GIVEN TO US FOR A REA­SON

Janene Rhoda has come a long way since her baby was di­ag­nosed with Down syn­drome

Your Baby & Toddler - - Your Special Needs Baby - BY DIMAKATSO MOTAU

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

21 MARCH IS WORLD DOWN SYN­DROME DAY

Mcken­zie is due for a sec­ond heart op­er­a­tion this win­ter.

Mcken­zie Rhoda and her fam­ily love spend­ing time in the sun.

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