She never signed up for this journey – but who does? Doctors gave her son one year to live. Now, her story of raising a child with disability is one of unshakable faith, love, and resilience
A Joyful Beginning Cut Short
Like many women, Wambui was overjoyed when she discovered she was pregnant shortly after marrying her best friend. The joy doubled when she learned she was carrying twins. It was a great feeling that would soon be quickly cut short.
The first devastating blow came when one of the twins passed in utero at 27 weeks.
Then, during a routine check-up, she received more worrying news. Something suspicious had appeared on her remaining baby’s scan.
Initially, doctors reassured her it was just a small cyst and that it would clear itself with time.
But a week later, another scan revealed heartbreaking news. That small ball of water had completely damaged her child’s brain tissue. There was no medical explanation for why it happened or what caused it.
“In a span of one week,” Wambui recalls, “the dreams I had of how I was going to raise my child were shattered.”
The news pierced her heart like a knife. She was numb and overwhelmed with helplessness. To make matters worse, the doctors explained that there was nothing they could do, as any intervention could put the other baby at risk.
So she carried them both to 37 weeks, weeks filled with a mix of worry, anxiety, endless prayers, and the uncertainty of what lay ahead.
“I wasn’t sure whether I was supposed to grieve or to be strong for the living baby.”
For the first time in her life, Wambui felt utterly forsaken. “The emptiness was so real. I was honestly in a state of confusion. I was lost. I couldn’t understand why God allowed that to happen.”
The Reality of Raising a Child with Disability
When her son was born, reality set in, and this broke her heart. The thought of her son not growing normally became so heavy on her. The doctors gave no clear prognosis, and as a new mother, she had no idea how to advocate for him.
Honestly, she was not in a good place mentally and emotionally to ask questions. She adds that fear got hold of her, and everything around her became dark.
For months, Wambui lived with uncertainty about her son’s condition.
However, when her son, Mumo, was 7 months old, he was officially diagnosed with Hydrocephalus.
This condition causes fluid buildup in the brain’s ventricles, which creates dangerous pressure on the delicate brain tissue. In Mumo’s case, the pressure had already caused damage to his brain.
With the diagnosis came life-changing news. “You don’t expect this child to go past one year,” Mumo’s pediatrician had said plainly. This news shattered the little hope Wambui had managed to hold onto.
At the time of this chat, Mumo is 4 years old, a living testimony of God’s power. He has defied every odd, and we continue to believe in God.
“We went through the most trying season of isolation. Many family members distanced themselves; they did not want to be involved or engage with a child with a disability. I can count on one hand the number of family members who came to see my child,” she recalls.
The emotional toll of raising a child with disability was overwhelming, especially when support seemed scarce.
“In fact, no one except my mom has ever come to see my child. Four years later.”
Nights were filled with tears, questions, and deep conversations with God.
“I didn’t understand why, but one thing I knew for sure—if God allowed it, He would give me the grace and courage to care for my son.”
The rejection stung even more when a family member visited, not to offer support but to suggest she had been cursed and needed cleansing for her child to be healed. But by then, Wambui had made her choice. She chose faith over fear.
And God did show up for her.
God has continued to meet her family’s needs in ways they have never imagined. She has grown more confident, and she continues to evolve in her role as a full-time caregiver to a child with special needs. “I am not as overwhelmed as I used to be.”
She acknowledges it’s a challenging journey filled both joy and many unique struggles, but she chooses faith time and again. She adds, “I am blessed to have a supportive husband.”
God has met the gap in her family and given her a tribe of women who understand her journey. She tells me, “Even you Maggie, reaching out to me today is a sign that God is mindful of me,” she says with a smile.
One of the most powerful things Wambui has done is release the expectations she once had of family and friends. “I thought they would help with care, offer support, and walk this journey with me. But God has worked on my heart. I have let go of the bitterness from expecting things and help from them; I have learned to let things be.”
Raising a child with disability has shown her how to release expectations and trust God’s plan for her family.
Advice for Parents Raising a Child with Disability
I asked her what she would tell a parent who is raising a child with disability.
“Number one. God!” she says with conviction. “God has to be the source of our strength. God has to be the reason why we wake up. God has to be the reason why we even want to take care of our children.”
She pauses thoughtfully before continuing. “Caregiving is different for everyone. It’s not the same for me as others. Embrace your journey, and don’t see it as just another responsibility God has given you.”
She tells me that if we don’t embrace our journey, we will start looking at the people we care for as a burden. But when you embrace what God has blessed you with, there is hope in that he will provide the grace to love and to care for them if he allowed it to happen.
“Embrace that child, no matter what stage you are in your journey. Embracing comes with freedom and a delightful heart.”
As we wrapped up our chat, I asked her about self-care for caregivers. She nods knowingly. “What I’m learning in this season is prioritizing myself. If I don’t take care of me, I won’t be able to take care of Mumo,” she says. “It’s the small things like taking a bath, brushing your teeth, etc that matter. When you’re a caregiver, selfcare is not selfish. It’s necessary.”
