Losing a child is undoubtedly one of the most agonising experiences any parent can endure. From the moment a child is held in their arms for the first time, this fear lurks in every parent’s heart. Children have an incredible power to transform our lives and reshape our perception of the world.

A Journey of Support and Connection:

In 2020, ShonaquipSE launched the Parent Network—a national online support community for parents of children with disabilities. Within this space, parents gather to exchange advice, share stories, and connect through their shared experiences. The network serves as a platform for growth, learning, and amplifying the voices of over a thousand parents across South Africa who often didn’t have a voice in the past. It is a place where we celebrate life’s greatest joys and share in the deepest sorrows. Tragically, within the past year, 15 parents on the SSE Parent Network have experienced the loss of a child.

The Story of Tebogo and Lesedi Machete:

Tebogo is one of these parents who has suffered the devastating loss of her child within the last year. Despite her own immense pain, she bravely chooses to share her story, hoping it will provide support to others facing similar journeys, while also ensuring that Lesedi’s memory remains alive. In our conversation, Tebogo describes her situation using the word “away”—her beloved son is no longer here, but reminders of him still exist within their home. His favourite blanket, treasured TV show, his spot on the couch, and the continued visits from his friends serve as constant reminders of his absence.

On 20 March 2022, Lesedi passed away after a five-month hospitalisation. During his time in the hospital, only his parents were allowed to visit, but thanks to technology like video calls, he could still connect with other friends and family remotely. Lesedi has CP and was admitted for pressure sores, and despite undergoing numerous operations, he couldn’t overcome his condition. Remarkably, throughout his ordeal, Lesedi maintained a smile despite enduring immense pain.

The loss of Lesedi left Tebogo shattered and struggling to cope. However, after a few months, she sought therapy, which proved to be an invaluable source of support. Tebogo shares that speaking about her pain, even to a stranger, has been an essential part of her healing process. She has also found solace in online communities, such as the Parent Network and Warrior Mommies, where she has forged deep connections with other parents facing similar challenges. Although she has never met these mothers in person, she considers them to be sisters, and their daily conversations bring her a sense of belonging. Tebogo longs for the day when she can meet some of them face-to-face, knowing that their love and understanding will surround her.

Lesedi’s passing has drastically transformed Tebogo’s life. Her daily routine once revolved entirely around her son; they were inseparable. Now, a void fills her days. Tebogo shares her dismay at the misconception some people hold—that losing a child with a disability might alleviate the burden of care. She rejects this, as she has never considered raising her child with a disability as anything but a privilege. The hurt caused by such misconceptions further magnifies her pain. Tebogo emphasises that losing a child with or without a disability, leaves an indescribable void, unanswered questions, and unrelenting sorrow.

Tebogo is determined to ensure that Lesedi’s light continues to shine brightly. Regularly posting his photos on social media, she shares his infectious smile with the world. Each time Lesedi smiled, Tebogo was filled with overwhelming joy, and she wished to bless others with his radiant smile. She is grateful for the support of her boyfriend, family, and friends, as well as the precious time she had with her son. Since Lesedi’s birth, doctors had predicted he wouldn’t live past the age of three. This made her very angry, and said: “The doctors are not God. God will decide how long my child will live.” With each passing birthday, she remembered the doctor and was thankful for a few more years. Lesedi lived 10 years longer than predicted.

Tebogo implores other parents to seek support in their own journeys. She encourages them to reach out to organisations and individuals who can provide guidance and understanding. In times of hardship, she emphasises the importance of sharing one’s story, shedding tears, and embracing vulnerability, as these acts pave the way for healing. Tebogo’s personal experience has also emphasised the significance of PEG feeding*. If doctors recommend it for a child with feeding difficulties, she urges parents not to hesitate, as it allowed Lesedi to experience a fuller life. Furthermore, Tebogo’s message to the outside world is that we should create inclusive spaces that bring children with and without disabilities together to play and learn from each other. 

*PEG feeding is when a medical procedure is done in which a tube is passed into a patient’s stomach through the abdominal wall. This allows direct feeding into the stomach if a child can’t swallow.

If you would like to join the Parent Network, please send a WhatsApp to 071 371 9103.

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