadruple amputee.
One doctor, one day mentioned the journey will be a rocky road. Little did I know the journey, little did I know the road was, in fact, many mountains to climb. How much resilience does one need? For a baby to fight a deadly bacteria. For doctors and nurses to be in the operating theatre and save children’s lives. For parents to endure the grief and guilt of their child’s illness. To endure whatever trauma life gives you.
Now our ‘Normal’:
Battling the accessibility of businesses, inaccessible disabled car parks that have had no thought around their placement, disabled toilets that are locked or used as a storage lobby, public transport that is not accessible, governed limb centers on tight budgets and over loaded with patients exasperated by diabetic casualties, Carer Aids that are underpaid, unfit, and uneducated on a high-needs spectrum on the individuality of ORRS students, a Health and Safety law which confines parents of disabled children and entitles the removal of their mobility and free movement and speech. – To name some of the hurdles. The strength and endurance it takes. On top of the 24/7 care of a high-needs child.
My job title of now without the university degree : Activist for Human Rights, physio, mobility designer, and gadget designs, prosthetist, skin and scar management, employer, wages clerk, fundraiser, public speaker (TV and articles), assisting with infrastructure for access, researcher, environmentalist, nutritionist, mentor, carer, organiser of equipment repairs, appointments and meetings.
Without these ongoing challenges, I would not be the strong confident person I am today. Charlottes resilience and spirit, has enabled me to endure all challenges in our journey. When you mine for gold, there’s a lot of hard work to find it. Similar to the strength and endurance you need to raise a quad amputee.
When the day flows, when Charlotte first swims, when she takes her first prosthetic leg steps,when she runs in blades, disabled surfing, skydiving, her incredible art, her happiness. That is my gold.
About the Author
Pam has gone through many struggles over the last 10 years. far more than other mums, this story is a way of her connecting with the world about how you can get there if you keep on pushing. You can find out more about charlotte her daughter at