It all began on a faithful Friday, the 10th of July, 2009, when I was expecting to give birth to a bouncing baby boy, my beloved son, Abdur Rahman.
His birth was through a Caesarean section, and I looked forward to welcoming my precious child into the world with joy and excitement.
However, the moment my baby was brought to me, I noticed a swelling on his back. I was confused and did not fully understand what I was seeing. I remember the moment the doctor and nurses showed him to me, and that moment remains part of my story as a mother.
After I had recovered from childbirth, I was informed that my son had a condition called Spina Bifida. I was also told about some of the challenges he might face, including difficulties with walking and controlling his bowel and bladder.
As a mother, hearing this news was not easy. I had so many questions and concerns about my child’s future. Nevertheless, I accepted him because I knew that he was my child, and I loved him.
Abdur Rahman underwent surgery, and I hoped that everything would become normal after the operation. I believed that he would begin to improve and that things would gradually become easier.
Unfortunately, as time went on, I did not see the improvement I had hoped for. He was not moving his legs, and I began to understand that our journey would require more patience, strength, and commitment than I had imagined.
The journey through different clinics
Our hospital visits became part of our everyday lives. I had to carry him to the physiotherapy clinic for exercises, the orthopaedic clinic, the neurosurgery clinic, the continence clinic, and the plastic surgery clinic.
It was a long and demanding journey. Moving from one clinic to another required time, energy, money, and emotional strength. There were days when I felt exhausted, worried, and overwhelmed by the responsibilities of caring for him. Nevertheless, I continued because I wanted to give my son the best care possible.
I wanted to understand his condition better, so I began reading about spina bifida online. The more I learned, the more I realised that it was a lifelong condition that would require ongoing care, understanding, and support.
Discovering a powerful support system
Amid my online research, I came across Festus Fajemilo Foundation through a friend and this became an important turning point in our journey.
Through the foundation’s group support meetings, we received more information and enlightenment about Spina Bifida and the challenges associated with the condition. These meetings helped us understand the condition better and taught us ways to care for our children.
One of the greatest sources of comfort was the realisation that I was not alone in this journey. Meeting other parents and caregivers who were facing similar challenges gave me a sense of belonging. We shared our experiences, learned from one another, encouraged one another, and found comfort in knowing that other families understood what we were going through.
Festus Fajemilo Foundation has been of tremendous help to us. The foundation does not only educate and enlighten families; it also provides support and empowerment. Its efforts have brought succour, encouragement, and renewed strength to families like mine.
I am grateful for the opportunity to learn, share experiences, and receive support through this community. It has reminded me that although the journey may be difficult, we do not have to walk it alone.
Another journey discovering his hearing impairment
When Abdur Rahman was about six months old, we noticed that he was not responding to sounds. This discovery opened another chapter in our journey as a family.
We began visiting the ear, nose, and throat (ENT) clinic and an audiological centre to understand what was happening. After the necessary visits and assessments, we obtained hearing aids for him, hoping that they would help him hear.
Unfortunately, the hearing aids did not work as we had hoped. We had to come to terms with the fact that Abdur Rahman was also living with a hearing impairment.
This was another difficult experience for us. We had already been learning to manage the challenges associated with Spina Bifida, and now we had to learn how to support a child who also had a hearing impairment. However, we did not give up.
Learning sign language as a family
We realised that we needed to find a way to communicate effectively with Abdur Rahman so that he would not be left out of family conversations and activities.
As a result, the entire family embarked on another journey: learning sign language. I, his father and his siblings all had to learn sign language so that we could communicate with him, understand his needs, and ensure that he felt included and loved.
It was another learning experience for all of us, but we knew it was necessary. We wanted Abdur Rahman to participate in family life, express himself, and enjoy the same sense of belonging as everyone else.
Our decision to learn sign language taught us that loving a child also means making the necessary adjustments to understand and communicate with that child.
Learning acceptance and finding strength
The journey was not always easy. There were moments when I struggled emotionally and sometimes reacted out of frustration when things became difficult. But with time, learning, reflection, and faith in God, I began to understand my son and his needs better.
