The Day My Soul Crashed: A Father's Journey from Shattered to Serving
Guest post by Alfred Niwagaba
Director, Little Angels Primary School - Ntungamo
EDITOR'S NOTE: Today's guest post, an echo of last week's by Nicholas Banura Aine, reminds us of how children can "tenderize" Dads and of the reciprocity of love between Daddy and child. As I read last week's post and today's by Alfred, I'm reminded of what I describe as the pinnacle of parenting: when nurturing your child is nourishing to you. I'm also remembering what a Dad shared during one of my 206 daddying interviews: "Once you have a child, you will never be alone in your heart."
On another note, for these two African Dads, in whose communities there is much misunderstanding of autism and other special needs, it is particularly important to create opportunities for families of such children to form support networks. That is why I'm delighted to join a group of such Dads in Nashville this weekend at a Special Fathers Network retreat. I will be sharing one of our D3F films and leading a post-screening discussion along with my oldest granddaughter, Casey, who is a licensed clinical social worker and Director of Neurodivergent Affirming Services at a local Nashville clinic. – Allan
* * *
My name is Alfred Niwagaba. My wife is Rose. Together, we have four children.
In 2010, we were living in Belgium. Rose was pursuing her Master's Degree at the University of Antwerp. We were expecting our third child, a boy. The pregnancy had been normal. Everything was going according to plan, and we were over the moon.
Then December 2010 came. Our son Abryl was born, and within hours, we learned that nothing would ever be the same for our family again.
The Diagnosis
The doctors told us he had Down syndrome. They told us he had three heart defects. They told us his throat was narrow. They told us he was deaf.
At the mention of the term "Down syndrome," my soul crashed. Everything blacked out. That was not what I had expected. All my dreams of a bouncing baby boy vanished in the first week of his birth.
My wife and I had little to no experience with or knowledge about special needs. We didn't know what Down syndrome meant. We didn't know how to care for a child with heart defects or how to communicate with a child who couldn't hear. We were completely unprepared.
And on top of everything, Rose still had to complete her studies. We were in a foreign country, far from family, community, and everything familiar.
The Longest 18 Months
Abryl survived in the Intensive Care Unit for 18 months.
He couldn't breastfeed, so Rose had to pump milk while he was fed through a tube. Every time she was told to pump milk instead of breastfeeding him, she felt bad, because the bonding of a mother and a child through breastfeeding is one of the greatest feelings a mother can have. Rose was robbed of that.
I remember the sleepless nights. The endless hospital corridors. The fear that Abryl might not survive his next surgery. The loneliness of being a father in a foreign country, far from everyone I knew.
We didn't know what Down syndrome meant. We didn't know how to care for a child with heart defects or how to communicate with a child who couldn't hear. We were completely unprepared.
In Africa, men are not typically raised to do house chores or become the primary caregiver. But I had no option. I had to step up. Rose had to continue her studies. I had to take care of our eldest daughter, Abigail, while Abryl was in the hospital. I had to cook, clean, and be present for both my children, one of which was in the hospital fighting for his life, the other at home wondering why her father was always so tired.
I was supposed to be the provider and protector. Instead, I felt helpless.
The Operations and the Waiting
Over those two years, Abryl was operated on approximately nine times. Doctors closed two holes in his heart. They fitted a special hearing device deep inside his hearing system so he could finally hear the world around him.
He started sitting at the age of two and he walked much later.
Every day, we waited. We hoped and prayed. We watched our son fight for his life, and we fought alongside him – not with strength, because we had none left, but with a desperate, stubborn love that refused to let go.
The Shifting
Somewhere in that chaos, something shifted in me.
I started to see Abryl differently. He wasn't a tragedy or a burden, he was a gift.
Rose said it best:
"In Abryl, I have come to know my strength. He has taught me to be patient. He has taught us virtues of loving unconditionally, irrespective of the ability of someone. He is my best teacher."
And she was right. He was teaching us what really matters, every single day.
