Learn to Go with the Flow
We had come to grips with my daughter’s Ataxia-Telangiectasia diagnosis years ago. But though I knew how this illness could progress, I soon realized that you are never prepared for serious illness in your child. So the most important thing is to go with the flow. Everything is going to change--repeated visits to the doctor and hospital, physical and occupational therapy, multiple meetings with school officials.
The right way of your family’s routine becomes the wrong way. "Normal" is something completely new and different. Rather than waste your energy trying to resist the change, give in to it. Try to make the best of what has been given to you. It won’t be easy, but it will make everything more manageable.