A little extra: A mother’s journey raising a child with down syndrome

Seventeen years ago, a single sentence changed my life forever.

“Your son has Down syndrome.”

I remember sitting there, stunned. The doctor kept talking—explaining, clarifying—but I couldn’t hear a word. My mind was racing.

Why me? Why my child? What does this mean for his future? For our lives?

Beside me lay my tiny baby boy, Jeremy, peacefully unaware that everything around him had just shifted.

That day, I had more questions than answers.

Like many people faced with uncertainty, I turned to Google. For three straight hours, I read everything I could about Down syndrome. Part of me hoped it was all a mistake—that I would wake up the next day and everything would go back to normal.

But something unexpected happened.

After a night of processing everything I had read, I woke up feeling different—stronger, clearer. I looked at my son and made a decision: if Jeremy was going to fight, then so would I.

“Bring it on, Downs!” became my mantra.

Strangely, I never cried. I was scared, yes—but I refused to give fear or despair a place in my heart.

That was the beginning of our journey.

Jeremy had very low muscle tone, which meant intense therapy sessions three times a week. My days quickly became a whirlwind—therapy appointments, rushing home, going to work, and ensuring my older daughter still received the attention she needed.

Looking back, I sometimes wonder how I managed it all.

There were days I was completely exhausted—physically and mentally. But I kept going, knowing I was fortunate. My medical cover catered for Jeremy’s occupational therapy, something I remain deeply grateful for.

Through therapy, Jeremy taught me one of the most powerful lessons of my life: never take the small things for granted.

Something as simple as lifting your head or standing up—things most of us do without thinking—can be an enormous challenge for someone else.

That realization changed my perspective forever.

At two years old, Jeremy took his first steps. I celebrated as though we had just won the World Cup. Every milestone became a victory in our home, and the pride on his face each time he accomplished something new was priceless.

At three, he started school.

I chose to enroll him in a mainstream school because I believed that being around other children would help him grow and thrive. Thankfully, I found a school that welcomed children with special needs.

The day he started, I cried—but they were tears of pride.

My little champion was stepping into the world.

He embraced school with enthusiasm. He loved doing homework and celebrated every small win with the happiest high-fives you could imagine.

But the journey was not without its challenges.

Jeremy’s immunity was very low in his early years. Hospital visits became frequent. Almost every cold escalated into pneumonia, and bacterial infections kept us in and out of hospital.

Those were some of the hardest days of my life. Watching your child struggle with illness is a pain no parent should have to endure.

Thankfully, over time, his immunity improved. Today, hospital visits are rare—something I remain endlessly grateful for.

Jeremy is now 17 years old.

He remains the heart and joy of our home—loving, caring, incredibly friendly, and wonderfully hilarious. His laughter fills our house, and his personality lights up every room he enters.

He loves music. And dancing?

Let’s just say—there may be some competition out there.

People often ask me where I find the strength to keep going.

The truth is, there were moments I nearly broke down. But somehow, I always found the strength to rise again.

Perhaps there is truth in the saying: God gives special children to special parents.

Jeremy has transformed my life in ways I could never have imagined. He has taught me patience, resilience, gratitude—and the true meaning of unconditional love.

One piece of advice from another parent became my guiding principle:

“Don’t focus on what they cannot do. Focus on what they can.”

Those words changed everything.

In Kenya, support for children with special needs remains limited. Therapy services—especially speech therapy—are expensive, and many families simply cannot afford them.

This is why I strongly advocate for early intervention. I have seen, firsthand, how transformative it can be.

My hope is that one day, therapy will be accessible to every child who needs it—regardless of their background or financial status.

Has raising Jeremy shaped who I am today?

Absolutely.

I am stronger. I appreciate life more deeply. I celebrate the small victories that many overlook.

And along the way, I have learned something truly beautiful:

Having an extra chromosome is not a tragedy.

If anything, it simply means a little bit of extra—

extra love, extra kisses, and extra hugs.