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Our family is a bit different from other families

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.

heart_love_favorite_circle-512 Follow their journey here.

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33 Comments

  • Reply Marinda September 11, 2015 at 7:55 pm

    I always felt that parents with down syndrome babies are hand picked by the Lord, because He only entrust a very special people to take care of His most precious “hemelkindertjies” You are indeed blessed.

  • Reply Petri July 30, 2015 at 12:01 pm

    I gave to a boy with DS for 3 years while I was studying. Although sometimes it was difficult to get his cooperation and to work after 7 hours of class at Uni, I will do it over and over again. He had a way of making my days beter and giving so much love. Good luck to the journey ahead.

  • Reply Karien July 27, 2015 at 2:51 pm

    What a beautiful story Celeste & Henk ( my cousin). May God’s Grace be upon you Bjorn!

  • Reply michelle July 20, 2015 at 2:34 pm

    Your boy is gorgeous. I LOVE PEOPLE WITH DOWN SYNDROME. They are honest, real, and radiate love in a way that us “normal” people never could!

  • Reply Andrew Maffessanti July 17, 2015 at 9:05 pm

    What a precious gift. Having a son with Down syndrome has taught us to be patient, humble and to live in the moment. Thomas is 9 years old and there isn’t a day that goes by that he doesn’t teach us an important life lesson. Thanks for sharing your story.

  • Reply Lauren Abdo July 17, 2015 at 9:10 am

    You have the most beautiful child! Yes he may be ‘different’ but he’s still the product of the two of you and the love you share. Enjoy him. Beautifully written

  • Reply Marli July 16, 2015 at 6:50 pm

    You have the most beautiful boy!!!!!

  • Reply Priscilla Prinsloo July 16, 2015 at 2:46 pm

    I can relate to mostly everything you wrote… the manner we found out about my son’s Estiano’s diagnosis.the mixed emotions…his heart surgery…but through it all we realized we were blessed to have him in our lives..Just looking at him makes you see life in the most beautiful colours. I thank God every day for my little angel

  • Reply Berdien Tenten July 16, 2015 at 1:33 pm

    Wow, loved your story. It seems to me that all our stories got the same kind of thread through it. Our princess was born 12 November 2014 and was diagnosed 3 days later. We also had a paediatrician that had no bedside manner and just told us at birth…uhhh i think you need to test for Down Syndrome. It ripped my heart out of my chest. We cried and blamed ourselves and tried to figure out what we had done wrong to hurt our baby. Well after working through all the emotional stuff, i just decided that this is the beginning – not the end…and our story unfolded. Our princess is the most beautiful and awesome girl ever! We share her, her story and our experience with everyone. God declared so much promises about her during my pregnancy and i couldn’t believe that all these promises are suddenly none and void with this diagnoses….in the mean time it was such a lie! All the promises was true and is true!!! God showed me that every perfect gift is from Him and Yeva (meaning full of life / life giving) is also a perfect gift from Him. Even though the wrapping she came in is according to the world, not perfect, she is. We love and adore people not for how they look but who they are inside. And now, 8 months along the road, she is perfect as she was the day she was born….inside and outside. Maybe one day Bjorn and Yeva would meet and have a leka chat about all their life experiences. Its our duty as parents to give to them as much as we can for as long as we can. I decided because there is so little our paediatricians know about DS or how to reach out to new moms and dads or even expecting moms and dads; i am going to reach out to our local hospitals and doctors and offer a support group so that people can see that the diagnoses is not a death sentence (like you said!). I read this amazing statement today…..having a child with Down Syndrome is like taking the scenic route. You still get where you are going. It may take a little longer but it will be well worth the trip….Show them BJORN!!!! Feeling so blessed to have read your story! You are a WARRIOR! Blessings, Mommy Berdien from Paarl, Western Cape

  • Reply Tumelo Bokgwathile July 16, 2015 at 9:35 am

    This is so beautiful, it’s amazing how strong a parent’s love is. You are so blessed and God picked the right parents for Bjorn,

  • Reply Louise Kapp July 16, 2015 at 9:23 am

    Amen!! May the living God always provide you with enough strength to take it day by day, may you receive lots of wisdom from Holy Spirit,
    thank you so much that you decide to handle him as a normal baby, he will always appreciate it! he is a beautiful little boy!! on the end, Love is
    the answer to all our problems!

  • Reply carol roos July 16, 2015 at 7:28 am

    What a great mom you are. The days of youngsters with Downs being regarded as retarded are fortunately behind us. One young woman has just landed a modelling contract and we are seeing more and more of them on both the big screen and television. Learning lines and taking direction just proves how incredibly bright they are. Your lives will certainly be enriched by your little Angel. May he always feel the presence of God in his life.

  • Reply Anonymous July 16, 2015 at 7:25 am

    Such a beautiful post! Amazing to see how even the worst seeming situations can bring joy and healing.. All the best guys!

  • Reply Alon Cohen July 15, 2015 at 10:58 pm

    This brought me to tears, so proud of your attitude and outlook and I don’t even know you personally!

    Your child is already bringing light and good into the world through you guys, and the socialising will turn him into an absolute legend.

    Carry on being proud and awesome 🙂

  • Reply Joey Bornman July 15, 2015 at 10:47 pm

    Wow!! What an amazing story!!! I just love Bjorn in his red addidas outfit! Your family is different but inspiration to all!! Little Bjorn is a bundle of love, and all we need is love! Praying with you guys!! Bjorn- jys ‘n dapper held van God!

