Extraordinary mothers who persisted

They all had thriving careers when the unexpected challenges of parenting their special needs children set them on a different course, pausing some of their career goals. Yet, these remarkable mothers chose to dedicate themselves to caring for all their children and discovering a new sense of purpose in the process, writes Vanessa Obioha

Motherhood is a journey most women look forward to. The anticipation of bringing forth new life fills one with a heady, almost God-like sense of responsibility for another human being. Yet, this journey is not without its unexpected twists, some of which can be deeply challenging, even soul-crushing, testing one’s very sense of parental adequacy. Am I capable of being a good parent? Can I provide and protect my child? These questions can either shatter one’s confidence or serve as the catalyst for growth.

However, it is a different ball game when raising a child with special needs. The initial shock and confusion can give rise to self-doubt, even thoughts of despair, as one grapples with the weight of this unexpected challenge. Amidst the turmoil, some extraordinary women rise to the occasion with unwavering strength and resilience. Bukola Ayinde, Charity Ibeabuchi and Tonye Faloughi-Ekezie are among these remarkable women, each with their own vision of motherhood redirected by the needs of their children.

These women, whom I affectionately call “super moms,” transcend the traditional roles of parenting. Their journey is not merely about raising a child; it’s about ensuring their child’s survival and acceptance in a world that often struggles to understand and embrace differences. It’s about finding beauty in adversity, strength in vulnerability, and assuming a superhero mantle when others might falter. Above all, it’s about experiencing the profound, unconditional love of a mother, a love that transcends words and is best understood through the radiant smiles of their beloved children.

Today, I choose to celebrate these women, knowing that there are countless others like them silently grappling with their own challenges. By sharing their stories, I hope to inspire others to embrace their own struggles and to foster a more inclusive, compassionate world where every child, regardless of their abilities, is loved and accepted just as they are.

Bukola Ayinde: My Daughter Has Made Me a Better Person

In 2012, lawyer and author Bukola Ayinde joyously welcomed her lovely daughter Oluwalonimi. However, their journey took an unexpected turn when Oluwalonimi, born premature, faced a harrowing ordeal in the early weeks of her life. She had an apneic episode; a disorder that causes one to stop breathing briefly. This led to the loss of oxygen to her brain. Despite surviving this initial challenge, Ayinde soon noticed concerning signs when Oluwalonimi struggled to hold her head upright at four months old. While doctors initially attributed this to her premature birth, a relative’s insistence on further evaluation revealed a heartbreaking diagnosis: cerebral palsy;  a condition characterised by impaired movement, muscle tone, or posture due to abnormal brain development, often occurring before birth.

“When I got my daughter’s diagnosis, I was devastated and lost interest in pursuing a career or building a business. It also affected my self-esteem and belief in my capabilities. It was a process for me to heal and get back on my feet,” she says. The healing process was agonising. She faced societal rejection as schools closed their doors and stares in churches made her child feel like an outsider. It was in these moments of painful rejection that Ayinde realised the pervasive misinformation surrounding cerebral palsy in Nigeria.

“There was so much misinformation out there about children with disabilities, and I wanted people to see the child first before the disability.”

Ayinde travelled to Hungary to gain insights into cerebral palsy, engaging with knowledgeable doctors and experts. Upon her return, she began sharing her experiences online, connecting with a supportive community of parents facing similar challenges. Today, Ayinde leads the non-governmental organisation ‘Diary of a Special Needs Mum Initiative’, providing vital support to parents of vulnerable children. She passionately advocates for inclusive education for children with disabilities and has authored books that amplify her mission.

“Having a child with disabilities redefined my life. It gave me a purpose that I was so passionate about. My daughter has made me a better person. I have surpassed goals that I never thought I could and yearly I strive to do better. I have been given the opportunity to look at life through a different window.”  Raising Nimi has deeply inspired Ayinde in remarkable ways. One poignant example is when her daughter expressed a desire to join the dance club despite her physical challenges. Ayinde vividly recalls the moment her daughter’s caregiver informed her that Nimi had cried during school time because she longed to be part of the dance club.

