Xuané… a Reason to Smile Part 23

xuane ...a Reason to Smile

Xuané Niewenhuis
17 August 2006 – 24 October 2014
Forever ^8^


a Reason to Smile


Theresa Botha Nieuwenhuis

On the 3rd of February I returned to a place which I thought would never see me again and to which I did not want to go. I forced myself to do that which I did not want to because I knew that if I did not, I would go mad.

November 2013 - Xuane's new wheels

I went back to Unitas Hospital to donate Xuané’s wheelchair. That feeling when I walked through those doors – it is a feeling that I cannot describe or explain to anyone; it was just plain crappy.

To walk in there and see those little faces… to look at the room in which my child lay for 2 weeks… the room where I made peace with the situation… the room where I asked God to come and fetch her because I could not stand to see my child suffer any longer…

Xuané was suffering, and it no longer mattered how many new things I learned to try to make things easier for her; none of them could save her life.

It was the end, but I did not want to see or accept that; I continued to fight and suddenly I found myself standing in a room with the worst sound ever screaming in my ears… Silence!

And there she lay… lifeless…

How do you maintain your composure and not scream hysterically nonstop… HOW?

How do you pick up the phone and phone people to give them this type of news?

How do you continue as if it is a perfectly normal day?

How do you go to sleep at night without recriminations?

How do you get up every day just to relive the nightmare over and over again?

Well that is how my days are now…

colourful monthsEven though I have a beautiful ray of sunshine daughter that hugs me whenever I need it, or just smiles if I get a tear in my eye… I also sit with that emptiness every day that not even she can fill.

And what gets to me most is that I will ALWAYS feel this way!!!

It’s funny how people withdraw from your life when you go through a difficult time. Some people who claim to be your best friends do not call, they do not ask how it’s going… and this is the time that you need them most – even if they just phone to listen to you constantly crying on the phone. Knowing they are there for me any time of the day or night help already helps a lot; one must express all the emotions. But they are just not there… they just disappear from the globe… but the day that your child dies they are the first to show their grief.

Why now? I do not want your sympathy now if I did not have it for five years. Some people tell you “no man, be positive, she will get well and will get up and walk.” Some people tell you that you should pray and remain strong. For your information, this is all we do as parents. We have no choice, we must be strong and remain strong because if we do not, who’s going to care for our sick child?

Sometimes I think people should just shut their mouths and realise what they are actually saying to the parents. If they say do not lose hope, yet every time you see the MRI scan and realise the tumour has caused more damage, how does one not lose courage and hope? How do you continue believing every time there is a setback? It is extremely difficult. People also have the tendency to say do not upset yourself; tomorrow it will be better again …  News flash!!!! It will not go better tomorrow because our child will not be back tomorrow, Moron!

Best of all, people tell you about bad dreams they had of your child. At that moment you actually go white with anger. Keep the dream to yourself please; I do not want to hear it. If you have a nice dream about her then share it with me, otherwise… keep quiet, because what are you implying with this dream of yours?


Little Fighters Cancer Trust would like to extend a huge thank you to the Niewenhuis family for allowing us to share Xuané’s story and photos, and hope that it will bring Awareness regarding Childhood Cancer to the public in general so that they can get a bit of an idea what battling Childhood Cancer is like – why the Little Fighters Cancer Trust does what it does, why creating Awareness around Childhood Cancer is so important, and enlightenment to other parents.

We will continue with Part 24 of Xuané… a Reason to Smile tomorrow…


About LFCT

This is a blog about CHILDHOOD CANCER and CHILDHOOD CANCER AWARENESS Little Fighters Cancer Trust is a non-profit organisation that offers support and aid to Children with Cancer and their families. When a child is diagnosed with cancer it affects the whole family. One of the parents, usually the mother, must give up their job to care for the child and this creates financial problems for the family. In South Africa especially the majority of these families are not well-to-do; many of them are rural. A diagnosis of cancer can wipe out any family’s finances, let alone a poor family. The costs of special medications, special diets, hospital stays, transport to and from the hospital or clinic and accommodation and food costs for the mother who spends most of the time at her child’s bedside are astronomical. These are the people and problems that fall through the cracks, and these are the people that Little Fighters Cancer Trust has pledged to help in any way possible. LFCT takes a holistic approach to assisting the Children with Cancer and their Families, with the main aim to be the preservation of individual dignity and pride. Little Fighters Cancer Trust also focuses on promotion and advocacy of National Childhood Cancer Awareness in an effort to increase awareness of Early Warning Signs of Childhood Cancer. This would result in earlier diagnosis, giving the Child with Cancer more of a chance at Treatment and Survival. See "About" for more Background info

Posted on 23 September, 2015, in Blog, Onco Parents and tagged , , , , , . Bookmark the permalink. Leave a comment.

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