Hope for the future Upon first hearing Lily’s diagnosis, her parents experienced a lot of anxiety about the future. While that does still surface from time to time, they have learned to live more in the moment. “We can look to the future but we can’t predict it,” said Stephanie. “I see so many kids that you think will struggle and they surprise you. We have to [focus on] what we can do today and not compare our life journey to others.” Several years ago Robert focused on long-term goals like Lily being able to drive, graduate high school, have a boyfriend, find a job. But the further the Mott family travels into their journey, they have learned to shift their hopes for Lily from actionable accomplishments to finding contentment, an intentional movement away from societal goals that tell parents when and how children should achieve milestones. Stephanie hopes Lily is happy, that she finds something fulfilling to do every day of her life and that she makes friendships with compassionate people. “We have grown so much individually and as a family with Lily in our life,” said Robert. “I hope society matures in its inclusivity.”
get it,” said Stephanie, who has learned to draw boundaries in relationships with families and friends with typical kids who may not understand what they are going through. “I wish there were more opportunities in the community for dads to get similar support.”
A“
dults need to model for kids
what they want them learn. Eighty percent of communication is nonverbal, so when we’re trying to teach kids something difficult, it’s easier to show them than tell them. ” Stephanie Mott
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