No matter your God or in what you believe
There’ll be times you’ll wonder “why the heck me?”
For not always can we choose what we would like
All we can do is pick… fight or flight
Our daughter whom we love with all of our hearts
Has something wrong with her DNA parts
She looks just fine, even cute as can be
But it hides the truth that many don’t see
Yet research and science keep giving us hope
That perhaps one day they’ll cure all folks
No more sadness or heartbreak of seeing your child
Different from others whether severe or mild
So the future for Gabi is hard to predict
Her mum often asks “what do you think?”
I wish I knew or had some insight
But all I can say is “we’ll always fight”
Welcome to Our Journey. When people like yourself seek assistance from organisations such as ours, within a very short time of meeting, you are telling a complete stranger about some of the most personal, emotional trials you have endured. You expose your most vulnerable life experiences, often not knowing if the person sitting opposite you “really gets it”.
For this reason, we thought we would take the opportunity to share with your our journey. Our journey is the how and why Plan Wise Living came about.
Our journey began in 2001 as proud parents of a beautiful baby girl. Being five weeks early, we were in the NICU, just for a week and discharged home with no significant concerns. Over the coming months, achievements seemed slow and at sixteen months, we received results explaining why our daughter was not reaching her milestones. We received a diagnosis of a very rare chromosome abnormality amongst others. In the months that followed, we were catapulted into a world that until that moment we knew nothing about. We began therapies and attended many hospital visits and stays searching for more answers.
With our large medical team we learnt a whole new language, including medications with names that we thought we would never be able to pronounce. We have met more specialists than we knew existed and who, together with the nurses, have been through many stages of our journey with us, some for more than 13 years. The therapies, treatments and surgeries were intense and at times exhausting and heart breaking. So many pieces of equipment and orthotics that we knew nothing about. We’ve become pretty good at maintenance of our own wheelchairs, orthotics, walkers and home modifications. We’ve learnt specific tools of the trade and the many ways everyday items can be modified.
Having multiple physical, neurological and medical diagnoses, we have learnt to ask for and accept help, at times from complete strangers. Our daughter is non-verbal so we have learnt to read her queues and behaviours to be able to gauge who she is comfortable with and best suits her care needs.
It took us a long time to accept our lives would never be what we dreamed they would be. We have had to let go of many dreams and aspirations for our daughter. However, in letting go, we have created new dreams, traveled new journeys and met some amazing, beautiful people along the way. We have lost some friends, we have made new friends.
We have embraced our life and are proud to talk about our journey. We love to hear your stories, we would be honoured to travel your journey with you.
Society has come a long way to accepting disabilities, however, there is still a very long way to go. It is for our daughter’s future and people with disabilities future that we have created Plan Wise Living. We have so much passion and big aspirations to strive for an inclusive society free from indifference.