1. Work hard to stay connected to your spouse. It is very helpful to like the person when crisis hits.

2. Don’t forget to thank the people in your life who show up time after time when crisis hits.

3. Be ready when crisis hits. Really. If you have to deal with a disease…Always. Expect. That. Crisis. Will. Hit. Because it will.

4. Keep your expectations low about time lines.

5. Never underestimate the power of your child’s resiliency.

6. Do NOT for any second think you can survive a life with special needs kids without a sense of humor. If you loose it, find it; once you have it, hang on to it. 

7. Have your advocate hat on at all times. Do not, at any time, forget that you are your own (or child’s) best advocate.

8. Listen to your intuition. Then listen harder.

9. People will surprise you when you least expect them, but need them most. They will offer you organs if they know one is needed.

10. Remember that your kids still need to have a life, even when a medical treatment robs them and you of precious time.

11. Hang on. Hang on when you are sad and discouraged. Remember that there will be a resolution to the situation. Even if it is a bad resolution…then healing can and will come.

12. Tomorrow can, and hopefully will, be better.

Lucky 13. Thank G0d every day for your family and friends.