Let me introduce to you my bubbly and delightful little girl Heidi.
Heidi is a 7 yr old little treasure who is in yr 3 this year at a wonderful Special needs school. Heidi has 2 older sisters, Caitlin (18) and Amelia (10). Unfortunately, Daddy passed away 4 yrs ago. Heidi lives with Mummy Sonya and her sisters and Grandma, 2 miniature dachshunds (Lexi and Bindi) and 3 cats (Patches, Vera and Missy).
Tell us about Heidi?
Heidi was delivered at 32 weeks gestation. At 3 weeks of age she was diagnosed with Cerebral Palsy and a few other bits and pieces just to add. Heidi was not meant to survive the first 24 hours after birth…..yet here we are almost 8 yrs later!! Heidi has given Mummy quite a few heart stopping moments during the years. Heidi is also profoundly deaf but has 2 cochlear now. Heidi has a wonderful and sunny disposition that would melt the hardest of hearts lol……we call her our little ray of sunshine. Heidi can also chuck a tantrum like any other child her age!
What does Heidi enjoy?
Heidi loves music and socialising! Celine Dion and Mickey and the Roadster racers especially. Heidi loves being at school and really shines when she sees her teachers and classmates. She is quite popular…..Heidi also loves water (Hydrotherapy for sports), her family and friends, being outside whether at the park, veranda or shopping, reading books (the more animated you are the more she loves it), and girls stuff like touchy feely activities
- Heidi does not like hard work lol
What would you like health professionals to know about Heidi?
I love the team that Heidi has both locally and at Randwick Children’s Hospital, but I wish that they could see Heidi in her everyday environment. The child they see is not Heidi at her best, they see her when we are visiting for tests etc or when we are generally critical and in ICU…. i wish they could see past all of the complexities and see the delightful, happy and beautiful little girl who is so full of life.
What would you like health professionals to know about you in your parent/carer role?
Heidi has presented me with a lot of challenges throughout the years. Parenting a special complex child is certainly a learning curve and I have learnt so much from her. Patience is the biggest one. Every day is a blessing to be spent with Heidi and I am blessed beyond words. It is my role as her Mummy to make every day count that she is still with me. I fight a lot of emotions that people will never understand. I do get emotional with the medical teams as I know Heidi better than anyone in the world. Please take more time to really listen to us parenst as we are fighting a battle that you will never understand. Our whole life is not just a battle with medical but the outside world as well. We do become overwhelmed with our role as parents and I also have other children whom require my time as well. I spread myself thin already. Professionals need to understand the term “Holistic Approach” as it’s the most important phrase they will ever hear.
What is important to your family?
It is important to me and my family that Heidi lives the best life that we can provide for her, to help her understand how very much loved she is and to make memories with her that will last a lifetime.
What does palliative care mean to you?
Palliative care means to me comfort……comfort to know that someone understands what I am trying to say without losing my crap, someone who understands the emotions that I am going through especially when it is needed the most. Family are good to a certain extent but sometimes you don’t want to share your inner most thoughts with them because they just don’t get it. Its wonderful to have an experienced team to support you in your decision making without judgement. That alone is invaluable…..