We know that you want to protect your child. If you did not want that, you would not be reading this book! Having a child face something like a DSD will bring out the strong protective feelings in many parents. You want to know how to help.
One of the things we have been saying in this chapter—and will keep saying throughout this book—is that, to help your child, you have to start by recognizing the ways that you yourself have been affected by having a child with a DSD. It may feel self-centered or even selfish to think about your own feelings and needs at this time. But thinking about yourself will help you to feel well enough to help your child.
There is another really important reason to think about what you are feeling and experiencing. That reason is this: If you don’t think about your needs, you may, by mistake, make choices for your child not based on what he or she needs, but based on what you need. For example, in your desire to protect your child, you may think you have to make big, irreversible medical decisions because you must protect your child from any possibility of ever being teased for having a DSD. But if you slow down and think about it, you may realize your child has other needs that may speak against making such big decisions for him or her right now, before you know what he or she really would want. For example, you may slow down and realize that you really want the DSD to go away as much as possible; it stresses you out and makes you worry for your child. But it might be best for your child if you wait on some or all of the optional medical procedures being offered to you. Waiting can give him or her time to make those decisions; waiting can mean you and your child may get more information about how well the procedures being offered to you work; waiting can mean you give your child the message you accept your child as he or she came, and that you respect your child’s ability to make decisions about his or her own body.
But again, to sort all of this out, you have to take care of yourself. A strong support system is key to helping your child. Parents of children with DSDs tell us it is very helpful to connect with other parents who have had similar experiences. (You may want to use Chapter 7 OTHER RESOURCES (WHERE TO LEARN MORE) to find support groups, and you can also ask your doctor for help finding support.) A good support system will help you know more and feel better. As your child grows, it will also help him or her know more and feel better.
Chances are that, like you, your child will also sometimes experience feelings of grief because she or he has a DSD. Typically young children feel the pain of grief and then distract themselves with the normal activities of everyday life. Even though a child’s period of grief may be short, it can be very intense. Children often show their grief through the way they play. For example, a preschooler may scribble very hard and fast with a crayon when he or she is anxious about facing a visit to the doctor. Your six-year-old might begin to suck his or her thumb again. Children only deal with as much grief as they can handle at any time. They sometimes let us know it in indirect ways. And some of their grief may be put off until they feel safe enough to deal with it.
You can help your child cope with grief by talking with him or her and creating a relationship in which he or she feels safe expressing feelings. It may be difficult for you to see your child feeling badly. But it is a mistake to run away from your child’s emotions or to try to make them disappear in an instant by distracting the child or simply telling him or her “everything is going to be fine.” It is crucial to allow your child to feel whatever it is he or she is feeling, and to allow your child to say or show what he or she is feeling. Your children need your time, care, support, honesty, openness, and acceptance. They need to work through their own feelings.
As you go through your own emotions, your children will be watching and learning from you. Your children will adopt some of your strategies, and create some of their own. Their feelings will sometimes match yours, and sometimes they will not. The important thing is that you honor their experiences; recognize them and accept them with love. It is important for your children to understand that you are human, and so are they. They will not always feel or act the way they wish they would, any more than you will always feel or act the way you wish you would. But by accepting them as they are, by listening to them and staying with them, you will teach them understanding and love.