dylan's story

Oh, yes,yes. Everything you said. When we found out that AdiaRose had trisomy 13 I was relieved to have a definative answer as to why she died, because I was so sure it was all my fault. My next feeling was one of great protectiveness towards her, for exactly the reasons you described. I think my exact words to my darling husband were; "If anybody says to me that it's better this way I will KICK them. Really hard. I am so sick of neurotypical people treating people with disabilities like they are less than, like their lives have less value. She is not a bullet to be dodged, she is our beloved daughter and she is perfect the way God made her."

I don't know if you have read any of William Stillmans books about autism, but he talks about whole souls in a broken body. I really feel like trisomy 13 was just the mechanism of her bodily death, because when I looked at her I felt I was in the presence of a soul that was very old, and deep, and far, far beyond me.Like she never meant to stay. In looking back at all of the events leading up to her birth I can see that she stayed off the radar, and stayed with us for as long as she possibly could. We were taken care of in ways we didn't understand then, but which make perfect sense in light of her death.And iIf they had tried to save her by delivering her earlier, she would have died sooner. And she brought us such joy, such love.

She is deeply missed, and mourned. We wish she were here. I know it is selfish, and doesn't take into account how she might have suffered, but if in some alternate reality she could somehow be here, I would give so much to hold her and love her and take care of her.

I guess towards educating the ignorant, I would point out that any day, in many, many ways, any nuerotypical person can suddenly become a person who is very disabled. I think most people would want their child to live, and would take care of them and do any thing they could for them, because they love them and don't want to live without them. Why should it be any different for Dylan or AdiaRose?

Thank you for your post, Joanna. With lots of love, Jen