The long torturous journey begins; the trips to the doctors started. I have been reading everything I could lay my hands on child development and disabilities. I am not a scientist but my secondary school biology has kicked in full throttle. I remember all I learnt about genetics, chromosomes, DNA and all that. I wanted to figure out desperately what was wrong with my dear son and what I could do to arrest it there and now. There were certainly developmental delays. He was not sitting at five months, was hardly making eye contacts.
I read about down’s, syndrome, autism, Kawasaki syndrome, cerebral palsy, multiple sclerosis, kabuki syndrome…. everything in the books, my child’s condition wasn’t quite all these. I took his length, weight and head circumference on a daily basis, they were all seemingly okay, but my baby wasn’t. The doctors too were exacerbated. They reckoned I should wait till he was about 18 months before they will be able to figure out precisely what was wrong with him. Hubby had resigned to Allah (SWT) at this point. He is an incurable optimist. He believes that one day he’ll get over it before we all knew it, but mothers knows best.
I know my child is not normal. I have helped in taking care of babies in the past and I know this is not normal development. This doesn’t just go away. This is something we have to manage for the rest of our lives probably. Disability means twenty-four hours of care and intervention. My husband remained the calming voice. He puts the damper on my several daily issues. Our lives were changing and we knew we would only be able to manage well with great team effort. Sometimes I find myself worrying that one day hubby will abandon me and run off to have healthy children with some other woman, but he is a practicing Muslim and I certainly trust him. Rasheed’s condition is unpredictable. He might have a faulty immune system. It is going to take months to diagnose as doctors remain unsure.
Parenthood is tough anyway, you are always on call and sleep-deprived and then managing a special child is almost hell. I know Allah will make things easy for me. Our friends and families are all helpful, but I hate the pitiful look they have anytime they come around. I have always been the happy, lucky, go-getter and now everyone is offering different prayers and looking at me with a world of pity. Oh Allah help me, I do not need this. At other times we feel isolated, we expect people around us to brighten our lives and not see the flaw in our baby, but no. The most compassion has come from family friends with children of similar fate. I instantly bonded with my husband’s distant relation whose first daughter has polio. She understood our plight and offered advice and support constantly. The “why me?” has started wearing off and am getting back to reality.
Today I am trying to draw out the family’s gene pool and understand my son’s genetic predisposition and inheritance pattern to this unnamed ailment. My lovely son has a rare disorder and I am determined to get to the bottom of it, understand how to manage it effectively and possibly find a cure. There has to be a cause. Something went wrong somewhere. I am going to understand and support my son any which way. He needs round the clock care and I will do everything in my power to offer that to him. It is important for my child to be as normal as possible; I will hate people to gawp at him like some circus freak. I will not keep him indoors or locked away in some room or institution. He should be as integrated as possible. Life is a struggle as it is and I’d hate people to knock us down further. That would destroy my soul, I don’t need anyone’s pity, we are a happy family and we just want to get on with our lives. I keep wondering who else has this condition in Nigeria.
How many children are with this kind of problem? What is the government doing to help? Which charities can help? I need a support system, like a group, people that understand what am going through and willing to help. All in all, my AbdulRasheed has taught me to take things for granted and focus on the big picture. Life is certainly a journey and how to get through it is a very personal path.
I am learning to laugh again, we need to find humour in every difficult situation, or one might lose it all together. May Allah (SWT) give respite and comfort to all parents and families going through various forms of health challenges.