Five Rules to Live By With a Disability

1. Over my 25 years of surgeries, and in my everyday life, I’ve come to realize that everyone is different. Because you have a somewhat similar situation to someone else, that doesn’t necessarily mean that your journey will be a carbon copy of the other individual’s experiences.

2. Always trust your instincts; you and your child know her body the best, as your child is the only one who has been living in it after all.  Take others’ opinions into consideration, but the ultimate decisions you make should be up to you as a parent/caregiver, because you and your child are the ones who have to live with the resulting outcomes.

3. Adapt, adapt and adapt. God blessed you with a child with special needs for a reason, so do not dwell on a certain situation for too long. Remember, “If at first you don’t succeed, try, try, try again.” God wouldn’t have put you in this position if He didn’t think you were up to the challenges you would face with your child. Yes, living with a disability such as Spina Bifida can be a challenge at times, but learning to adapt in our own particular circumstances can make our challenges easier to conquer.

4. Surround yourself and your children with positive people. If people leave your life for a particular reason, then they were not meant to join you on your amazing journey that we call life. You are probably wondering why I said amazing, because amazing and disability do not usually go into the same sentence. The answer can be found in #5.

5. You can CHOOSE to make your child’s life amazing by purposely doing things that suit your child and her situation. People will guide you and your child to do things their way because that’s what they think is best for your child. Be careful who you listen to for advice, and make sure you believe they are the ones who are looking out for your child’s best interests, and really listening to what you think and how you feel. If they are meant to be in your life, they will never leave your side even when you go in a different direction from the one they advised you to take.

Nicole Small is a young adult with Spina Bifida Myelomeningocele and Hydrocephalus.