“I could just imagine what went through the mind of her caregiver, not only was my daughter in a wheelchair but her hands and legs had uncoordinated movements, she also wore a neck support and she wanted to join the dance club?”

Despite the caregiver’s doubts, Ayinde encouraged her daughter’s aspiration, recognising the importance of embracing her unique abilities.

“She doesn’t have to do it like the way the other children do it. She could do it in her own special way. You could simply move her wheelchair around the room. My daughter has taught me to think outside the box. She helped to open up the creative side of me.”

Having overcome the initial fears of raising a child with a disability, Ayinde acknowledges occasional bouts of anxiety about her child’s future in her absence. But she has found a way to defeat that fear each time it crosses her mind. She therefore advises other parents to always have proactive planning while alive and ensure that those around them are equipped to care for their child, as well as establishing a trust fund to provide financial security for their child’s future. For Ayinde, the love for her child keeps her going.

“I want to enable her to live the best life that she can within her circumstances. I have come to realise that life is a gift so I have to make the best of the life that I have been given. Time is not going to wait for everything to be perfect before it continues to tick away. Daily, we get older and one day, our energy will be gone and we can no longer do the things we wish to do. It is my motto to live my best life despite challenges.”

Charity Ibeabuchi: Caring For My Boys Has Exposed Me to Purpose

“Why me God?” Charity Ibeabuchi, a mother of four — three boys and one girl, tearfully pleaded with the Supreme One in 2013, upon receiving the devastating news of her third son’s diagnosis with ataxia telangiectasia, a motor disorder akin to cerebral palsy. This heartbreaking revelation compounded the anguish of her second son’s diagnosis with the same condition in 2010.

Overwhelmed by grief, she secluded herself in a room and wept for six agonising hours as her world seemed to crumble around her.

“Why does it have to be me going through these challenges, remembering how I grew up as ‘a good girl’ and getting married as a virgin? I couldn’t understand why I had to be the one to go through this,” she said. Nothing could have prepared Ibeabuchi for the life-altering events of October 2010. After dropping her children off at school, she received an urgent call to pick up her second son due to a high fever. This abrupt change was unsettling, as their mornings were typically filled with cheerful goodbyes and hugs. Nonetheless, she instructed her driver to retrieve him while she sought permission from her employer to leave for the hospital.

Upon arriving at the hospital, the doctor recommended consulting a psychiatrist or neurologist at the general hospital.

“I questioned him and the only reason he gave me was that the fever affected his brain already and he was beginning to jerk.”

Unable to secure an immediate appointment at Lagos State University Teaching Hospital (LASUTH), Ibeabuchi and her husband sought medical help outside Nigeria. They were referred to a doctor in South Africa and swiftly applied for an emergency visa, embarking on a journey in search of answers.

In South Africa, a series of exhaustive tests were conducted, some taking nearly two months for results to emerge. Upon learning of their son’s condition, Ibeabuchi and her husband embarked on a steep learning curve, researching coping mechanisms and strategies to navigate their new reality.

Just as they were beginning to adjust to this new lifestyle, tragedy struck again when their third son, six years old at the time, was also diagnosed with the same condition.“It’s been a journey of faith since then, engaging with several therapists ranging from physiotherapists to occupational therapists to speech therapists and of course, special educators. It’s been a journey of hope too.” Ibeabuchi’s two sons are today 18 and 16 years old respectively and are in secondary schools. Caring for her boys has revealed a profound purpose for Ibeabuchi.

“I actually had studied special education as a course at the Federal Polytechnic Kaduna because I wasn’t given the course of my choice as a young girl but instead of sitting at home, I was advised by my dad to take the course. I did not know I was being prepared for a task ahead.” Driven by this purpose, Ibeabuchi founded an inclusive school in Lagos in 2017. Today, the school, Inspired Christian Inclusive School, boasts over 250 students, including more than 50 learners with various special needs.

