I read recently a comment from someone who feels that CI blogs put out by parents don’t come across as believable because we tend to only post the positive aspects of what we are experiencing.
This is largely true.
I have chosen not to post about the times I worry we aren’t doing enough. The times I feel inadequate because we are not fully immersed in AVT, as many families are.
On the opposite end of the spectrum, I also feel inadequate because we have opted to hold off on ASL for now to focus on oral language.
I still get bogged down worrying about the “what is to come” in this journey.
I still question every decision at times.
I feel isolated every time a friend with a child of similar age talks about a communication milestone, or even something as simple as the ability to use Time Outs. Because Toes doesn’t have enough receptive language to begin to understand the concept of Time Outs.
I don’t share when I feel the frustration of trying to explain to people that, while this CI is a miracle and a blessing, it did not “cure” her any more than a prosthetic leg “cures” an amputee.
It has made her life immeasurably better and opened doors that would have been difficult to open at best – and impossible to open at worst. But there will always be a level of impairment. It is so maddening trying to get that point across to someone without sounding like I am whining. Or looking for attention.
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Why have I chosen not to post these things before? Because they are not significant to her story. These are my stories, not Erin’s. My “bad days” right now are mine. Down the road I am sure there will be bad days in Erin’s life and I will share what seems pertinent to this journey she is on.
But right now, from what limited perspective I have of her point of view, it seems to be all good.
So, I’m sticking with it.
