Karlien reached out to me via Learning from Luke after receiving a post natal Down Syndrome Diagnosis and I am eternally grateful that she did. It has been an absolute honor to watch you and your beautiful family grow in strength and in love and I cannot wait for what is in store for all of you.
Enjoy reading Karlien and Mark’s touching journey and fall in love with Oliver’s beautiful soulful eyes.
Oliver is dressed by The Little Closet
All images are by Derryn Schmidt
At any moment my paediatrician will tell us that he is looking at the wrong file, that he has made a mistake, that he is not talking about our child. It just cannot be, I’m convinced that he has phoned the wrong family to break the news to them. Little did I know that it would turn out to be the right family, my family, our son and if you ask me now, 9 months down the line – Oliver is our greatest blessing.
Mark and I tried to have children for quite a few years. After heartache and many bouts of depression, I fell pregnant with our first child, Esmae. Our strong, wilful but delightful and beautiful little girl. After falling pregnant again unexpectedly and then having a miscarriage on my daughter’s first birthday, I never imagined being pregnant again 4 months later. Mark and I were thrilled and from the start I knew that we would have a little boy and his name would be Oliver.
I had all my routine check-ups and scans and at 12 weeks when my obstetrician recommended the Down Syndrome screening test, both Mark and I made the decision to decline the test. The outcome didn’t matter, we would not terminate, and we would love our child unconditionally. In our hearts we believed that we would have a normal pregnancy and never again considered that we would have any risk for Down Syndrome.
Due to my previous pregnancies and miscarriage, my obstetrician considered me a ‘high risk’ pregnancy and watched me extremely closely to ensure our baby was healthy and safe. At 35 weeks my blood pressure was dangerously high, and we had to do an emergency C-Section. I remember being so excited and couldn’t wait to meet our Oliver, to feel him feed at my breast and have that amazing bonding moments with him.
In those first 24 hours we struggled through Oliver not feeding, being very lethargic, becoming extremely dehydrated and jaundice setting in. He was so incredibly tiny, and we didn’t know how to hold this skin-and-bone little boy, who seemed way too weak to have left my womb so early. I knew looking into his eyes, as tears streamed down my face, that I would do anything to ensure his survival, even if it meant hand expressing and dropping the only two drops of breastmilk I had onto his tongue.
Our paediatrician came into the hospital room and said that he suspected that we would need to test for Down Syndrome. I felt all the blood drain from my body and had that out-of-body experience I so often hear people speak about. Sitting in that hospital bed, I felt as though my world had fallen away; I felt alone, fearful, abandoned and very sad. I remember praying to Jesus and asking Him for a miracle, never in my wildest dreams did I once stop to think that Oliver was our miracle!
In those few days and weeks after Oliver’s birth, I was my own worst enemy. Looking for anything that would explain the possible diagnosis away. Dr Google became my addiction. I read article after article about the statistics around Down Syndrome – 1 in 700 babies are born with Down Syndrome every year; Congenial Heart Defects, hearing loss, Leukaemia, high mortality rate, average medical care costs were 12 times higher for children with Down Syndrome… and so the list goes on. But I knew in that moment when I ran my fingers through his straight hair, looked into his adoring epicanthal folded eyes and kissed his little mouth that he was ours and no statistic in this world could change our love for this little man.
The hospital wouldn’t discharge Oliver until we had managed to feed him a certain amount of milk and we had to use a bottle to feed him. He absolutely devoured that feed and I remember being so incredibly happy that I could feed my child, it didn’t matter how, just that I could feed him. I was so proud of my little boy who seemed to fight for life from the moment he was born, and I knew in that moment that everything would be okay.
Then we received the call from the paediatrician a few weeks later to break the news that the genetic testing had come back positive and that Oliver has Down Syndrome.
Mark and I made the decision right there, in my tear drenched PJs, that we would never speak negatively over Oliver, that we would embrace his diagnosis with joy. We knew at that moment that we would fight many of his battles on his behalf and that his life is an open book. His journey is unique, innocent and inspiring. He would be an overcomer in many ways and it is up to us to never limit him in what he can achieve. As parents we wanted to set the tone for how others see Oliver, not one of shame, but one kindness and victory.
Oliver has the kindest eyes and the most beautiful smile. When you walk into the room, you experience Oliver. He draws out of you the most incredible ability to love and without knowing it, you love unconditionally without seeing anything else. He is extremely motivated: every day we see his determination to do the things that other babies can do by now. As parents we have learnt that Oliver doesn’t follow anyone’s milestone guide but his own, he is one-of-a-kind and therefore his journey is unique and we’re down with that!
I was so relieved to bring Oliver home from the hospital, finally feeling like I could start my journey bonding with our little boy, but all I could see whas this massive mountain of fear, uncertainty and despair looming ahead of us. Oliver had multiple bruises on his tiny hands and arms from all the blood test that needed to be done. Already his little hands were wrinkled skin on bone and it wrenched my heart to see him go through it again and again. In all of the chaos and uncertainty, Oliver brought an otherworldly peace to us. Oliver means Peace and we would experience Oliver every time we looked into his eyes or held him.
In the next few months, Oliver had to undergo a few more tests and they all came back normal, I was elated and suddenly that mountain became smaller in the face of Oliver’s victory. At our three month check-up, our paediatrician referred us to a specialist cardiologist paediatrician to scan Oliver’s heart for abnormalities. I remember feeling sick to my stomach for days. I just couldn’t imagine open heart surgery on what seemed like such a tiny little heart. I started to think the unthinkable – would my child die before I do? How would I explain to his sister that the brother she loves and adores is gone? These were feelings no parent should ever have to deal with.
After the scan, the cardiologist told us that we are luckier than most of the parents who sit across from his table, most parents leave devastated and in tears, we get to leave with tears of joy knowing that our child’s heart showed no abnormalities. Words fail to explain the relief we felt at this moment and only once you have been in this situation would you truly understand our thankfulness to Oliver’s Maker, who says that he is fearfully and wonderfully made.
We reset our minds daily to remind ourselves that Oliver is unique and that our dreams are not always his dreams. If I ever have the blessing to share a hospital room with the mom, who, like me – felt sad, fearful and abandoned on that day in the hospital room – I would share with her that it’s not the end of a life or dream but it’s the beginning of the wildest, most rewarding journey she will ever have the privilege of being on. You see, special children get special parents, who through the Grace of God, hold the heart and love of that special and unique little person who can change the world with one smile.
As Oliver’s parents, we are so excited for his future. We might not know what lies ahead and every day might be a challenge, but we are amazed at his determination and happy personality. As a family, we would not have been able to support our Oliver without the love of our family and friends. The unexpected cup of tea or phone call to find how we are has spurred us on, especially when we feel overwhelmed in every way.
Our dream as parents is to see Oliver become who he is meant to be without any limitations hindering him. We would like to see him go to school, have friends, be included in every way and most of all, be happy. We dream of an inclusive society which gives equal opportunities to those who are different to us, to give them the ability to thrive in their uniqueness so that they can achieve their beautiful dreams they have for themselves, just like you and I yearn for every day. All it takes is a kind and genuine smile to make a difference. Have the kind of smile that inspires others to be more and if you happen to see a couple with Down Syndrome child in the shops, don’t stop and say, ‘Ah shame, it so sad,’ rather tell them how blessed they are!