Stories with soul: Source Mamas raising their kids with disabilities. The tears, the triumphs, the raw and the real.
How did you first become aware that there might be a concern about your child’s health or development? What were the early signs that led you to seek a diagnosis?
My pregnancy was pretty uneventful despite my daughter being born 5 weeks early. We were in ICU for a week and given a clean bill of health and sent home!
A week later, however, she went into cardiac arrest at my mother-in-laws house and I had to preform CPR on her. We were taken to Princess Margaret hospital. That’s when we found the first of many issues with my daughter health.
Can you tell me a bit about the diagnosis your child received? What does it mean, and how does it affect your child’s life?
My child has several diagnosis such as heart condition, lung condition, global developmental delay, non-verbal autistic, brain abnormality, genetic condition plus mild cerebral palsy.
The first diagnosis is the hardest in my opinion, as it has opened my eyes to a world of medical appointments and advocating for my child in a way I never imagined.
The genetic condition affected our family as its hereditary and I was pregnant with our 3rd baby when I found out about it. The global developmental means I am now involved with NDIS, therapy appointments and the year after year battle of fighting for your child and justifying every medical equipment you need and every dollar you spend.
I found that we have had to grieve the life we wanted for our child and accept the life she will have. We had to come to terms with the fact she might not ever say “I love you” or move out of home but you learn to enjoy the smaller things in life and appreciate every little smile and laughter our incredible brave and resilient children have.
How has the diagnosis impacted your family dynamics and daily routines? Have there been any specific challenges or adjustments you’ve had to make to support your child?
The diagnosis has impacted our family routines massively! We have weekly speech, fortnightly OT and music therapy and physio sessions; along with full time school and medical appointments! It has made it impossible for me to go back to work.
I have to make sure I allocate time to spend one on one time with my other two children as they are often having to take a side seat and get dragged along to all these appointments. I have found that the biggest challenge we have is time.
Trying to find enough time to do the things my daughter needs; plus spend time with my other children, research and plan for NDIS meetings, run a house and of course, try and fit in what little time you have for self-care to feel like a human being.
I found I had to put my life ‘on hold’ for a long time. I have only just now gone back to school and started to take my selfcare seriously.
What kinds of treatments, therapies, or interventions has your child been receiving? How have these approaches helped your child’s development and well-being?
My child has been mulitple therapies for years, and yes she has improved but it’s been at a very slow pace.
Speech has helped get communication devices and helped with implementing sign and the use of the device they also help with her meal time management plan and her safety while eating when sick.
Physio helped get her walking refered us for AFOs plus help to obtain a wheelchair and walker to help improve her stability and fatigue.
OT has helped with her daily living such as eating, cutlery, safety steps and making things easier for my daughter to use such as electric soap dispensers and easy push button cereal dispensers to help her build up her independence
I started to feel her development was coming to a bit of a stand-still. That’s when I decided to look at music therapy. It was the best thing we could have done as she found something she really enjoys and was able to stay in an activity for a prolonged period of time.
She started to make eye contact, started to copy actions and started to copy sounds. I couldn’t believe how much difference it made in such a small amount of time! She can now sign ‘more’, ‘finished’, ‘help’ and ‘open’ with assistance.
As a parent, what are your primary concerns and hopes for your child’s future in light of their diagnosis? How can those around you offer support during this time?
My main concern and frustration continues to be there isn’t any information out there on my daughter’s genetic condition. There is none, as far as we know, out there that has the same condition so doctors and specialists are unable to tell us what her life will look like and how her development will progress.
The other main concern I have is what will happen to my baby after I die. I have to leave her care in the hands of her sister and as much as I know when she grows up she will do it and be happy to, I don’t ever want to place this stress and burden on anyone let alone my child.
It’s not even the daily management such as nappies and showering even if we have people doing that for her, it’s year after year of NDIS reviews and the stress that comes with advocating for someone who doesn’t have a voice. It is solely on me to advocate for what she needs, to live and thrive, to be the best possible version of themselves.
If someone was wanting to support someone going through a massive change like this it can be as simple as reaching out over messages and asking if they want a chat sometimes you just need to vent what is going on. Even popping around for a coffee and a chat can help.
A lot of the times you feel so alone and isolated and that no one understands what you’re going though so just having a friend there even if you don’t get it or can understand what they are going through but to just be a non-judgemental voice and a safe space to express how we are feeling.
You could always make a few meals to pop in their freezer for when they are too emotionally exhausted to cook or offer to look after their loved one so they can take a nap if that’s even possible with there situation but no matter how much or little you help it will always be greatly appreciated
My greatest hope for my daughter has always been, and always will be, to be happy and know she is loved.