“I am not just happy that I have been able to help my two sons live meaningfully, I have also helped so many families overcome their fears and anxieties over their children with disabilities too.” Ibeabuchi finds gratitude in her children’s unexpected resilience despite the grim prognosis of ataxia telangiectasia. Her greatest strength stems from seeing her boys and other special needs children thrive in school.

Tonye Faloughi-Ekezie: It’s a Badge of Honour to be Her Mother

Tonye Faloughi-Ekezie’s second pregnancy proceeded smoothly, without any apparent issues. So confident was she in the health of her unborn child that she opted out of the anomaly test, firmly believing she would still be a mother regardless of any health concerns. In America, where Faloughi-Ekezie gave birth to her second child, Simone, there were no signs of alarm. Even after travelling to the U.K., everything seemed fine. However, at three months old, upon returning to Nigeria, Simone experienced a choking incident. Faloughi-Ekezie, equipped with knowledge of baby first aid, promptly attended to her child at home before seeking medical assistance. Although initially declared healthy, a paediatrician later suggested testing for Down Syndrome.

“I was surprised because Simone as a baby didn’t even look like she had Down Syndrome. She had none of the external markers that you checked for.”

Simone was confirmed to have Down Syndrome, but that wasn’t the biggest shock. “The next thing that we immediately had to do was get an echocardiogram because about 40% to 60% of babies born with Down Syndrome have congenital heart defects. So they needed to immediately check the status of her heart. And that’s when our lives really changed because at four and a half months,  she was diagnosed with Down Syndrome and just a week or two later, she was diagnosed with heart failure.” Faloughi-Ekezie received the devastating news that her daughter had only six months to live due to severe complications from her heart. Determined to save Simone, she travelled overseas when Simone was just five months old for specialised treatment. In America, doctors insisted on Simone’s full recovery before undergoing heart surgery, a process that took over a month. It wasn’t until over three years after the surgery that Simone’s heart began to function properly.

And just like that, Faloughi-Ekezie’s world turned upside down. Her career aspirations as a prominent film/TV producer were put on hold to care for her children. In those early days, fear consumed her, and she grappled with thoughts of death, willing herself not to exist if it meant her daughter could live.

Society’s lack of acceptance only added to her anguish. She recounted an incident in church when someone refused to sit with her daughter due to her appearance. Additionally, there were challenges with representation, as her son once quarrelled with her for not allowing him to play with her daughter’s therapists, mistaking them for playmates.

While facing  the challenge of explaining Down Syndrome to Simone’s older brother, she realised the lack of representation of black children with the condition. In response, she took a creative approach and authored the book series ‘Ugo and Sim Sim’ to fill this gap and educate others about Down Syndrome.

“And it’s the first to globally feature a black character with Down Syndrome.” She has become a passionate advocate for children with special needs. She hosts the podcast ‘Special Moms Africa’ and founded the Simone Oasis Foundation, which utilises creative arts as a platform to advocate for children with special needs.

“I’ve never been ashamed of my girl. I see it as a privilege, a badge of honour to be her mother.”

Simone is now eight-years-old, radiating vitality and ambition. She is an artist whose painting can be found in the Children Art Gallery. Through observing and raising Simone, Faloughi-Ekezie has gained a profound appreciation for life’s smallest joys.

However, she acknowledged that parenting a child with special needs is a lifelong journey fraught with emotional highs and lows. She calls it an ‘oxymoron of life.’

“There’s a lot of grief and there’s a lot of joy. But there’s recurring grief. And I realised it’s going to be lifelong. At first, I thought it was anger and frustration. But you know when you are pregnant, you think about this child you are going to have and imagine what life is like with the child and you never imagined you’re going to have a child with special needs.“Sometimes, you can just be doing the most ordinary thing and then you think about the child that you thought you were having. You love the child that you have but you think of the child that you thought you were having especially when other children are around and they are able to do things that your child cannot do, it can be really heartbreaking. So you are learning to cope with continuous grief and loss. But at the same time, it’s so nuanced that in the very next moment, you’re experiencing total and utter pure joy.”

ThisDay