Maybe you are not at all worried, concerned, frustrated, or angry that your child has a DSD. If that is the case, that’s great…but it’s pretty unusual.
Just accepting that your child has a DSD may be difficult. In fact, it is common for parents at first to not believe what the doctor is saying. Acceptance is a process: it doesn’t happen in one magic moment. But to begin healing the sadness or anger that you may feel, you will find that you have to acknowledge the truth, including the truth of your child’s situation and the truth about your own feelings.
Like many parents, your first fear may be that your child is sick. Your child’s doctors will try their best to help if your child is sick. But your second concern—perhaps a close second—may be that you want your child to grow up feeling normal. As to that, we can tell you from lots of experience that your acceptance of your child is what will make your child feel normal. Before you can do that, you may first have to learn to accept your own situation. That can take time, because chances are that you were not expecting to have a child with a DSD.
A lot of parents of children with DSDs have said that they felt a sense of loss when they found out about the DSD, because they felt like they had lost the child that they were expecting (that is, the child without a DSD). This is an emotion that has also been felt by parents who have had a child born with Down syndrome, cleft palate, and so on. Especially if the DSD is diagnosed when the baby is a newborn, you may feel yourself grieving the loss of the “wished-for” child.
What’s involved in this grieving? You may have heard of people talk about the “five stages of grief.” Those are: denial of the truth; anger; “bargaining” with God or the universe for something less scary; depression; and acceptance of the situation. You may find yourself going through these stages, but the process of grieving is different for different people. Some other common feelings for parents in your situation are shock, disbelief, anxiousness, fear, curiosity, embarrassment, confusion, and helplessness. Some parents have physical reactions to the situation, so that they lose their appetites, are unable to sleep, have headaches or upset stomaches, or feel very tired. Some find it difficult to talk with their spouses, even though it is very important to talk often and deeply with one’s spouse during this time.
We know it can be hard to talk about sex, especially when we are talking about the sex development of children, but a lot of parents tell us that it is very healing to talk about their experiences and the child’s DSD. Our culture often teaches us to feel ashamed about sex and not to talk about it. Shame comes from our fears and lack of understanding about things that are different. So you may feel ashamed or embarrassed about your child’s DSD. And you may get a domino effect from this: Some parents say that their greatest guilt comes from feeling these negative feelings—shame and embarrassment—about their children. Like some other parents, you may fear not being able to overcome these feelings. But it is very important to try to put into words what you are going through, so you do not go through it alone.