Coming Home
We stayed in Belgium for nearly two years, with Rose completing her studies, and Abryl receiving treatment. When we finally made the decision to return to Africa. We didn't just come back to resume our old lives, we came back with a mission.
Rose and I founded the Angels Center for Children with Special Needs, a nonprofit organization that supports children like Abryl and their families. We gave it such a long name because in Uganda, disability is still looked at as "witchcraft" and as something we shouldn't talk about. There is so much stigma even now. We wanted whoever read our signpost to be able to relate and understand what we do.
Rose and I wanted to change the narrative by telling parents that they are not alone, their child is not a curse, and there is hope.
Finding My People
Through all of this, I learned something that changed me even more: that I was not alone.
David Hirsch, a man my wife met, introduced me to the Special Fathers Network (SFN). I was privileged to attend last year's retreat in Chicago. That experience was transformative.
During that retreat, I met an incredible man, Allan Shedlin. He was so kind, so caring, so committed to supporting fathers like me. Through that exposure, I was able to mobilize special fathers in Uganda and form our own SFN cohort. We have been blessed.
These men have become my brothers. They understand the weight I carry and they don't judge me when I'm tired or scared or overwhelmed. They just show up, and that has made all the difference.
Where We are Now
Today, the Angels Center has directly supported more than 160 children and provided counseling and community support to 150 families. We employ more than 30 specialists and caregivers working with children who live with Down syndrome, autism, cerebral palsy, and other conditions. Over the years, we've served more than 380 children with disabilities.
But the work is not easy. The cost of raising a child with a disability is high. Children have extra needs – assistive devices, medication, nutrition therapy, hygiene supplies. Parents are already overwhelmed emotionally and financially. We fundraise continuously just to stay operational. Yet I have no regrets.
Abryl is now a big boy with a lot of energy. He is progressing steadily. He smiles and laughs and demands attention, just like any other child. And when I look at him, I don't see a diagnosis, I see my son. I see the child who taught me what it really means to be a father.
A Message to Other Fathers
To any father reading this who has just received a difficult diagnosis, or is navigating a child's health crisis, or feels overwhelmed by the weight of it all: You are not alone.
There is often no one within your family, at work, at church, or within your friend group who understands or can relate to what you're going through. I know that feeling. But I also know that help is out there if you reach for it.
It's okay to be shattered. It's okay to not have all the answers. It's okay to ask for help.
Your child doesn't need you to be perfect, they need you to be present. They need you to fight for them. They need you to love them, not despite who they are, but because of who they are.
Abryl changed everything for me, and I wouldn't have it any other way.
Daddy on.
Submissions from 70 countries and counting!
Daddying Film Festival & Forum (D3F)
The Daddying Film Festival & Forum (D3F) 2027 Call for Entries keeps rolling all summer long on FilmFreeway! Students (3rd grade-undergrad), Dads, Granddads, Moms, Grandmoms, dad figures, Parenting Podcasters, Musicians, and indie filmmakers can submit films, videos, and podcast episodes through November 23, 2026!
Early-bird discount entry deadline is FRIDAY, October 2nd.
Since 2022, we've received submissions from 70 (!!) countries and we're excited to present another amazing collection of the best daddying stories submitted by students, Dads/dad figs, Moms, and indie filmmakers from around the world! Check the D3F website or our FilmFreeway page for submission details and to be inspired by Atticus Award-winning and finalist films from previous years!
SAVE THE DATES: The 6th annual, virtual Daddying Film Festival will take place on Eventive, January 11-20, 2027, and our LIVE Daddying Film Forum, at American University in Washington, DC, will screen select Atticus Award winners and finalists, January 29-30, 2027.
Alfred Niwagaba is the father of four children, co-director of Canaan Travels in Kampala, Uganda, co-director of the Little Angels Primary School - Ntungamo, and co-founder of the Angels Center for Children with Special Needs with his wife Rose.
Comments