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During a recent interview with “Exhale,” Boris Kodjoe & Nicole Ari Parker spoke candidly about learning of their daughter’s spina bifida diagnosis, which is a birth defect that affects the development of the spinal cord. Unsurprisingly, the couple say that they were devastated when they learned of her illness.

“We went from being the hot Hollywood couple with a perfect-to-be baby to completely devastated, shocked,” Boris confessed to host Malinda Williams. “It was something we couldn’t possibly have ever anticipated. We were helpless, we were lost. It took us quite a while to find our bearings and get used to this new norm that we were facing.”

But, the couple learned a big lesson that came in a teeny, tiny package.

“Sophie was actually instrumental in teaching us how to do that. Her spirit, her attitude was always, she was this little baby who was always smiling and she looked at us like, ‘Why are you crying?’

After they got post the initial shock of the diagnosis, Boris and Nicole learned to accept things for the way that they are and began focusing on how they could make their daughter’s life as full as possible.

“So we figured, okay, this is what it is. This is our norm. She doesn’t know any different and it’s up to us to prepare her and equip her for this life that’s hers and make sure that she has all options and all opportunities that anyone else would have.”

Nicole revealed that she worried a lot about how Sophie would be able to function once she’s out in the real world.

“I think Sophie is so strong, but part of the anxiety was the normal mom worrying about the future. Okay, how is this going to happen? How are we going to get to school? How do we explain to the teachers that we have to show up every 3 hours and interrupt her and get her attention and say ‘Let’s go to the bathroom?’ What about her friends? What about when she starts dating? She can’t do sleepovers. She still sleeps in a diaper. What about the questions?”

The mother-of-two eventually learned to work through her anxiety about Sophie’s condition by taking things one step at a time.

“Someone said, ‘Answer the question that’s asked.’ Meaning, don’t worry about what’s going to happen when she’s 14. If a 5-year-old classmate comes up to you and says, ‘Mrs. Kodjoe, why are you always here?’ and I say, ‘To help Sophie go to the bathroom.’That’s the answer to the question. And you know what happens? They all go, ‘okay.’ And I don’t have to put any more on it. So that was the beginning of my healing process was each day at a time.”

Their strength is inspiring.

Watch a clip from their interview below.

http://c.brightcove.com/services/viewer/federated_f9?isVid=1

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