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Alexander

 

Alexander's Story

Tell us about Alexander?

Alexander is my only child and was born in the month of May weighing only 1.6kg. He spent his first 134 days of his life in the Neonatal Intensive Care Unit (NICU).

Alexander struggled to grow and thrive. As he was born at the start of winter, Alexander caught all kinds of viruses and had a lot of respiratory issues. With care and support from the staff at the hospital, along with patience and perseverance, he was eventually able to come home.  

Since this time, Alexander has had many setbacks and complications because of a low immune function and a severe neurological abnormality. Alexander has a developmental delay, vision and hearing loss, sleep apnoea and needs to be fed through a gastrostomy.  

Alexander communicates non-verbally. He smiles and giggles and loves to give you a high five when he is happy. He is also assertive in telling me “no”. He swats my hand away if he doesn’t want something and grunts at me if he doesn’t approve of what is happening. 

Since his first admission, he has had many scans and tests, spending many nights in the hospital.

 

What does Alexander enjoy?

Alexander is now five years old. He loves spending time in the sunshine, visiting the beach, exploring art museums and listening to someone read to him while he turns and touches the page.

Alexander is also fascinated by bright light displays. He loves to play with his hand instruments, attend live music performances and go to the movies. When Alexander is in his standing frame he likes to watch his favourite movie on his iPad. He also likes to snuggle with me while I read. 

This year saw Alexander start primary school for the first time! Alexander is sometimes transported to school on the back of a bicycle. He enjoys spending time outdoors and being back packed around in his carry pack.

Alexander has travelled with me to America, Mexico and recently visited Tasmania with his family. He is a good traveller and doesn’t mind the journey. He seems comfortable meeting people, exploring new sights, sounds, smells, tastes and sensations in these new environments. His time in the NICU at the start of his life may have given him the capacity to be so flexible, resilient and adaptable. 

Alexander is very loved. He embodies love and helps people learn about what unconditional love means. He is not mean or unkind to anyone.

Photo by Wendell Teodoro

What would you like health professionals to know about Alexander?

I would like health professionals to understand that Alexander is so much more than a label attached to his illness, a problem that needs to be solved or a bunch of symptoms that need to be treated. Alexander should have all the opportunities given to any well child. 

Alexander’s condition does limit what he can do but does not limit his value or worth. He has the ability to learn, grow and physically strengthen. There is always room for improvement and Alexander can reach goals with strength-based support provided by health professionals. Alexander tries really hard to overcome his physical and mental obstacles that make it hard for him to grasp things. I worry that Alexander may struggle with his vision and hearing impairments and want to ensure that he is comfortable and ready for what happens next.

Health professionals can help Alexander to continue to thrive by helping to adapt his environment to support and develop his learning and abilities. Sometimes this will require thinking outside the box, being creative and having a positive approach while looking at all the possibilities and trying new things. If one approach fails, we should learn, adapt and try something else.
 

What would you like health professionals to know about you in your parenting/carer role?

Caring for Alexander as a single mother is exhausting. One day I would like to return more fully to work but this is difficult when I feel like I am a 24/7 nurse/carer. I try to keep some boundaries in place so that I can have a quality of life for myself. During a hospital admission, I will often go home at night to catch up on some much needed sleep rather than sleeping at the bedside - I feel this helps save my sanity!

In my situation, I have limited help from family. I am fighting my own health battles as a result of living with the anxiety and stress of caring for my son. Caring for Alexander is emotionally challenging and it’s not easy for me to switch off at the end of the day. Often the only time I can work, respond to emails and fill out forms for Alexander is late at night which impacts my sleep.

I realise the importance of “me time” where I can have the opportunity for some quiet headspace. Health professionals can help me achieve this by simplifying and co-ordinating the processes of Alexander’s complex care needs as much as possible. 

It can take a long time to build trust. I would like health professionals to think more holistically about Alexander's care by including other supports in addition to medicines, tests and surgical options that are already offered. I believe it is important to consider the whole picture of the family including our beliefs, lifestyle and choices. Listening, understanding and adapting medical care to fit my values is key to developing trust.  

Sometimes when I hear the phrase “family meeting” I get scared and anxious that there is really bad news to come. During this time, it really helps if health professionals can demonstrate empathy and think about how to deliver information.
 

What is important to your family?

  • Clear and easy communication. 
  • Efficiency – time is precious!
  • Improved access to view our child’s medical record (including practical use of “My health App” to be able to co-ordinate and manage the complex care needs of Alexander)
  • Streamlining and digitising paperwork (for sustainable reasons)
  • To feel listened to and supported.
  • To have guidance in understanding the complex world of hospital care/ disability
  • Advocacy (e.g. writing letters) to help us access services (especially Allied Health) to improve quality of life
  • Taking time to visit our homes and therapy centres to get a clear understanding of what our lives look like.

What does palliative care mean to you?

For my family Palliative Care is important to help me access the additional supports that are needed in the home and community. Being referred to Palliative Care means I have a team of people to support me during the ups and downs of Alexander’s illness and also to help me prepare for his death.

The team is supportive and have given me advice and resources to access throughout the different stages of Alexander’s journey.

It means connecting with other families who are in a similar situation to provide connection and informal support through a sense of community. This can really help families during difficult times.

Paediatric palliative care is about living the best little life you have to the fullest and making the most of each moment. It reminds me that life is not a dress-rehearsal.

Alexanders mum, Jen has recently produced a documentary film to share her experiences and reflections about caring for Alexander and their life together. The following provides a preview to this thought provoking film:

 

TRAILER: Expecting The Unexpected from Polixenni Photography on Vimeo.

It is hoped that this educational documentary will broaden health professionals understanding about caring for a child with complex care needs and provide a visual story for other families faced with a similar diagnosis.