The greatest gift I never knew I needed
In early 2018, during a routine ultrasound in Kampala, the radiologist noticed that my son's femurs were measuring very small. I instantly looked at my husband and whispered, "That's a soft marker for Down syndrome." Despite my concern, the radiologist dismissed it, assuring me that my dates were simply wrong. But as the pregnancy progressed, the long bones stubbornly remained short. We chose to fly to the US for further testing, clinging to hope that everything was normal.
On July 9th, I underwent an emergency C-section. As the doctor held up my son I immediately recognized that he had Down syndrome. Even as the medical team reassured me that he was healthy, grief consumed me.
In the weeks and months that followed, I mourned the child I thought I would have. The dreams I had for him seemed impossible now. Though I knew the truth, that this was a random occurrence beyond my control, part of me still searched for answers for something I had done to cause this. Post-partum depression, undiagnosed and unrecognized, amplified my grief and self-blame. I could not understand why me, why us. I had dedicated my life to caring for children with disabilities, to fighting for their well-being. Why must my own son face similar challenges?
Drowning in a sea of sorrow, I confided in a close friend. Her response, well-intentioned but strange to some, was just what I needed: "Have you considered adoption?" The question forced me to confront a choice I hadn't allowed myself to acknowledge. And in that moment I chose my son. I chose to be the mother my son needed, to embrace the unexpected journey that lay ahead.
When I made this choice, I discovered the greatest gift I never knew I needed.
Our society often seems to prioritize achievements and material possessions. We're taught to strive for success, to acquire more things, to climb the ladder of status and recognition. But in this pursuit, we sometimes lose sight of the true treasures that make life meaningful: the love we share with others, the connections we forge, the moments of joy and laughter that fill our hearts. These are the things that truly matter, the things that sustain us through life's ups and downs. My son's unwavering spirit and determination to constantly learn and grow and be himself reminds me of what truly matters in life. He has also brought us a new family – a global community of families who understand the unique joys and challenges of raising children with Down syndrome.
As we traveled and lived in various parts of the world, the stark contrast between the resources available to families in different countries became painfully clear. In East Africa, we witnessed families struggling to access basic support and medical care for their children with Down syndrome. The lack of awareness and understanding within the community and among healthcare providers was particularly striking. We knew we had to do something to bridge this gap.
That's why we founded the Down Syndrome Centre of East Africa (DSCEA), starting in Kampala. We provide families with educational resources, support groups, and access to specialized therapies. We conduct workshops and training programs to educate the community and healthcare professionals about Down syndrome, fostering a more inclusive and supportive environment. Our vision is to see DSCEA grow into a leading resource for Down syndrome in East Africa, empowering individuals with Down syndrome and their families to thrive and celebrate Down syndrome.
