On Sunday, I received an sms from Mr Y. The message said that he was on his way to lagos from out of town to see me. He was coming with his wife and their nine year old son who has cerebral palsy. When I read the message, I was with a friend, I went into panic; what am I going to do for them? I felt so incompetent, what do I know that they should embark on such a long journey for? Wish he had called me before they set off, I would have discouraged him from coming. Well I could do nothing to stop him, they were on the way already, almost a five hour journey. I silently prayed for journey mercies for them after I had sent a message informing him the time CpCenter opens.
I did not get to see them untill about 10a.m because I had to go to Oregun to sort out an urgent issue for my niece. When I saw them, I had to fight to keep my tears from flowing. They found the CpCenter on the web. Actually it was their doctor who did, while trying to find out what is being done for Cp in Nigeria. According to him, they only found the CpCenter. The doctor had spoken to me a few times last year and each time I had told him what we are doing or is it trying to do. I wonder if it is worth the long trip. It is sad that nobody in this our dear country has found Cp important enough to try to set a center where one can access information on therapies.
My meeting with them lasted about three hours as they had to go back. I do not know if I did anything, probably I only spoke some words of encouragement, but the concern here is not what I did or did not do. My concern is what they did. I watched how they tend to the boy inspite of his disability. I used to say that Ziim is highly involved untill I saw the boy! But the love they have for the boy sips through their actions and words. Looking at the boy, I could imagine the pressure they would be going through from unsolicited advisors; Hm..
wont you take this boy to somewhere where they will better care for him? wont you throw this boy away? Some would even tell you out right to let help him die. You are amazed, don not be, we hear that all the time couched in different ways, but said all the same.
Tuesday I was in LUTH, no, not with Ziim, I was running around for this event. I met P whose 14 months old son, B has hydrocephalus with lots of other medical issues. Early february they found out that the shunt was malfunctioning. She decided to take him to India so that she would address other issues like the eye surgery. She had called me the previous day(Monday), they came back on Sunday. She said the story was not a pleasant one. She said she would be in LUTH Tuesday, since I had a meeting at LUTH, we agreed to meet there and talk. We met, we talked, more like me listening to her.In the course of the talk, she told me how a doctor, that morning asked her why she did not allow B to die, you read it rightly; why did she not let B die. This was from a doctor, who took an oath to preserve lives! She told me that she said to the doctor that she is aware that lots of women spend millions of naira in their effort to get pregnant (ask the fertility clinics if you are in doubt), here she is, with the one that it pleases the Almighty to give her and you are asking her to kill him!!
Later in the day, Mrs I came visiting in the center. Mrs I is a nurse, we met at our last visit to Oshodi. We found out that we are united by that cord of being mothers to children with disability. Her son Chris, (now late) had Muscular dysthrophy. He died at 15, that was three years ago, she still talks of him with a lot of love and passion. We talked about the challenges of raising a child with disability in our society, the pressure from “friends and relations” and sometimes strangers to either abandon the child or even help h/her die. She said she as nurse, she still had people tell her that. But difficult as it was, she opted to take care of her son till he died, telling me that he died in her arms.
People do not realize that a mother with a child with disability loves the child just like any other child. Sometimes, it appears as if the child is loved more than other children. It is unkind to advice a mother to abandon a child under the guise of institutionalization. Saying that it is evil to point her to the direction of killing the child with disability is putting it mildly. I will not tell you that being a mother to a child with disability is like eating a cone of ice cream, no it is not, but believe me, there is this inner joy and strenght you get from an unknown place. Well, I guess it has to be from above. I read this somewhere and found it most apt “children with disabilities are like butterflies with a broken wing. They are just as beautiful as all others, but they need help to spread their wings” Of course the help needed by each is different depending on how much the wing is broken. One sure thing I know is that each mother has been equiped with the strenght to help her butterfly fly.
What kind of assistance are you giving to a mother whose butterfly has a broken wing? Helping her mend the wing or………..