I  have Carer Fatigue.

I’m sure there is a more official sounding name for it, but that’s what I call it. There comes a time when  as a carer of a child with special needs, you’ re just overwhelmed by the amount of thinking, strategising, campaigning, researching and just plain hard work you have to do for the child to have as good a life as you can give them. And what’s more, you’re tired of feeling that overwhelmed.

Sometimes it is the fear that I have hit a plateau of ideas; I’ve done everything I can think of, everything that will not hurt my Paps. Lately I have decided that as long as the thing does not harm him, I will try it, even if it doesn’t help. But I do feel like we’ve plateaued now. I don’t see what more I can do, I don’t see much improvement from what we’re already doing. Sometimes I even feel like he’s retrogressed, he is not always able to do things that he could do a few months ago, whether it’s because he has forgotten how to do them, or he’s grown bigger and so is having to deal with controlling the muscles in a bigger frame than before or if, like me, he’s just plain tired of the pain and the prodding. I don’t know.

But I’m tired.

Even though I have written about the healing process, and how slowly I’m feeling better and stronger and more positive about my circumstances, there are days when the sorrow just creeps over me, the questions flood my mind, and the fears and worries chill me to my very bone. I wonder what lies ahead of me, how I will cope as he gets bigger, and we need new equipment(which is ridiculously expensive), new help, new ideas. What happens if I cant get those things he needs? At the moment I am barely able to carry him, so what will I do when he is older and bigger? Will he even survive that long? With all the challenges of daily life he goes through? Recently one of the CP mothers I found online lost her son. It hit me more than I can say. It affected me so deeply, I wept for the mother,I wept for the dreams she had had broken by the discovery that her child would have lifelong challenges, and for the time she had spent rebuilding her life around her new reality, for the new dreams she was beginning to dream for her son, the new hopes she had begun to weave, only to have these taken away so finally and so cruelly. I wept for the little boy who finally was free to fly, free from the pain of having CP. Selfishly, I wept also for myself. For I know what the doctors have said about Papi’s chances. I know the faith that I have put in God to make a joke of the doctors’ worst predictions and dire prognosis. Yet here was someone’s reality staring me in my face, bringing back the pain, the doubts, the frustrations of this situation.

Questions about our future make me weep. Yet how do I stop myself from thinking about the future? How many mothers think of the future of their toddlers and break into tears?

It’s a very lonely feeling; made lonelier still when you see your friends and family with their toddlers and kids who are about your kid’s age, so capable, so strong. Last weekend I watched my 2.5 year old niece as she walked about her grandma’s house, merrily chirping “little donkey, little donkey” (a Christmas carol we loved as kids). As much as I love my little princess, I had to blink my tears away, as I thought of the carols Ive sung over the last three Christmases since Paapa was born. I still can’t get even a flicker of response to any of those tunes, it’s as if he had never heard them before. Yet I start singing them, sometimes as early as August, so that hopefully by December I might get some reaction, however slight it may be. Yet still, there is nothing.

Thoughts like these make a person desperate, and weepy, and weak. It weakens my resolve to keep searching, keep moving till my son has some form of independent life. It makes me ask “what’s the point?” But worse, it makes me feel guilty. Guilty that sometimes I am tempted to give up ,guilty, because I am constantly trying to balance my emotions and my feelings, so that none may think I am resentful of them, or that I do not love my nephews and nieces as I should. Guilty, because I still feel like I am lacking, and lacking in a most fundamental way. Guilty, because the fear leads to doubt, and the doubt weakens my faith.

And I am truly tired of all these feelings warring within me. But if I don’t hold on, who will?

MAAME YAA BARNES

07/11/2016

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