special needs

‘No eyebrows and eyelashes,’ she said. I hadn’t noticed his lack of hair. She ran her hand across his sweet face. There was a concern.’: Mom learns of son’s rare CFC syndrome disorder, but keeps ‘pushing forward’

“Our midwife came in and hugged me. ‘How are y’all doing?,’ she asked. It was all too much. What did she mean by ‘abnormalities?’ I stopped her and asked. That’s when the rest of the conversation disappeared from my memory. I would NEVER let this define Nolan.”

‘I need to tell you something.’ He teared up. ‘How do we fix it?’ I took my sweet little girl to the car, and buckled her in. ‘There’s nothing wrong with you. You’re perfect!’

“The schools just thought she was lazy. They would dismiss me. My sweet daughter’s personality started changing drastically. Kids were mean, teachers were hard on her. She was scared. We would try to help with homework, but she would cry and pull her hair out. One teacher actually put her outside and FORGOT about her.”

‘I got the test results. I felt I let my husband down. Like I somehow failed to give him the ‘perfect’ baby. The silence was deafening. I kept thinking, ‘Why me?’ Then I thought, ‘Wait, why NOT me?’

“I had a woman sob in my arms out of sympathy. I remember telling my husband, ‘Do you think we’ll ever laugh or be happy again?’ I figured I had 3 choices. Give up, give in, or give it everything I’ve got. I had a little boy growing inside me who I needed be strong for. I went with option 3.”

‘I was told it was the ‘Cadillac of disabilities.’ His pediatrician even said, ‘Out of all the heartbreaking disabilities, his is also heartwarming.’ Down syndrome isn’t easy. We ARE special.’

“I’m here to call us out on all of our mild-mannered modesty. I’ve realized we ARE special, and we deserve that title. No, not everyone can do it. You are different. Your child is different. I am tired of wearing the martyr mask with an ‘aw shucks’ and a ‘not little ol me.’”

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