5.00 am is Ziim’s wake up time on Sundays, but today, that’s about the time she went back to sleep. She has been awake since 2.30 am, well at least, that’s when mummy woke up and saw that she was awake. From the wetness of her pillow, she must have been awake for a while. All efforts to rock her back to sleep failed. Of course she could not tell me what was bothering her, though I must have asked a hundred times. This lack of words!!! Using my “mother thermometers” I checked out her body temperature, it appeared ok. (you know mother thermometers; back of mum’s hand, mum’s chin, sometimes mum’s forehead on baby’s..hmm). She does not appear to be in any discomfort, she just laid on the bed, eyes shinning like cat’s, like aunty D would say.
At 4.45, we both were still awake. Ziim, you know mass is 6. 00 am, but I doubt if we’ll attend that, however, I’ll go downstairs and clean the car, if I come up and you are still awake, then we take a bath and go for that mass. I was back up at 5.05 a,m, half expecting her to still be awake, but she was not, she was asleep. Ok, no 6. 00 am mass, I do not actually know which one we shall attend for that will depend on when she wakes up. No, I won’t wake her, I will just let her sleep. We’ll probably attend the last mass.
I have time in my hands! It’s like having some extra time in a test class. I did a bit of room tidying and here I am, sitting and staring at my laptop screen, all the events of the passing week playing through my mind and urging my fingers to please talk about them. Hm.. this passing week, I came up with a plea that CP, actually all forms of disabilities should be kept far away from families in very low socioeconomic group!!
The week wasn’t so much different from other weeks, well each day/week is different. Ziim started the week with a grand mal seizure, the first in over eight months. unfortunately I was not prepared, though I have been anticipating it. For over two weeks I have been asking aunty A, a pharmacist to get us rectal diazepam but she did not find any. The ones I have had expired, unused. So when she went into seizure, I did not have any, but fortunately it resolved fast, about half an hour later when I knew she was fully conscious, but was not sleeping, I gave her oral diazepam to relax her and she slept. Aunty A had brought that when she couldn’t find the rectal. Tuesday, I noticed that she was running temperature, we treated for malaria, by Friday I could say she was as fine as she could be, she was happy, she was playing. We are seeing the pediatrician on tomorrow. Honestly this is not what I should be talking about. I should be talking about why the petition I am going to mass with today is that children with disabilities be kept away far from low-income families. I should talk about my vist to T, a child in the Center.
The Center closes early on Fridays. This Friday, I decided to pay the family of Mr. & Mrs “Ezia” a visit. Their son, T comes to the center, but we have not seen him for over one week. There was no phone call from them. T is seven, he has progressed so much since he started coming to the center. But he often goes on “holidays”, sometimes short, other times long, such that when he resumes, he is very slow at doing things that he has achieved doing. He would just like to sprawl on the floor, would not even want to sit on the chair or crawl which he loves doing. He used to like to stand particularly when he is promised a bottle of Bobo drink as reward, but whenever he comes back from those long holidays, even a promise of a carton Bobo drinks does not entice him enough to stand. I suspected that probably he is not put through those tasks at home even though I ususally implore parents to continue whatever we do at the Center at home.
So Friday when the Center closed at 2. p.m, I decided to visit his home and have a talk with his mother in their home environment and probably see how the home could be modified to suit T’s condition. I did not call to say that I was coming. We first went shopping for fruits and some food items. It was about 5 pm when we finally got there. Leaving Ziim in the car, I walked to the address that is T’s form. As I got closer, I saw T’s mother sitting in front of the “house”, she saw me and started walking towards me, then we walked together to the house. Where is T? I asked. In the “room”. We went in. What I saw is beyond description!!! In a split second I understood everything without her or T’s sister who had ran in before us to try and make T a little bit presentable uttering a word.
The poverty!!! The “house”, then the “room”!!!! The sorrounding!!! The whole scene before me!!! Oh my God!!! Not that anyone should, but families like this should not have a child with CP admist this squalor called home!!! The “house” because this building called house should be dimolished. As we got inside the room, I understood why T’s mother and the other children were all sitting outside, there was no electricity, so sitting outside is the only way they could get fresh air and some light too. But poor T, he was left inside by himself, sprawled on what could hardly pass for a bed. There is no space even for a chair much less a CP chair. I could not ask, but I remember the Center had given T a CP chair, now I fully understand why all he likes to do is sprawl on the floor!
We both walked to the car in silence!! I gave her what we had brought for them, some food item and diapers. But those are not what in my mind they need, but that’s what I could offer. Since Friday, my thought have refused to leave T and his family. They need to be relocated for the sake of that child T.
And I could not and I still can not help but to wondering; could T have been progressing better than he does if the economic situation of his family were to be better? And I cannot not help praying that disabilities should be kept away from such families as managing children with disabilities, particularly CP is expensive.
This is my prayer today and please join me. But most importantly, what are we going to do with T and his family? Hm….