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Wani: Blind Love
By Gracie Benedith
I’ve seen throughout my life, not only African-American and Hispanic parents having children with special needs and hiding them from the world and even their own family due to their shame, ignorance and/or their lack of wanting to discuss why their children are, look and act the way that they do, but I’ve also seen it in the Garifuna community and as a parent with a child, who is legally blind, I want to--no, I need to speak out!
 

“My reason for sharing my story is to inspire mothers who have special children NOT children with “disabilities” because in my eyes, there is no such thing.”

 

I remember the moment my doctor told me I was pregnant. Just like most first time mothers, I felt a little scared, emotional and overjoyed with receiving the gift of being a mother! Having to be responsible for another human being is a huge task, choosing to have a baby carries immense responsibilities. It’s not just about loving, feeding and clothing a baby, it’s a lifetime commitment to raise, discipline, do and be all that you can for the child. I was ready for the job! I remember my growing belly, the movements of my baby inside me. I remember the heartburn, the swollen feet and I also remember and will never forget… the labor! It was very overwhelming but just like any mother, all I wanted was a healthy baby, with ten fingers and ten toes.

 

 

All I wanted was to see and hold my baby for the first time. My baby Wani (which means “ours” in Garifuna) was finally born after a very long 41 ½ weeks! My baby came out the hospital with a clean bill of health and the first 2 months were so joyous, but going into his 3rd month I felt an inkling - a mother instinct that something was not right. I remember telling family members that something was unusual about my baby’s eyes. I decided to take him to see his pediatrician. The doctor said it was normal for his eyes to move involuntarily but I insisted that she take a closer look at his eyes. After a longer observation, she also became concerned. She recommended an ophthalmologist and after the examination, I was told that doctor that my baby will never have 100% of his sight.

 

I was devastated.

After that examination, I was walking down the street with my 3 month old in his carrier crying my eyes out wondering where to begin to understand what went wrong and what part I played in this situation. I was healthy, had a pretty good pregnancy, no ailments… I was confused. I went through every month of my pregnancy in my mind but found nothing that could have caused my son to be legally blind. As a first time mother, this was one of the worst things that could’ve ever happen! No one is ever prepared for this type of situation, let alone what to do to handle something like this! I didn’t know anyone with a similar situation, didn’t know who to talk to, and didn’t know where to start to seek help, it was a hard and heavy load to deal with and I felt alone.

I went to see a series of doctors and after 1 endocrinologist, 2 pediatricians, 2 neurologists and 5 ophthalmologists later; I ended up with the same result: “all we know for now is that your son’s disability is legal-blindness and with time we will know how much he can see.” I was starting to feel defeated. I listened to what they said but never really took it in so much. Something would not let me believe that what they said was what was going to be. I remember waking up one day and getting out of bed, weighed out my options, praying and letting all of my concerns go. I gave it all to God and it was the best thing I ever did for myself and especially for my son. From that point on, I made the decision to become a pro-active mother!

 

There was no more crying out in denial and sticking to everything the doctors said about my son’s so-called “disability”. I started to do extensive research and I chose a team of doctors and specialists that I felt was suitable for Wani. I got on my job in three different ways: First job: I chose 3 permanent doctors: a pediatrician, endocrinologist and an ophthalmologist and made sure that they were constantly communicating about Wani’s history and condition. To this day, I have a solid relationship with all of them and we work together for Wani’s benefit. Second job: I did extensive research to find the right therapists for him. I asked a lot of questions and demanded answers then set up a team of therapists to come to my home to work with Wani on a weekly basis. Third and last job: I knew I would need to go another step ahead so I also took the time to learn Braille.

 

I take pride in saying that since surrendering all of my concerns to God and became active in my son’s health and capabilities, things have changed dramatically! Most of the doctor’s told me that he would have learning disabilities and that he may have little or no vision at all. It has been almost 2 years since I got that news. It was a journey but Wani sees objects, picks them up and walks over to give them to me, his mama, on command!! He’s known his alphabets in English and Spanish as well as his numbers from 1-15 since he was 16 months! He has an extensive vocabulary in both languages! I see that he is insightful, eager to learn and most importantly, he is a very happy boy. He brings me so much joy and I can’t be more proud of us! We are a team and getting better everyday! The following plan is to teach him Garifuna as his third language because the Garifuna language is his to have; he loves punta music and dances to it all the time!

Being a parent is a lot of work and sacrifice. You automatically become last in your own world and your life starts to revolve around your child. It’s up to us to prepare our kids for the good, bad and worse especially to a child with special needs. I have never seen progress through parents who sit around being ashamed and wondering about what people will say about their children!! I decided that my son has the ability. I chose to have a relationship with him to understand his capabilities. We are the ones who know them the most. We must preserve their strength and work on perfecting their weakness. We must love, appreciate, encourage and instill so much pride in them that when they go out into the real world, it will take a lot of work to break them down. That is our duty! Doctors may have their knowledge and opinions on our children but understand that they (the doctors) practice medicine. Medicine is not an exact science. There is nothing like a Mother and God who’s the #1 doctor and healer.

I hope this story has moved you to see beyond yourself to see your child who needs your pride, your love and most of all your support. Like it is said “It takes a village to raise a child.” Support and guidance are available. Without this, is going to be harder for your child to make it in this world we live in, let alone… survive.

To apply for Early Intervention, for help, assistance and guidance for children with special needs, please contact: Department of Health, Bureau of Early Intervention at (518) 473-7016. 

I dedicate this to: God, my mother Grace, Kesler Miguel, my siblings, Tamiko and all of Wani’s therapists: Margaret, John, Savitre and Audrey. God bless you always and I cannot thank you enough for being such an asset to me and Wani’s life, I could not have done any of this without you!

{Editor's Note: This article was first published in May 2009 in Garifuna Movement magazine}

 

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