GIVEN TO US FOR A REASON
Janene Rhoda has come a long way since her baby was diagnosed with Down syndrome
No expectant mother anticipates that her baby will be born with a genetic disorder; so what happens when you find out that your bundle of joy is not who you hoped for?
This is what happened with Janene Rhoda and her husband when their daughter Mckenzie was born three years ago with Down syndrome. This chromosomal disorder is caused by an error in cell division that results in an extra 21st chromosome. The condition leads to impairments in both cognitive ability and physical growth that range from mild to moderate developmental disabilities. Some of the characteristics of Down syndrome include but are not limited to impulsive behaviour, poor judgement, short attention span, and learning difficulties.
ADJUSTING TO A NEW REALITY
“Mckenzie was born seven weeks prematurely, and the paediatrician at the birth suspected that she had Down syndrome. Her eyes gave it away, as babies with Down syndrome have eyes that slant upward. Though I’d heard what was being said around me, I was hoping that it wasn’t true. I didn’t have any idea how to care for a baby with Down syndrome,” recalls Janene. After the initial diagnosis Janene’s first reaction was denial, and she spent a while just crying. Eventually she came to terms with what was really happening so that she could start to embrace her daughter.
“I had a lot of learning to do to ensure that we could give our daughter the best care, along with our other children. I learnt to celebrate small victories and to find our own language, as communication is one of our biggest challenges. Sometimes we struggle to understand what Mckenzie’s saying and that frustrates her. Speech is one of the critical parts of her development and she goes to sessions with a speech therapist,” says her mom. Janene celebrates the fact that her daughter started walking at 23 months and that she has now, aged three, recently started potty training.
FAMILY MATTERS
“My husband and I don’t treat Mckenzie differently from our other kids. We discipline and care for them equally. We just go the extra mile with her and have
a team that’s part of her development, which includes her preschool principal, teachers and therapists. The preschool has two or three more special needs kids and it’s really a supportive environment for our daughter. They have daily therapists to work on their development, which is encouraging as a parent,” she says.
As a family, it’s important for the Rhodas to live life to the fullest, to not be ashamed of Mckenzie or entertain the public stigma. “We all go out as a family. We never leave her behind for anything. We are a unit so we create memories together and do things together. I don’t want her to feel isolated at any time. She’s our child and we love her,” she says.
FINDING SUPPORT
Originally from Cape Town, Janene says they have no support system except for the colleagues and a handful of friends they’ve made in Centurion. “We chose to lean on the very few people that were there for us. Every time our daughter reaches a milestone it’s a victory for all of us and we celebrate together. I’m glad that I have people I can count on,” says Janene. This small circle, she says, is really the force behind her never-die-spirit and she doesn’t take that lightly. Nothing could have prepared her for what she went through emotionally after Mckenzie’s birth, but learning as much as she could about Down syndrome empowered her to be able to take better care of her. She had no choice but to keep going. “I guess there’s no other option. I love my daughter and I can proudly say that I’m grateful to have her,” she says.
FACING FEARS
The most harrowing thing the family has had to go through is Mckenzie’s heart surgery at seven months. Children with Down syndrome often born with heart conditions. Seeing her tiny body undergoing such a massive operation really left them broken. “She’s a fighter! She surprised us and two years later she’s still here with us. I love that even though some days I feel down and want to just give up on this journey of caring for her, her fighting spirit lifts me up all the time. She always tries her best and if she’s not giving up who am I to give up on her?” she says with conviction.
Mckenzie will be having a second heart operation in July to close off a hole that was left open during the first heart surgery. Though she survived the first operation her mother says it’s not easy to just dismiss such a serious surgery as something small. Any operation on a child is quite stressful for the parents. “I try not to think about it too much. If I keep analysing what her little body is waiting for, I just break down. I’ve gotten this far by having faith and believing in teamwork to see my daughter live as normal a life as possible,” she says.
A WORLD OF OUR OWN
Janene says she doesn’t pay attention to public snares or stigma in the community – she refuses to let any negativity hamper her love for her. “If we open the door for all these negative elements; it’s really not going to positively add to the everyday development of our daughter’s ability to grow and be more independent;” she says.
Janene says if she were to choose how to do this again, she wouldn’t change anything for the world. “She was given to us for a reason. We love her and her siblings adore her. We’re a normal family and we have the same challenges as other families – we just have a child who needs extra medical care and we’re fine with that,” she says. YP