Written by Amy, Lily's mom 

We received our daughter’s diagnosis of spina bifida when I was 20 weeks pregnant. She wasn’t even here yet, but I desperately wanted to know how to plan for her. What help would she need? Did I need to quit my job? Should we downsize our house to make sure we could afford her care? Could I handle her medical care? I read, researched and combed through test results looking for answers, but answers weren’t there. I’ve learned that clarity is most likely to come through experience, patience and relationships. My advice:

  1. Get to know people who have experience with your child’s diagnosis, e.g., other families, nurses, local associations. Build a network. Ask questions. Learn via their experience.
  2. Let your children show you what they are capable of, and encourage them to try new things. They may need to do things differently. It may take a lot of time and patience, but wow is it exciting when they finally “get” something new!
  3. Celebrate every effort and “inch stone.” Because things are often harder for our kids, it’s important to build resilience within them. Celebrate acts of trying (not just being successful), and “catch” your kids doing little, but great things (“Nice job using your left hand! I know that’s really hard for you.”).
  4. Be an active participant in your child’s care. While medical professionals are skilled in their craft, you are the expert on your child. Don’t be afraid to speak up and ask questions.