Marvyn recalls sitting in front of the hospital theatre doors when the baby was born. What was supposed to signal a moment of great joy became a moment of silence. Babies cry when they’re born, but not this one. Something must be wrong, he thought to himself. Leaving the professionals to do their job, he remembered the moment he discovered that his wife was pregnant.
Pregnant with their second child and like any other any couple, they were excited in anticipation of the arrival of their daughter. This was a delightful moment for both of the parents, who already have a boy together. They took the news as a blessing and looked forward to raising their daughter.
But the good news was almost forgotten seconds after the delivery. “When my girl came out she was in an incubator because she had difficulties breathing, but still then we did not know what the problem was.”
For three weeks, she remained on the machines and after a few tests, the doctor conveyed that their daughter was diagnosed with Down syndrome. This was life changing news for the parents.
What do you do when your biggest blessing turns out not quite as expected? When you now have to accept what you get, love and cherish it because you still consider it as a blessing from above ?
Marvyn Pescha and his former wife were forced to live with the most unexpected circumstances imaginable. After receiving the news, Marvyn says they allowed themselves to be sad for a while as they had to remain strong for their daughter.
“I spent hours researching Down syndrome and sought for help from friends, family and those in the know. As a father of a 13 year old boy, this was so new to me. We sat down as a family and decided to make peace with the blessing and we were ready for life ahead.”
Down syndrome is a chromosomal disorder caused by an error in cell division that results in an extra 21 chromosome. The condition leads to impairments in both cognitive ability and physical growth that range from mild to moderate developmental disabilities.
After a whole month they were finally able to have their baby girl in their arms – and the impact of the change that brought full delight accompanied by enormous challenges arrived. “She was still beautiful.”
At the age of three, she could still not speak or walk notwithstanding the special attention they put in. It was at this time when the parents called their marriage quits, resulting in Marvyn being awarded full custodianship of Marscha.
“Oh it was hard, but it makes you appreciate the situation more because you get to realize that there are parents out there who do not have the opportunity to have children at all and would do anything to have one. I asked myself, where I would be if I was not blessed with this girl.”
With the help of a massage specialist, beautiful Marscha started crawling and eventually walking slowly but surely. Marvyn reminisces and reflects on his struggles starting with finding a nanny to stay with his daughter while he was at work. Somehow they never lasted because they did not understand her condition.
A year later, Marvyn met his current life partner, a kindergarten teacher who had sound understanding of Marscha. “She has been very instrumental in the raising of my daughter who she regards as her very own.”
Due to work commitments, Marvyn travelled, leaving Marscha in the hands of his partner.
“I remember coming home after that trip and Marscha could finally utter the words ‘mama, and ‘papa’ – it was such a special moment in my life. Of course my partner understands her better than I do and at times she would help her translate messages to me. She is just such a blessing.”
“I thank God for the daughter that we have in our life. She is a bright star in our house. My partner has a daughter also so when we buy clothes, we buy them in pairs where they both end up looking like twins. We try to bring them up like sisters.”
Marscha likes singing, a talent her father highly supports. At home, they would take a mic and allow Marscha to sing. Play the local hit by One Blood ‘Warakata’ and see how Marscha glows to her favorite songs. “You can see her expression to the songs. She loves it but the only difference is that she cannot sing properly to the tunes. She makes me so happy.”
Having struggled to get her into a school, Marscha has finally entered school at the age of nine and even the school feels her presence. She likes coloring and together with her younger sister, they would sit and color together.
Together as a family, they travel together and share endless special moments. Marvyn recalls the very first time they went to Swakopmund and Marscha saw the ocean for the first time. Another is on her fifth birthday when she blew out all her five candles without any help. “We are indivisible and a happy team together. When I look at her breathing every day, it is a special moment for me.”
At the recently held ceremony for children living with Down’s syndrome in Windhoek, Marscha was part of a crowd of her peers, where she mingled and made friends with other children as well.
“All parents should realize that there is light at the end of the tunnel, even though it may be a challenge. No doubt, that can drain you emotionally as it requires a lot of tenacity, courage and finances.
As a parent of kids living with the disorder have to give everything they have at their disposal to help their child. One thing for sure is that people should not keep them in hiding. It’s not an abnormality, but a challenge that everyone can overcome.”
“I would like to see my daughter grow up to become self-reliant in life. I want her to do something she loves. I want to know that when I die, my daughter will be able to take care of herself.
I would like her to live a normal life were she feels that she is in control of her life. I would just like her to have a successful future.”