Parents of children with DSDs say it can be very helpful to them and their children to keep good records and to do some journal writing about their own thoughts. Here are some ideas they suggest:
Go to a place like Target or OfficeMax and get a metal or plastic file-box that can hold lots of papers. Then make a file for each of these things, and file this material as you get it:
medical records (including lab results, copies of x-rays, etc.)
your notes from medical visits
business cards of the doctors you have seen
special letters about your child’s DSD (ex., letters to your child’s school, correspondence you’ve had with people in support groups)
information you’ve found about your child’s DSD
anything else you think might be important to you or your child later
You may want to leave a note with the file box that tells people to save this box for your child if anything happens to you. This information will be very important to her as she matures.
Many parents find that it helps them to write sometimes in a journal about what they’re feeling. Here are some ideas about what you can write about:
Here’s what I learned today. Here’s how I feel about it.
Here’s a question that keeps going through my head.
Here’s how I felt today or yesterday.
I went back and read some of what I wrote before. This is what I noticed.
Here’s what I’m worried about.
Here’s what I’m hoping for.
Here’s what my child did or said today.
Here’s what else is going on in my life.
Here’s what I think I need now.
Don’t set an unrealistic goal for keeping a journal. Just do it when you want to and can.