Ruvarashe’s Story

Ruva, ‘My flower.’ My experiences and journey with my child with Down syndrome.

The day Ruva was born, l, like most parents was elated at the arrival of this long awaited baby. She was born prematurely and nicknamed ‘Gundwane’ (Little Mouse ) by the nurses at the hospital, because of her extraordinarily small size.

All was well until day two, when my joy was temporarily cut short because this is when the diagnosis came in and I was told by the doctors that my child had down syndrome.

People have various incorrect beliefs as to the causes, One of the biggest being bewitchment, or that the mother has somehow sinned or did something wrong and that such calamities can only be rectified by traditional knowledge systems.

The community we live in, did not make it easy because of these preconceived beliefs, behaviors and such questions such as ‘What’s wrong with your child?’, ‘Why doesn’t your daughter grow or gain weight?’, ‘Why does your child look different or funny?’. The greatest upheavals and our ongoing uphill battle, of Ruva’s journey has been her heart condition.

Research reveals that most children born with down syndrome, often have heart and or other underlying challenges. Ruva is almost always sick, and is admitted at the hospital so many times we have lost count, the hospital has literally become our second home. At times she  can be admitted over 6 times in a year.

The medication Ruva needs to survive, is not only scarce but very costly, as a result l am almost always in debt, being in debt has become a lifestyle with my meagre salary. The most painful part, came about when the medical professionals told me, they could no longer help us, as Ruva cannot be operated on, because our country has no medical skills and resources to undertake open heart surgery. And unfortunately we couldnt afford to go outside the country to seek further assistance.

I recall being candidly told to, ‘just wait for that day when your child will be taken away by the Lord.’ Ruva’s illness has affected almost every part of my life, from my performance as well as attendance at work, to my social life, l cannot visit my relatives who stay far away fearing my child may fall sick and require urgent hospitalization in a High care ward. ‘Mwana wangu akandishungurudza pekutanga (my child tormented me at the beginning), but to me she is a blessing.’ However in spite of all that, l love my little precious flower so much.

Ruva has taught me to be courageous, to be without fear and to face challenges as they come. I have heard a lot, seen a lot and learnt a lot socially, financially and spiritually. My experiences with my daughter have taught me to be humble and made me to  be mature. Above all, l have learnt so much about down syndrome, today, l can counsel others in similar predicaments because of my first hand experiences, this has enabled me to build lifelong friendships. My child is a blessing, she is my flower, talented and ever smiling.

All in All – God is good. You know, even the doctors who had given my daughter an ‘expiry date’ years ago, are shock when they see her now because l chose never to give up on my child. I told God that, He knows, He is the one that gave me my little flower, it is Him that will provide whatever is needed for me to look after her.

I don’t blame God for anything, if at all, l thank Him for entrusting me with His beautiful flower. I thank God for my family and work colleagues whose moral and financial support l am indebted to. My words of encouragement to parents with similar stories are, you should love your children no matter the disability, as children are a blessing to us. Never give up, face whatever challenges come with courage and remain strong for your children. Never allow yourself to be discouraged by what people say or think. Always work hard for your children.

(Mai Ruva ( Ruva’s Mom ) – Zimbabwe)