Here is my Story.

It was in the year 2000, around August, when I found out I was pregnant, the pregnancy was totally unplanned but welcomed. It became an exciting journey for us as a family as we started preparing for this bundle of joy, our first born, until I was 7 weeks pregnant and started going through some complications. I got referred to see an Obstetrician and Gynaecologist and this followed by some tests:

• a blood test to measure the amount of certain proteins
• an ultrasound to measure the amount of fluid at the back of the baby’s neck, called the nuchal translucency. This was about 11 – 14 weeks of the pregnancy.
• an amniocentesis done around 20 – 22 weeks of my pregnancy to diagnose or rule out Down’s Syndrome by checking the chromosomes in a sample of cells, that was the scariest moment as we prepared for the unknown.

At 24 weeks, we were called by the Obstetrician and gynaecologist’s office. What I have observed with life is that good news is somehow easily delivered over the phone, but the moment you get called to the consulting rooms or hospital, you already know that something is wrong.

That was terrifying, anyhow, that’s how we got to find out that Jabu has Down’s Syndrome, and we were given an option to terminate or keep the baby, with some time to think about it. The decision was made to have Jabu, and by the way, early in the pregnancy, I was already called Jabu’s mom by his uncle even though I had a name, which was overpowered. Jabu was born on the 17th April 2001.

Raising a Child with Special Needs!

As much as I had read a lot about Down’s Syndrome, it never prepared me mentally for what was about to come. After birth, he was rushed to theatre for the immediate repair for jejunal atresia, a rare condition that occurs when the small intestine is blocked in the jejunum, the second part of the small intestine. He was in ICU and eventually discharged after a month.

Support structures are very critical when you are going through a difficult time and I am very grateful for my family and friends for walking this journey with us, as it was not an easy one. You become physically and mentally drained, it can test your patience, your relationships, hence it is important to reach out and connect with them.

His journey was filled with a lot of hospital visits, health issues such as chronic bronchitis, sometimes pneumonia. What would be a ‘normal cough’ for me and you, to him it was an emergency, as much as we tried to integrate him into the community, one day we found ourselves having to drive to Polokwane (then Pietersburg) at 22h00 to pick him up from my parents as he became gravely ill.

We navigated that journey with him, and we are proud to see him as a young man he is today, free of most of the chronic conditions that overwhelmed his life. Jabu has been through various special schools, and we are very grateful to them as they really supported him through his life journey.

Those institutions are:

• Catherine’s Kindergarten reasonably accommodated him, then
• Footprints Special Needs School, then
• Casa do Sol for learners with special educational needs until he was 21 years of age. He is now at
• Hodnett House a day care facility that caters for people living with intellectual disabilities from the ages of 18 years. Jabu has developed a passion for archery (check their website for his pic) and he’s going to start competing in 2025. Well I thought it was an easy sport until I tried and I was humbled, saw some flames, that’s all I can say.

Raising a child with special needs patience, I believe all children are a gift, they need love, understanding as they are unique in their own special way.

It has been a journey and a humbling one to walk with Jabu as he continues to make a mark and footprint in this world. Despite the odds that were set against him, he DID it! He is good enough as he is for us. As a parent/s of a child or children with special needs, do not despair, help is there. You can join support groups for children with various special needs, do not walk this journey alone. Ask for help.

Are you raising a special needs child, have you just received the diagnosis and unclear on how to travel this journey?

Get in touch with me, should you need counselling or support…