Parents:
Russel and Veronica Steyn

Profession:
Russel: Self Employed Entrepreneur
Veronica: Full time Caregiver

Age of parents:
43 and 40

Child’s name:
Carla

Age: 13 years old.

Is this your only child?
No, Carla has a younger brother aged 7.

Diagnosis of child: Mixed Cerebral Palsy as a result of negligence at birth.

What are the biggest challenges facing your child on a daily basis?
Carla is profoundly challenged and requires care 24 hours a day, 7 days a week. She has very little function and requires us to feed, change, bath, move and keep her stimulated. We require a care giver to help with these tasks. We have a Zimbabwean woman who helps Carla and I am truly grateful for how well she cares for my child, we would not be able to have some sort of a life without her. As Carla has gotten older I would say the biggest challenge is her physicality, we are all taking strain with lifting and moving her around.

What are the happiest moments you have with your child on a daily basis?
There are less happy moments now as Carla heads into puberty - she is more frustrated, grumpy and withdrawn. As a younger girl she would light up the room with her smile and laughter - this is what kept us sane as she could just as easily loose it and whine for hours. She loves swimming and swinging in her special swing. These activities truly make her happy.

Are you a single parent or married? Married for 10 years.

Has your special needs child had an effect on your marriage?
I think my husband and I are remarkable for still being together! This has tested and put every strain imaginable on us - the cost of raising a child with special needs is insane. The first 4 years of no sleep. The months of watching our child have 30 or more seizures a day. We have been put through our paces but through it all, we love each other, we laugh a lot and we take time out as often as possible. We also had another child 6 years after Carla and that was a real gift and allowed for a lot healing.  As we always say - we would never change this experience, just the ending.

What has your child taught you about yourself, both positively and negatively?
My child’s disability has had the most profound impact on my world and how I see things. I have never loved, protected, fought for another person as much as I have for Carla. She is tucked into my heart and soul and I know how she is doing without needing to see her. Our bond is tight. We are now in a new phase, the teenage years and I realise that I cant carry on caring for her in the same way. I can’t sustain this pace! So I am needing to let go and hand over to others, I’m needing to look after myself better and value how important I am to my family. We are all only given one life and we must live our lives to the best we can, I know Carla wants that for me too.

Are your family and friends supportive?
Our family were great when she was little, now I think they have become a little bit scared of her. How heavy she is, that she is not as cute as she was when she was little. They are not sure how to be with her any more.

Do you take time out, if so what do you do to relax?
It took years for me to learn how to switch off, I could be somewhere else but my mind would be on her, always on her.  I think I had Post Traumatic Stress Syndrome from the early years of caring for her. We make a point of getting away, doing everyday things. We have a younger son and with him came normal activities. It’s very important to us that his life is not determined by her disability, he is free to have a wonderful childhood.

What has made the biggest difference to your child’s quality of life?
Time. Time has allowed for healing, for accepting and for loving Carla for who she is, not for who we want her to be. We have been realistic about what she can and cant do, she has received all sorts of interventions but at the end it’s way more important that she is has happy and comfortable as she possibly can be. The pressure is off her to ‘achieve’ and catch up, she cant.

What is your dream for your child?
Dreams are wonderful because it makes anything possible - More than anything I would like to hear her say ‘mama’ hold my hand and put her head down on my chest. That would be a real gift.