When we were first told that Sam had SMA, we went straight to the Internet and the library to do our own research. In our hearts, we wanted to validate what the doctors said. More than that, we wanted to know everything that was possible to know about his condition. Later on, when we found out that he had Prader-Willi Syndrome instead, we did the same thing. Our research helped us in many ways. I think, more than the practical information that we gathered, it was also a way of dealing with the situation. We were scared and kind of lost, and doing something in the way of research empowered us somewhat.
This comes in two ways – from family and friends who are close to you and then from other people who are in the same boat. I never knew how important family and friends could be when it came to support. As I mentioned in the first post in this series, Sam’s condition has brought our whole family closer together as we have never been before. The same thing goes with friends. My sister and husband have never been closer to their friends.
As for support groups, they can relate to your situation in ways that friends and family might not be able to. They can offer advice and support since they have gone – or are going – through the same thing. More than this, you can actually feel better as you share and give your support to others as well.
This is a very important thing and will stem from your research and consultation with doctors. As you find out more about your child’s condition, you can plan ahead and think about what your child is going to need – both for the short term and in the long run. You can search for services and other resources that can help you and your child.
Now that you’ve gone through the diagnosis and the mourning period, you are ready to face the challenges that the future brings you. It is not going to be easy but it still is going to bring out the best in you.