I am Innocent and they wanted me to die.
At the hospital they called me a “waste of oxygen” and chased my mum away. I had been into the ICU 19 times. I am Innocent. I have Down Syndrome. I am a God Plan. My mum tells me I am a God Plan.
I am Innocent and my father disowned me. Told my mum to “throw” me. To abandon me, in Gulu in Uganda, where we live. I am Innocent, I get infections easily, I took a long time to walk, a longer time to eat or drink than other children. I am different.
My grandma said that I look different, called me abnormal. Asked my mum to throw me. Her family disowned me. I like to dance. I am five years old. I am Innocent.
I am Innocent and while I did not, could not, write these words, I’m important too.
INNOCENT IS NOT ALONE.
Innocent has friends. There’s Misheal, five years old, who cannot take herself to the toilet, and Viola, whose neighbours wouldn’t pick her up or let her play with other children because they thought that Down Syndrome was contagious. There are many other children like Innocent, who are beautiful and friendly and joyful and kind, and who have been rejected by family and neighbours and society. Whose parents have suffered depression and financial hardship because people around them have not understood what Down Syndrome is.
“I’ve done a lot of the diagnosis,” says Lois Ovenden, a BMS World Mission worker based in Gulu. “People notice that there is something not typical, but they won’t know what it is. And sometimes doctors won’t give the diagnosis, even if they know it.” You can understand why. In Uganda, as in many countries, there is a stigma attached to disability, and reactions range from fear and disdain to blame. And there are practical problems too. Care is time-consuming and expensive. The children themselves can be challenging, as every one of their mums can testify.
THE STORY SO FAR
Good news for parents of children like Innocent doesn’t just happen. It needs a ‘how’.
IN THE BEGINNING
Lois, a BMS speech therapist, started a group in September 2017 when she realised that many of the mothers she was meeting had not understood (or even received) a diagnosis of Down Syndrome for their children. They felt isolated and confused and so Lois brought them together to talk, share wisdom and dispel myths. Many felt amazing relief at knowing they were not alone.
GLAD TIDINGS
In March 2019, Lois organised a gathering of the Gulu Down Syndrome group for World Down Syndrome Day. Mums shared their stories, appeared on a video and gathered to talk to people in the community about what Down Syndrome is and the gift from God that these children are. A local radio and TV station picked up the story and spread the word even further.
GO INTO ALL THE WORLD
Radio and TV exposure meant that more people heard the message of hope offered to parents facing stigma, pressure from unsympathetic families and the challenge of taking care of children with special needs. A new group is hoping to start up-country as a result.
These parents were given the chance to help each other and themselves because of you. Your support for BMS makes work like this possible. If Innocent is ‘why’ we do what we do, you are the ‘how’.
Thank you for being our how.
Lois has met so many mums because their children had developmental problems. She’s a speech and language therapist working in a local clinic, and children like Innocent and Misheal and Viola will be brought to her because they have not yet been able to speak. And it’s Lois who has broken the news to their parents.
“Sometimes doctors have told people that there’s nothing to worry about, that their children will catch up,” she says. “The fact is, these children can learn. But they do need the support and input.”
That’s why Lois started the Gulu Down Syndrome group. To share knowledge, to connect parents with a local school that integrates children with special needs into its classes so they’re not excluded. To let parents know they are not alone. “These are passionate mothers who are devoted and loving in the face of discrimination and persecution,” says Lois. “They love with a fierce and unconditional love that tells the world that their children are a gift not a curse, that their children matter and they won’t abandon them, however tough it is.” They are her inspiration. They are each other’s lifeline. And they have grown in love and support.
You can help.
October is Down Syndrome Awareness Month, and Down Syndrome Awareness Week UK is in March. While we give thanks that many children with Down Syndrome around the world are getting the support they need, the world’s poorest and most marginalised parents are struggling to help their precious daughters and sons. That’s why groups like the one Lois started are so important. To help parents help each other and help themselves.
You can support the work Lois does every month by becoming a 24:7 Partner with BMS.
Visit our 24:7 Partners page to set up a direct debit that could focus on Lois’ work or provide support where the need is greatest. And if you already give regularly, thank you for making work like this possible!
Innocent’s mum is called Alice. She’s part of the group. She says that what she most wants other people to understand is that she didn’t choose this. And that she accepts her little boy, as all mothers do: as a gift from the Lord. She wants them to understand that Innocent is not infectious. That he is God-given. Precious. Innocent.
“Down Syndrome is not a disease,” Alice says. “It is a God Plan.”
The message Alice has received from the Gulu group and from Lois is one that empowers mothers to help each other: with knowledge, with support and with a Christian message of love. And it’s working. Spreading. More mums with more knowledge, more support, and more hope. More to say. There are things they want you to know.
Misheal’s mum, Mary, wants you to know that Misheal is normal. Viola’s mum, Lucy, wants you to know that she is proud of Viola. And Alice wants to tell you that she loves Innocent.
“It was God’s plan to give me this child,” she says. “That’s why I have my son, and I love him.”
Lois’ hope is that, with more awareness and provision, children with Down Syndrome in Gulu and beyond will be able to realise their potential and be welcomed and valued members of society. “Our hope is that families will know the blessing these children can be,” she says. “Working with them is a huge privilege.”
And as the message spreads, more people are feeling that privilege. Following a World Down Syndrome Day event that Lois and the group organised in March comes the news that another group might be set up further north. And this group, by God’s grace, will need Lois less and less, as the mums learn to rely on each other and as the community continues to be transformed by the mustard seed of their faith, their hope, and their love for their children.
I AM INNOCENT.
I am not a mistake. I am not diseased. I am made in the image of God. I am a person and I have joys and loves and quirks and funny little habits. I have a mum who loves me. I have friends to play with under the mango tree. I have trouble speaking and I did not write this but I have help. We have help. We have the children and the mums, we have Lois and the doctors, we have a chance to learn and to grow to do something with our lives.
We want you to see us. We want you to see us as you see yourself. We want you to see the God Plan.
This story was originally published in Engage, BMS World Mission’s flagship magazine. Subscribe today to receive inspirational stories of BMS work, just like Innocent’s stories, straight to your door, three times a year!