  • Reply Jayde Dunlop July 15, 2015 at 10:46 pm

    Beautiful story! There is absolutely nothing wrong with Bjorn. I have to admit, I got a little upset when I read the part “Some prayed that he would die in the ward (so that he won’t burden us)” – It upsets me that some people feel this way, and its purely because they are uneducated about Down Syndrome. I have 2 amazing parents that dedicated their lives to bringing up my sister (who also has dwen syndrome) and she is doing so incredibly well. It is tough, but they are absolute angels sent from above. She is such a blessing in our life. Please don’t hesitate to contact me if you have ANY questions at all. All the best and enjoy this amazing bundle of joy.

  • Reply Willem Walt July 15, 2015 at 10:11 pm

    Wow!! I can’t imagine what intense emotions you guys must have gone through up until now, but truly think that the intensity will be multiplied by happyness. May the 3 of you be blessed beyond compare.

  • Reply Danielle July 15, 2015 at 9:59 pm

    Bjorn is such a beautiful boy and I know he is a gift sent straight from heaven to you!! I was oohing and ahhing at every photo of his! I have a cousin with Downs – he is now 30 and he has competed in swimming events all over the world. He has numerous gold medals and world records – he has accomplished so much and we as his family are so proud of him. He also recently got engaged to such a sweet young lady – also with Downs. They are so happy – it’s both beautiful and inspiring to see! If Bjorn is anything like my cousin, your lives are going to filled with endless love, affection and sincere adoration. And I have to say, you sound like you’re doing an amazing job! God bless your beautiful family! ❤️

  • Reply Alexi Portokallis July 15, 2015 at 9:25 pm

    What a F&$king inspiring blog post about you two and your awesome little one. Hope the future hold more gifts…

  • Reply Anna Heymann July 15, 2015 at 8:23 pm

    You guys have been blessed with an extremely special soul! He will bring tremendous light into your lives.

  • Reply Meg July 15, 2015 at 3:35 pm

    Such a powerful, wonderful and happy blog post to read. Thanks for sharing. All the best to the 3 of you!

  • Reply Tilana Jooste July 15, 2015 at 3:32 pm

    Hi C <3

    Sending you this heart because this is is so beautifully written and heartfelt.

    I have had the privilege of meeting your fiance through my boyfriend, Cale and he is such a nice human and I can tell the same about you.

    Your story is amazing. Thank you for sharing!

    xoxo
    T

  • Reply Jonelle July 15, 2015 at 3:08 pm

    A beautiful love story of an incredible family… what’s normal anyway!
    <3

  • Reply Jacqueline Zeeman July 15, 2015 at 2:13 pm

    Beautiful… I’m a mom of a 4 year old girly and a 2 year old boy. We always said during both pregnancies that we would deal with whatever we were dealt with… Children are beautiful gifts.

  • Reply Aimee may D'onofrio July 15, 2015 at 1:47 pm

    An amazing article and a beautiful perspective to have on life, my neighbours daughter has CP and is ones of the most beautiful humans I have ever encountered. At 3 she is nothing but a ball of light, and you are exactly right. Love changes everything. ♡ I wish you both great luck and happiness xxx

  • Reply Ross Coetsee July 15, 2015 at 1:43 pm

    Bjorn is so beautiful, there is nothing ‘wrong’ with your baby sweety. My friend in school had an older brother who also had down syndrome but a very severe case but regardless of the situation he was the most loving person you’d meet and he’d love to dance with his mother and sister in the evenings. With the treatment and support available these days I can only see hope for your family. Bjorn is an inspiration and seems like a happy beautiful boy. Good luck further sweetheart. Sending you guys nothing but good joojoo. X x

  • Reply Mischka Grobbelaar July 15, 2015 at 1:42 pm

    Amazing Celeste, ive been following Henk on facebook probably around 3 years now, Bjorn is gorgeous and you can see he already has his own special personality ! you guys are great parents, stay strong !

  • Reply Nopinki Dafeti July 15, 2015 at 12:37 pm

    Wow, beautiful article that brought me into tears. Well done you are raising an amazing cute prince there!

  • Reply Chereen July 15, 2015 at 12:26 pm

    Thank you for sharing this amazing story. What a beautiful family!

  • Reply Rone de Bruyn July 15, 2015 at 10:28 am

    As a non- mother I have often wondered how I would react in this situation as the “D” word has such a particular connotation.
    After stumbling across this instagram account https://instagram.com/amanda_booth/?hl=en I realised, NORMAL is a relative term.

    I know from what you have written that this little Bjorn will have an awesome life experience on earth! And your life will also be “less silly and vain”! Thanks for sharing this! Your thought process on paper have broadened my opinion today 🙂

  • Reply Elisma Roets July 15, 2015 at 10:00 am

    Oh my goodness. GO CELESTE! GO HENK! GO BABA BJORN! This article made me cry. So beautiful. I’m with Karla – hey mama!

  • Reply Nicola Momberg July 15, 2015 at 9:51 am

    what an amazing article!!! Thanks for sharing! X

  • Reply karla roodt July 15, 2015 at 8:51 am

    Wow. What an amazing article. I love her honesty on the initial acceptance of the situation. People don’t often share the negative emotions, only the “pretty” stuff people want to hear. Bjorn is gorgeous and I can only imagine what an awesome dude he is going to be! Well done for breaking the silence on this sensitive subject, hey mama!

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