Celeste and Henk are proud new parents to a beautiful boy, Bjorn. We thought you should meet them on their extraordinary journey with Down syndrome.
Our family is a bit different from other families. Henk is in the music & hospitality industry; he runs a restaurant called Capital Craft with his three business partners and they host a monthly music festival known as Park Acoustics. I design and make furniture while finishing my honors in Fine Arts. We were drawn together by mutual love for music and our entrepreneur streak that thrives on taking risks. Our little boy Bjorn is eight months old and by far the best risk we took in our lives.
Bjorn was born five weeks premature. The natural birth plan we had in mind flew out the window when I was rushed in for an emergency c-section. It was the last Sunday of the month, which meant that Henk had to run Park Acoustics. I was busy doing research and conducting interviews for my practical art exam that was suppose to happen that Monday. We only got to the hospital when I was already 6 to 8 hours in labor. I was excited, because I couldn’t wait any longer to meet our son.
Two weeks later, Bjorn’s pediatrician called us in. Instinctively I felt something was seriously wrong. Henk prayed for us outside the ward before we went in to see our pediatrician. The doctor calmly announced that they’ve ran some tests and Bjorn was diagnosed with Down syndrome. Henk stayed quiet through the whole appointment when I broke down in tears shaking my head. The first thought that ran through my head was; what did I do wrong? This is my fault. Then I realized that I knew absolutely nothing about Down syndrome. I got furious that we weren’t told that they were testing our son or that they’ve been suspecting it since birth.
It was a hazy scenario. The doctor told us to go home and process the news for two days before we go back to the Neonatal ward to see our son. I picked up my phone and texted my friends and family about the devastating news we’ve just received and to please respect our privacy for a couple of days. I didn’t have the guts to tell my family personally, Bjorn was the first grandchild. Ignoring the doctor’s orders, Henk and I rushed back to the ward so I could breastfeed Bjorn.
In the days that followed, Henk and I cried our hearts out spending all of our time researching the diagnosis. For a while I even contemplated our choice to go through with an unplanned pregnancy. The people around us had mixed feelings. Some prayed that he would die in the ward (so that he won’t burden us), others prayed that he would get cured through God’s grace, and some people recommended that we should take my gynecologist to court. Nobody knew what to say, but mostly the people closest to us were in denial. Because Henk has been working in the entertainment business for so long, we felt pressured to conceive the perfect child. Anything else would be an embarrassment since Henk was in the limelight a lot. All these unconscious superficial expectations and shallow dreams are exposed in such a situation – which makes you feel rather silly and vain.
I decided to blog about it and to make a public announcement. That way nobody would have to ask us personally or hear it through the grapevine. Bjorn stayed in the Neonatal ICU ward for three more weeks. It was the longest three weeks of our lives. My gynecologist only came to see us in the last week of Bjorn’s stay in hospital; he couldn’t look me in the face. He didn’t say anything of Bjorn’s diagnosis; he only asked me if I was okay. At that moment the anger I felt towards him subsided when I saw how hurt he was. The nurses were very supportive. They told us about The Baby Therapy Centre in Pretoria, which is a care Centre for babies with special needs.
Apart from the nurses, Henk and I were severely disappointed in the manner in which our pediatrician and gynecologist handled the matter. We felt that we were thrown into the deep end and didn’t know how to swim or how to ask the right questions. Our pediatrician couldn’t interpret the blood test results, and weren’t able to tell us which kind of Down syndrome Bjorn has, giving us false hope that it might not be that serious. Luckily for us I have a family member who is a pediatrician and she pointed us in the direction of a doctor who specializes in genetics.
After Bjorn was released from hospital, a friend came to visit me and gave me a book called Expecting Adam by Martha Peck. She told me it would change the way I look at my son, and probably life. The book is an autobiography of a woman who received a similar diagnosis when she was three months pregnant with her son, and still decided to continue the pregnancy. Apart from all the usual baby books I’ve read, this was the only book I’ve found useful.
Henk and I decided fuck it. We’re going to enjoy our brand new baby. Bjorn was barely a month old when we went on a 17 hour road trip to Cape Town where we took him to the beach, and every other place or market we would go to. We kind of forgot about the diagnosis and were genuinely blissfully happy. When we got back home from the holiday we immediately enrolled Bjorn at the Baby Therapy Centre in Menlopark. It’s been our saving grace ever since. Never have I met such caring and loving people in my life.
Bjorn receives occupational therapy, speech therapy, and physiotherapy at the Baby Therapy Centre – since before he was even three months old. Because it is a NGO, it’s less expensive than a daycare centre for “normal” babies, and the therapy was covered by our medical fund. I would highly recommend any parent who receives a similar diagnosis to start with therapy as soon as possible. What I’ve learnt from other parents/doctors who work with children with Down syndrome is that Down syndrome is not a death sentence, if anything you’re lucky to have a loving child.
There are no black and white expectations about your child’s condition, except that he has an extra chromosome. With optimal stimulation your child will flourish and can grow up to be a responsible citizen. Bjorn has met all his milestones on time. He is a bubbling eight month old who loves his bath time, rolling over and sitting up by himself. The biggest mistake I have seen people make, especially in older generations when there were a lot less resources available, is to limit your child by not giving them enough stimulation or having little to no expectations of your child due to such a diagnosis.
We hope that through love, stimulation and education, Bjorn will discover something he cares about passionately and would like to persue further in the future. With a father in the music & hospitality industry and a mother in the art industry, he has endless creative opportunities waiting for him. The most important thing for us is to try and raise a responsible citizen. Bjorn wasn’t born to a normal family, we don’t expect a normal child.
Henk and I make a point of socializing Bjorn as much as possible. We take him almost everywhere where he is always showered with love and attention and passed on from the one hip to the other. We are very social people so Bjorn is exposed to different people all the time. Up until now no one has asked us if there’s something ‘wrong’ or ‘different’ about our child. Either they do not notice, already know, or are too polite to ask. Even though we are just starting out this journey I do not stress two hoots about the future.
Our family is our biggest support system, especially my sister – who moved from Cape Town to be with us – and Henk’s brother, Willie, who moved to the same apartment block. We’ve also received a lot of support from people we’ve least expected it from, for instance Henk’s staff at Capital Craft has literally brought me to tears with their kind deeds. Bjorn has brought so much healing to both our families; mended and strengthened bonds, and taught us what it is to love each other unconditionally. Our son has brought a sense of peace over us. We’re not that easily fazed bout the hustle and bustle in the outside world anymore. It takes a lot to rock our boat.
Follow their journey here.