Refusing to live in pain

Having been out of here for a pretty long while, it seems easier to remain out. Somehow I did not want to talk about the pains Ziim seems to be living in. Now you lie Nonye, you did not want to talk about the pains you go through each time she is in pain which is  often. Well, yes, and the helplessness I feel about the fact that not much could be done to immediately “fix” her.  Did you hear the sigh? Yes I sighed. This is one fact about CP; there is no quick fix if there is a fix, for most issues that result from the condition.                                                                                                                                                                                                                                                   Since I expressed my desire to give up my independence, I have not been in here. Not that much has not been going on, but like I said, I just did not want to talk about what seems like a cloudy sky, why do that when there is enough sunshine to talk about.

Since then we have seen three orthopedic surgeons, the first one lacked bedside manners. With a  wave of hand, told me that they usually do not waste their time on children such as Ziim.  He dismissed us in less than eight minutes. The next one explained what he would do. How he will cut her up and try to create that which does not exist. He said to come when we are ready. Not much was said to my question about post surgery management and rehabilitation. Hm… Wonder if I will ever be ready. Doctor B was more empathetic, he said to me, after examining Ziim; “when we were in school, we were first taught how to operate, then we were taught when to operate and then, when not to operate, madam, this is an example of one of those times when we were taught not to operate. The gains do not justify the risks involved”. Hm.. .. He placed us on baclofane syrup. I’ve asked if it solves the problem, not exactly, will help the muscles to relax and reduce the pains. Hm… the pains!! Moving Ziim is an issue now, pain! Anyway, the doctor told me that pain does not kill, yes he said so and being an authourity, I did not argue with him. So we live in pain believing that it will not kill us.

It could be distressing being in a situation such as this. I keep wondering what they have been doing with children that had this kind of issue. Ziim cannot be the first child with CP in Lagos to have hip dislocation. I understand that a good percentage of children with spastic quadriplegia CP do develop this problem, particularly those who do not walk before age three or so (actually most of them hardly walk before that age). So what have they (you know who) been doing with them? In my quest to find out how parents handle this problem, I spoke to some parents with older children with CP.  Mrs. O’s angel (that’s what she calls him) is 21 years, she told me that she did nothing, he does not even feel the pain any more, she said. Hm… Mrs G’s son turned 17  this year. She was told about the hips when Ife was about seven years or there about. She was also  told that surgery was not an attractive option, probably for the same reason of the gains not justifying the risks (like Ziim, Ife has seizures too). I asked; so what did you people do? Nothing my sister, ha.. he has gotten used to the pain, you know, there is really little or nothing one can do.Really??? There has to be something, no matter how little. It will be a mistake not to do anything because only little can be done.

This mama is not going to sit and watch her daughter get used to pain. She is not going to allow her live in pains without doing anything. There are various options, just that in this our clime, it appears as if they are limited. We need to find a way to make the pains go away, they are affecting our quality of life!!!Ziim hardly (and that means her mum too) sleeps through the night.

So I am out to make the pains go, knock them out, they must go!  We refuse to live in pain! How?? Of course you’ll read it here.

pain

 image from here

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4 thoughts on “Refusing to live in pain

  1. Chika Nwosuh

    I do feel what both of you are feeling. It is only God that can sooth the pains. God can provide you the way to knock off the pain and we pray He does. We wish you more wisdom and strength to carry on this. Both of you are always in our prayers and other kids with similar conditions. Cheer up my dear.

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  2. […] and started ABR therapy in December last year. So far, let me just say that I am happy. All those pains I talked about are no longer there. Mothers of children at the center who knew how she was last […]

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  3. […] No cringing from me or crying out in pain by Ziim. Now Aunty D was with us when we were practically living in pain, so you can understand her amazement. All that pain is gone? She asked in amazement. Yes, well […]

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