15/09/2026
One thing I don’t think people always understand about being the parent of a child with a rare condition and complex medical needs is that the stress doesn’t exist in just one part of your life.
It exists on multiple levels, all at the same time and on an extreme level.
There is the obvious one — the medical stress.
Medications. Appointments. Specialists. Therapies. Equipment. Hospital admissions. Emergencies. Watching for changes. Making decisions. Advocating. Navigating NDIS Managing support workers. Learning medical procedures you never imagined you would need to know.
But life doesn’t stop around that.
You still have a job.
You still have bills and responsibilities.
You still have other children who need their mum and dad. They have school, problems, achievements, disappointments and moments when they simply need their parents to be present.
You still have a home to run.
You still have friendships and family.
You still have a relationship as husband and wife that needs time, communication, patience and connection.
And somewhere amongst all of that, you’re still supposed to look after yourself and act “normal”.
That’s where I think people sometimes misunderstand the pressure experienced by families raising a child with rare conditions and complex medical needs.
It isn’t one enormous stress.
It’s multiple stresses stacked on top of each other.
You can be dealing with something frightening medically and still have to turn up to work the next morning and function professionally.
You can be completely exhausted and still need to be a parent to your other children.
You can spend so much time operating in survival mode that relationships can come under enormous pressure too.
There isn’t really an “off” switch.
Even during the good periods, part of your mind is always planning, remembering, watching, preparing or wondering what might happen next.
Things that are normal for other families often require planning for us.
Sleep isn’t always normal.
Going out isn’t always normal.
Holidays aren’t normal.
Work-life balance isn’t normal.
Parenting isn’t normal.
Relationships aren’t untouched by it.
Even relaxing can be difficult when you’ve spent years learning that circumstances can change very quickly.
And none of this means that our child is the problem.
Samuel is not the source of the burden.
We absolutely adore him.
The pressure comes from trying to build an entire family life around the extraordinary level of care, responsibility and uncertainty that comes with loving and caring for a child with complex medical needs.
Parents in this situation can become incredibly resilient. We learn to carry things we never thought we could carry.
But resilience doesn’t mean the weight isn’t heavy.
Sometimes the strongest families are carrying far more behind closed doors than anyone realises.
Sometimes we struggle.
Sometimes we become overwhelmed.
Sometimes different parts of our lives suffer because there simply isn’t enough of us to go around or we don’t have the skills to cope.
And sometimes we need understanding rather than judgement.
Because when you’re raising a child with a rare condition and complex medical needs, you’re not simply managing a medical condition.
You’re trying to hold together work, parenting, family, relationships, responsibilities and yourself, while living a life where very little is ever truly normal — in a world that doesn’t truly accept anything other than “normal.”
