A mother chronicles the challenges of caring for a differently- abled child

KELLY Ann Jeremiah’s story began deep within the Canje River of Berbice, where she was raised, surrounded by nature and all the old-fashioned necessities of life. Her first major adjustment was moving away from home. Although she cited the change as one of the first real shifts in her life, Kelly has long been a pioneer in adapting to change. This took on an entirely new meaning with the birth of her first child.

Still in the honeymoon phase of her relationship with her then-boyfriend, an 18-year-old Kelly discovered she was pregnant. Nothing could have prepared her for the trials of motherhood, especially given the unique circumstances surrounding her pregnancy and her differently-abled daughter, Akeela. Today, Akeela is 14 years old, and both mother and daughter are learning to cope, or as Kelly puts it, ‘rolling with the punches’. She says that amid all the challenges, being a mother to any child just takes a little extra grace.

Kelly’s upbringing was reminiscent of the authentic Guyanese parenting style, one that many people could relate to. Coming from the charming county of Berbice, she grew up among family with humble beginnings. Kelly says that her upbringing impacted her life in many ways. As she shared, “It was peaceful growing up in Berbice. We were not exposed. We grew up very respectful, disciplined, listening to our elders and neighbours. It was different.” Change is something that Kelly experienced very early on. She moved to the capital city of Georgetown when she was just seventeen years old, leaving behind a life where running along back dams and climbing trees were considered fast-paced for a place that fully encapsulates hustle, bustle, and distractions. “I moved to town with my aunty when I was 16 or 17. I used to attend NATI in New Amsterdam, and I finished a year and a half there before my aunt decided we were moving to town for a different living and a new start,” she recalled. Amidst these changes, Kelly did achieve a new life, but her toughest battle was yet to be fought.

Kelly never intended to settle in the community of Belle West, but a series of events led her there. She met her now-husband while living in Georgetown. The young couple met when they attended a mutual friend’s wedding. Kelly remembers their meeting as love at first sight, as she shared, “He actually sang for me the first night we met.” She added, “I met him in 2009. I got pregnant in 2010 with my first child. I was not living with him yet until I found out I was pregnant. I ended up coming over the river and never going back home.” It is not a decision she regrets, however. Kelly has made Belle West her home.

In 2010, 18-year-old Kelly could not have been happier to find out she was pregnant. The young mother was over the moon with the news and held a bold, hopeful idea of motherhood. However, her pregnancy was a rocky one.
Pregnancy and a life-changing diagnosis

Although she received the full support of both her husband and her family, there were some aspects of first-time motherhood that she grappled with. “I didn’t know anything about pregnancy. I used to vomit a lot; I was sick a lot,” she added, “I went through my pregnancy being sick. It affected my daughter, who is my first child.” As much as she struggled with finding her footing in motherhood, Kelly soon found out her daughter was born with cerebral palsy.

Her daughter, Akeela, was not diagnosed at birth but rather a few weeks later when her mother noticed her development was slower than that of children her age. As Kelly shared, “I was just glad that I got my daughter and she was born looking normal and everything.” She further added that when Akeela was six or seven months old, she discovered she had cerebral palsy. For Kelly, one of the hardest aspects of being a mother to a differently-abled child was accepting her daughter’s diagnosis. She worked through it and has come to grips with her daughter’s uniqueness. She admits it was not easy, but it is a feat she encourages other mothers to confront. As she shares, “I learned to accept it. Dealing with my child every day, I learned to accept her condition. I tried to find, in dealing with her, ways to understand her. I improvised ways of communicating with her.”

Both Kelly and her mother have made significant strides. Kelly has adapted entirely new ways of communicating with Akeela. She has worked towards creating a bond and relationship with her daughter. Today, at 14, Akeela can do more than she ever has, as Kelly stated, “I never heard ‘mama’ until my daughter was nine years old. Then I actually heard her say ‘mama’ to me.”

Kelly is like so many mothers across Guyana and the rest of the world. As Akeela approaches 15, Kelly is happy with the development they both have undergone. She urges all parents of differently-abled children to find the individuality in their child, sharing that “For parents of children who are differently-abled, find time to bond with them. To discover the difference in them. Because even though they are different from other children, they are still able in their own way.” Today, Kelly is a mother of four children, with Akeela being the eldest.