2. Celebrate your child for who they are, a child that is living.
3. Your love for your child and his or her love for you is a life well lived.
4. You don’t have to be strong enough for the next three years, you just have to be strong enough for today.
5. You’re not performing for anyone else – feel happy when you’re happy – feel sad when you’re sad.
6. Promise yourself to live long enough to see a time when you can truly experience joy.
7. You’re not neglecting your family by going to work and focusing on work rather than your pain.
8. We’re more than just our bodies. This little spirit is visiting for a while and we’ll see him again.
9. Every time I began to descend into the rabbit hole of what-ifs, I reminded myself of a story a very supportive mother of a child with Tay-Sachs told me. When she told her healthy son that his sister had Tay-Sachs and would pass away, he turned to her and said “but not today, right?” So I chased those rabbits away with the mantra “not today.”
10. The priest who baptized Ethan contracted meningitis and encephalitis in South America, which has a 90% mortality rate. He was in a coma for a week and went on to have seizures. He told us that he was never in any pain or even aware of the seizures or coma and that it was much harder on his wife who watched them.
11. Give yourself permission to say, “it’s emotionally complicated.”