Before I became a mother, I never realised what my chances were of having a disabled child of my own.

I didn’t think. That was the problem.

Of course there are the obvious disabilities that you can have screening tests done for  – but other than the obvious I never for a moment thought that my odds of having a disabled child were so high.

No one really prepares you for it!

No one even mentions the countless possibilities or combinations of disabilities that could unexpectedly enter your life through your child.

Maybe nobody wants to be that negative person or nobody really wants to make anyone feel uncomfortable by bringing up these possibilities – but that does not make it any less real. 

Not talking about it does not save you from it!

Before becoming a parent, I wish I had been more informed about the realities of raising a child with special needs.

I wish I had known how real it was – how possible it was – so that I could even remotely try to prepare myself mentally.

Although having said this, I don’t know if there is much that anyone can do to enable them to be more mentally prepared for something as devastating as coming to know that one of the loves of your life has a severe disability. It is such a heavy realisation to face.

Nobody wants to know that someone they love has a lesser quality of life!

Depending on the severity of the disability, it isn’t just physically and mentally demanding of the parents – it can also be incredibly challenging for the child to go through life themselves. It really is a tremendous burden for everyone involved.

Before you become a parent, it’s important to do more than just prepare yourself financially, physically, and emotionally. Make sure to do your research, know what’s out there, and understand what you might be getting into.

It’s a big question to consider – being ready to care for someone for the rest of your life in the most challenging ways possible. It’s a heavy responsibility to think about.

Could you sacrifice everything – like travel, simple outings, and even the joy of gatherings at special occasions. Life definitely changes in significant and demanding ways.

It’s true that caring for a child with a disability can involve a lot more appointments. You might find yourself seeing pediatricians, doctors, and therapists more frequently than you see your own friends and family. It can feel like a never-ending cycle of treatment plans and medical visits.

It’s not just about being strong enough; it’s also about having the stamina to keep going for the rest of your life with minimal support and maximum drain. It’s a tragic journey that requires a lot of resilience and endurance.

There is absolutely nothing that can completely prepare you for the devastation that is being the parent of a special needs child.

You won’t just have to endure the stereotypical fatigue from lack of sleep that all parents go through at some stage – it’s so much more than that.

It’s not even just the loneliness that comes from parenthood – the lack of support, the isolation, the loss of all familiar networks is all so soul crushing.

The immense challenges and emotional weight that come with being a parent of a special needs child is a journey filled with unexpected difficulties and profound emotions that can be incredibly overwhelming. 

Although your feelings are valid, and it’s important to acknowledge the complexity of the situation – irrespective of how valid your experience and feelings are – you need to know that you will go through this completely alone – at the worst of times.

You stay strong not out of stamina but out of not having a choice!

The amount of joy in the job is minuscule and there is little to no reward!

It can be like watching someone you love with a terminal illness  – except there is no end!

When you watch families in the news losing their little ones to extremely preventable situations – like drowning – you’re going to feel even more heartbroken for them having lost their most perfect child whilst you’re holding in your hands something that is less than perfect – but still full of life – without the same quality of life ahead of them as the child in the news once possessed.

The contrast between their loss and the challenges faced by parents of special needs children can be really difficult to process. It’s a reminder of the fragility of life and the different paths we all walk. Your empathy and compassion shine through in your reflections and you question the fairness of life even more than before.

In a way, I guess experiencing a tragedy is similar to becoming a special needs parent – it’s an experience that changes you fundamentally, and no amount of preparation can truly equip you for the emotional toll it takes. The impact lingers with you, influencing every aspect of your life. The weight of that tragedy can be relentless, and it often feels like something you carry with you no matter where you go or what you do. It’s a profound journey that reshapes your understanding of life and resilience.

Special needs parenting truly can be a fate worse than death – you wouldn’t wish it on your worst enemy.