Today, I can proudly say that I have accepted Abdur Rahman and his condition. I see him not as a limitation, but as a precious gift entrusted to me by God.
Abdur Rahman is doing well in his own way. He is an intelligent, observant, and helpful boy. He may face challenges in certain areas, but he has strengths that make me proud of him every day.
His intelligence, awareness, and ability to observe his surroundings continually remind me that every child has unique abilities and deserves the opportunity to grow, learn, and thrive.
My experience has taught me that raising a child with Spina Bifida and a hearing impairment requires more than love alone. It requires knowledge, patience, acceptance, courage, and a willingness to keep learning.
Message to parents and caregivers
To every parent or caregiver raising a child with Spina Bifida, Hydrocephalus, or any other disability, I want you to know that you are not alone, and your child deserves to be loved, accepted, and respected.
We did not create these children ourselves; God created them, and I believe that every life has a purpose. Therefore, when God entrusts a child with special needs to us, let us embrace that child with love and do our best to provide the care they deserve.
First, accept your child. Acceptance does not mean that you will never feel tired, worried, or overwhelmed. It means recognising your child’s worth and choosing to continue caring for them with love, even when the journey is difficult.
Second, learn about the condition. Seek reliable information, follow medical advice, attend necessary appointments, and connect with organisations and support groups that can help you. Knowledge will help you understand your child’s needs and provide better care.
Third, do not stigmatise your child. Do not hide them because of their condition or allow society’s opinions to make you feel ashamed. Give them the same love, attention, encouragement, education, and opportunities that you would give any other child.
Finally, learn to recognise and celebrate your child’s abilities. Do not focus only on what your child cannot do. Pay attention to what they can do, encourage their interests, and help them develop their potential.
A message of hope
As we commemorate World Spina Bifida and Hydrocephalus Day, I share Abdur Rahman’s story to raise awareness, encourage other parents, and promote understanding and acceptance.
To families walking this path, I pray that God grants you strength, patience, wisdom, and the resources you need to care for your children.
To society, I appeal to you: please show kindness to children living with Spina Bifida, Hydrocephalus, and other disabilities. Do not judge them, mock them, or treat them as though they are less valuable than other children. They deserve dignity, inclusion, love, and equal opportunities.
I also encourage parents and caregivers to seek out organisations such as the Festus Fajemilo Foundation, where they can gain knowledge, share experiences, receive encouragement, and find support from people who understand their journey.
And to my beloved son, Abdur Rahman: you are loved, you are valued, and I am proud to be your mother. Your journey has taught me lessons about patience, courage, acceptance, and the different ways in which a child can shine.
Spina bifida and hearing impairment are part of your story, but they do not define the whole of who you are. I am your mother, and I will continue to learn, grow, and stand by you.
The power of love, faith and support
I cannot tell my story completely without acknowledging the incredible support I have received from my brethren in faith. Their contributions to my journey cannot be overemphasised.
At moments when my spiritual strength seemed low and I felt emotionally overwhelmed, they rallied around me, lifting my spirit with words of encouragement, extending helping hands, and offering support during hospital visits.
Their love and kindness reminded me that I was not alone, even during the most challenging moments of my journey. Whenever I felt weak, their encouragement helped me regain my strength and continue caring for my son with renewed hope and determination.
I must also express my heartfelt gratitude for the acceptance and support I have received from both families, my friends, and even my colleagues at my workplace. They have stood by me and my son, showing us love and understanding throughout this journey.
Indeed, I consider myself very fortunate in this regard. Having people who accept my son, support our family, and stand by us without judgement has been a tremendous blessing. Their kindness has made some of our difficult moments easier to bear.
Looking back, I realise that although caring for a child with special needs can be challenging, the love and support of family, friends, colleagues, and our faith community can make a significant difference.
I am deeply grateful to everyone who has stood by us. Your love, prayers, encouragement, and support have been part of the strength that keeps me going. May God bless you all abundantly.