I am just a mom to three boys, one of whom happens to have Cri du Chat syndrome. I have always wanted to be a mom - since I found out that girls get to have the babies, I wanted to be a mom. This blog is not intended to represent everyone's feelings or all of the realities out there. It is about me and my family. My fears and worries. My joys and victories. And my family's journey.
Today, I read a story about a mom whose son (45 years old and with Down Syndrome) was sexually abused in his group home. This mom is 88 and she is scared because who will make sure her child isn't abused by the subhumans that inhabit the shadows of this planet? Who will be there for her child when she is gone? I know exactly what she means.
Even though my son is 5 and I am 44, I am already terrified of what will be. I cannot think of it because there is no one in this world who fights harder and can understand his needs like his mama. What if someone doesn't pick up that he hasn't urinated in 18 hours and so he likely has a bowel blockage? What if someone doesn't realize that the cough he has is turning into the "bad" kind? What if someone hurts my sweet boy who loves everyone? What if he is sad and no one notices? What if he is lonely and doesn't understand where I went when I die? Wouldn't it be better for him to die before me? Can I outlive him? These are not thoughts that I ever realized I would have about a child. I know that every parent worries about their child's well being, but having to worry about a person who cannot speak or tell you what they need or if they have been hurt by or are afraid of someone? That is horrible. And yet, here we are.
My goal with this blog is to illuminate the dark corners of this existence to connect with other parents on the special needs journey. Also, to give a glimpse of what this trip is like for us.
Today, I read a story about a mom whose son (45 years old and with Down Syndrome) was sexually abused in his group home. This mom is 88 and she is scared because who will make sure her child isn't abused by the subhumans that inhabit the shadows of this planet? Who will be there for her child when she is gone? I know exactly what she means.
Even though my son is 5 and I am 44, I am already terrified of what will be. I cannot think of it because there is no one in this world who fights harder and can understand his needs like his mama. What if someone doesn't pick up that he hasn't urinated in 18 hours and so he likely has a bowel blockage? What if someone doesn't realize that the cough he has is turning into the "bad" kind? What if someone hurts my sweet boy who loves everyone? What if he is sad and no one notices? What if he is lonely and doesn't understand where I went when I die? Wouldn't it be better for him to die before me? Can I outlive him? These are not thoughts that I ever realized I would have about a child. I know that every parent worries about their child's well being, but having to worry about a person who cannot speak or tell you what they need or if they have been hurt by or are afraid of someone? That is horrible. And yet, here we are.
My goal with this blog is to illuminate the dark corners of this existence to connect with other parents on the special needs journey. Also, to give a glimpse of what this trip is like for us.
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