Parent
Louis and Goeun Botha Bae

Profession:
Lecturer at Wits

Anthropologist and photographer

Age of parents:
48 and 39

Child’s name:
Lucas

Age: 3 years and 10 months

Is this your only child?
Lucas has a sister, she’s 10 weeks.

Diagnosis of child:
Lucas has a rare genetic condition. A deletion in chromosome 10q11 (i.e. there is a missing portion on the long arm of his chromosome 10). This has translated in several heath issues and general developmental delays.

What are the biggest challenges facing your child on a daily basis?
Lucas has low muscle tone, so he cannot move by himself or sit unassisted which limits his ability to explore, play, or do any everyday activity. He is also non-verbal, so he gets frustrated when we struggle to understand him.

What are the happiest moments you have with your child on a daily basis?
The first thing people say when we tell them about his condition is: “oh shame!” What they don’t understand is that despite the difficulties our son makes us immensely happy and that there is nothing to feel sorry about. He has the most amazing smile, he’s funny, naughty and loves music! When he gently strokes my face in the morning my heart melts. I can feel him saying “I love you mom” with this gesture and the intense look on his eyes.

Are you married? Married

Has your special needs child had an effect on your marriage?
It can be challenging especially now that we have a small baby and we hardly get time to spend when it’s just the two of us. But I think the bond between us as a couple has grown stronger because of the difficulties and because of the love we share for our son. We know that together as a family we can achieve anything!

Are your family and friends supportive?
Our families and friends live far away – mine mostly in Chile and Louis’ in Cape Town – but they really seem to love Lucas and have been supportive in whatever way they could. On a daily basis, people we don’t know that well personally, like Lucas’ therapists, his nanny and staff at the school that he attends, have become an important support network.

What has your child taught you about yourself, both positively and negatively?
Lucas has taught me so much about myself... about my limitations and about what I can do. I tend to worry too much about things that I have no control over and that sometimes stops me from enjoying the moment, but I also know now that I am much stronger than I thought.

Do you take time out, if so what do you do to relax?
Time out? What’s that!?
About two years ago, when Lucas started to go to school and I found myself with some “free time” for the first time in a while. It was so unusual it felt strange. After a short while I started a small empowerment project called Little Pine Tree (www.littlepinetree.co.za). Inspired by my son, I wanted to make sensory stimulating toys for kids like Lucas, but after meeting the first group of ladies and seeing how they struggle, the project changed a bit. The main aim became to teach women a skill (i.e. how to make crocheted toys) that could help them to earn an income while working from home. Now that we have a small baby things have gotten a bit more hectic. If we are lucky and the kids go to bed early we like to watch a movie to relax.