How do you react?
Shock, horror, disgust, anger, sadness, desperation.
If you are religious you will pray to God that he will change your baby. He will take away the deformity. He will heal miraculously. If you are one that walks with guilt you will wonder what you did wrong to bring this about. If you are a dreamer you will conjure ideas of the future. You will dream of the future of technology. You will research, hold your breath, talk to other families. You will travel, spend money, seek the best doctor, professionals anything to change the outcome of knowing that your child will grow up different from others.
Now you find out that they will indeed not be what some consider normal but they will be happy functioning people. They will be smart, social and attractive. They will do almost everything that all of their other peers and siblings do. They will have a wide open future. They will have possibilities and maybe, just maybe, this 'disability' will benefit them.You feel good about the positives but continue to worry about the negatives. You are happy that there is nothing 'developmentally' wrong with your child. You are content to know that your child is bright and capable. You are distraught about the abnormal categorization of your child. You know that they will always be looked at differently. That people will have a hard time getting past the 'deformity'. That people will always ask questions and be curious. They will want to know the details, the reason. Inside they will hope that they can prevent the same thing from happening to their children. They don't want to go through this and thank the heavens daily that they don't have to. "Thank God," they will say, "that my child is normal, beautiful, capable, perfect".
You know that people think this to themselves because you would have thought that if you were in their shoes. You know that they think this because you can see it written on their face. They are sympathetic and kind but you know anyway.
You look at other babies and children and think about how you got a bit shafted on this one. Every time a baby is born you look at their tiny bodies and try to see if they resemble your baby's deformity. You look for likeness, you seek out families that are going through the same thing. You feel like a kindred spirit to people who parent or are of the same kind. Even if you would normally not run in the same circle.
You are in a lonely place.