We are the Raizenbergs.
Our journey with Down Syndrome began at our 12 week ante-natal scan. Only one marker was picked up. The nasal bone was under developed. The rest of the appointment focussed on Non-Invasive Ante-Natal Testing (NIPT), Amniocentesis and based on the results possibly terminating the pregnancy. When we got home we didn’t know what to do. This was our first pregnancy. It was one week before Christmas and our spirits were shattered.
So we did 2 things:
1. Prayed for guidance to make the right decision, and
2. We needed a distraction, so we went Christmas shopping.
In one of the shops we came across a little plaque with a verse from the bible 1 John 4 vs 18: Perfect Love drives out fear. It didn’t take away the reality we were facing but it bring peace to our hearts.
We are neither Saints nor Pro-life activists. We merely chose what we felt was right for us at the time. And needless to say we chose to carry on with the pregnancy and have never regretted our decision.
When the doctors put Jessica into my arms. It was love at first sight. The first thing I noticed were her beautiful eyes – beautiful almond shaped, upward slanting eyes. She also has low tone, small thick fingers, a wide space between her first and second toes, small ears and an enlarged tongue. Not every person with Down Syndrome will have all or the same features, but one thing is true across the board – people with Down Syndrome still hold a strong resemblance to their families and I think that’s awesome.
I remember having a conversation with one of my besties when Jessica was 2 weeks old. She called to find out how I was doing and I broke down. I was worried about Jessica’s cardiac condition (she had 2 holes in her heart: a Patent Ductus Arteriosus and a Ventricular Septal Defect), she had also failed her AABR hearing test and developmental delays were inevitable. What did her future look like?
My friend’s advice to me… Stop thinking about her limitations, Focus on her possibilities!
Jessica is 5 years old at the moment and she does have delays/limitations which we have to acknowledge but we choose to focus on her strengths and celebrate all the little victories.
Her moto is “I can do it!”
She will practice something over and over and over until she has perfected whatever skill she was working on. She then calls us to watch her and proudly say ‘I can do it!’
With the dawn of COVID-19 we chose to stop Speech Therapy and Physiotherapy (she was not yet referred for Occupational Therapy). But I can honestly say that the best kind of therapy for Jess is Sister therapy! She has twin sisters who are 3 years old at the moment and she completely thrives off them. She WANTS to keep up with them. Whether it be running, jumping, riding a bicycle, playing hop scotch or even climbing up the burglar bars.
Jessica’s vice is Chocolate. Recently though we decided to cut back on chocolate at home and stopped buying any. During one of her chocolate craving moments she came and asked me for a “BIG, BIG chocolate”. I replied with a little white lie that Checkers doesn’t sell chocolate anymore. She looked distraught and almost shouted “and Woollies?” (lol). At the moment her pronunciation is improving nicely but if the adults around can’t quite understand what she is trying to say we call our in-house interpretors… Her sisters. At 3 years old they have an innate ability to understand their big sister.
If this all sounds too easy…It’s NOT easy. There are MANY things to consider. Many added conditions that creep up on us. And every time that happens it feels daunting. But we have such an amazing support base and when we lose hope they point out all the little victories and celebrate with us.
This is our story of celebrating all the little victories. And when we look back we realise that all the little victories are (in Jessica’s words) BIG, BIG victories
Thanks again
Kim