In the 60s, while expectant, my mother contracted German Measles. It has no symptoms. By the time she was giving birth to her first born son, there were complications. Mental retardation, and deafblindness started to set in. She tried everything, no door was unknocked, multiple surgeries, consultations.
She talked to every doctor in the country. All of them, including, the professors, told her they had travelled far and wide and had NEVER seen anyone like my brother. That he would not live beyond his 5th birthday. Or his 10th. Nor his 12th. Albert Okwara is still here! 50 years later! What a journey it has been. Friends have fallen along the way, those that could make the choice did so and exited our lives. Called it a curse. To the entire community! I won’t name names but he knows himself!
The world of disability is a lonely one! The road has been lined with tears, pain, dashed hopes. But it has also had wonderful lessons that have made me who I am today! Let me explain, Albert is deafblind. He does not see, speak or hear. His perception of the world has been through his primary caregiver, his mother. My mother! We have cared for him, fed him, clothed him and bathed him for close to 5 decades now.
Today the round-the-clock care continues. Many times I have asked myself how different life would be if he had just one of the senses. What would he say to me? About my work? Life choices? Wish he could have been the big brother to shield me from the bullies. Stand behind him when those people in my neighbourhood where I grew up said nasty things (you know who you are).
Wished he could have walked me down the aisle. Instead, it was the other way around. I had to grow up fast. Be the ‘big sister’. I bathed him, clothed him and fed him and protected him from the world that has such high levels of ‘perfection’ that it shuns anyone who seems ‘less than perfect’. Sometimes I mourn my lost childhood but it was for a good cause. For a man who is a pure. For that is what Albert is. He has seen no evil, heard no evil and uttered no evil. Literally! His soul is pure. No ill will. No malice.
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