17 August 2006 – 24 October 2014
a Reason to Smile
Theresa Botha Nieuwenhuis
That night I was so scared of going to sleep because I was scared that she would no longer be with us when I awoke. My husband and I lay with her for a long time and I put my hand on her chest and I said to him that her little heart was beating very fast. I stroked her hair and just sat with her for a while and eventually I went and had a bath and went to sit in the TV room.
I was exhausted after the week and a half in hospital, and my husband told me to go and get into bed because I had to get up early to go to work the next day. I told him that I was petrified to go to sleep. I got up and went to sit by her for a while again and just stared at her for a long while.
I took her hand in mine and said, “Sussa you are tired, go and rest now… we will be okay I promise.”
She opened her eyes and looked at me and then closed them again without saying a word. I kissed her on the forehead and walked out. I got into bed and lay awake for a long time listening to how she was struggling to breathe, then I fell asleep.
I will never forget the morning of the 24th October. My alarm went off at 04H00 as per normal, but there was something different… there was dead silence, no sound of Xuané struggling to breathe, not a sound from outside… just… deathly silence…
Deep in my heart I knew what awaited me but I blocked it out and walked past her room. I switched the kettle on, got bread out to make Mia’s sandwiches for school… I remember opening the butter, but I told myself “You have to go into that room one time or the other.”
I put the knife down and walked back down the quiet passage; I walked into her room and stood there with my hand on the light-switch… I waited for a few minutes then said to myself go on, switch on the light. I took a deep breath, switched the light on and walked in and there she lay, dead quiet.
I looked at her and realised that she was no longer with us, and all I could get out was NO!! and MY DARLING!!!
My husband came running and I knelt down next to her bed and held her cold hand. He felt for a pulse and I could see the tears begin running down his face.
Mia came in and asked “What now Mommy?” I could not get a word out and my husband told her that her sister has gone to be with Jesus. I hugged her and she turned around and walked out.
I got up and realised that I had to let people know. I was bewildered… I phoned my family first and then we phoned the minister and asked what the next step was. We were not sure what time Xuané passed on so we had to work quickly – the minister phoned the undertakers and they arrived at 06H00.
I was sitting crying in the bedroom when the minister called me and told me to bathe Xuané and take all the tubes out and dress her nicely – I wanted to kick him at that stage because how could he expect me to bathe my daughter who had no more life in her myself? According to him it was one way to take my leave of her, but at that stage I thought it was very insensitive of him.
I walked back into her bedroom and as soon as I saw her the tears started coming again. I got everything ready and removed her catheter and my husband helped me to bathe her, but when he lifted her up so that I could put the dress over her head some moisture came out of her mouth and he told me I should go out and that he would first clean up. I left then but every fibre of my being just wanted to be there with her.
When I went back in we finished dressing her and I held her hand for the last time and then went and waited in the passage. My husband picked her up and placed her on the gurney; they covered her with blankets and strapped her on and then pushed the gurney out to the hearse. It was the worst feeling to watch them drive away knowing that I could not go with her.
A friend offered to take Mia to school and I accepted gratefully as I just could not face all those people at the school at that time. I informed everyone and put a notice on Facebook, and so the people began arriving and then we had to go to the undertakers to make all the arrangements for the funeral.
I was in a total daze… I listened to what the man was saying, but was not actually hearing a thing. We decided to have a private cremation and to not have the coffin in the church because we were scared that her sister would want to take Xuané out of the coffin; she was still very young and did not really understand death, so we wanted to avoid that.
The man at DOVES in Standerton was so gentle and he spoke to us so nicely. He asked if there was going to be a viewing, and at first I did not want one because the sight that I had seen was not a nice one and I did not want everyone to see it, but my husband asked whether we could have one and I agreed.
Once back home there was an influx of people and flowers were constantly being delivered, but I just could not anymore and went to lie down in my room for a bit to hide away from everyone and everything. I just wanted to be alone with my emotions, which were all over the place at the time. We knew that she was not going to make it, but the shock was still a big one nevertheless. I took one of her favourite teddy bears and went to lie down on the bed, but a little bit later I lay down next to the bed on the floor where nobody could find me.
My sister walked in and just held me tight. I was heartbroken; my child was gone… forever. I had to pull myself right because I could not collapse… everyone expected me to so I would show them I would not. I could handle anything, and I would handle this bad experience as well. I got up and wiped away my tears and went and made coffee for everyone.
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 16 of Xuané… a Reason to Smile tomorrow…