“This feels like the weight of the world because it’s about your entire world: your precious child. Every prenatal screen passed with flying colors. They tell you your child is healthy and whole, and now, they say that very same child has special needs. Here’s how you reclaim your power.”
‘It’s okay. Get in your car and scream. It’s not going to make everything go away, but you deserve the release. Are the tears coming now? Good, don’t stop them.’
‘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.’”
‘Oh my Gosh, she’s a baby. ‘I’m saying yes,’ I typed to him in Afghanistan. ‘Say yes,’ he responded simultaneously. ‘We’ll take her!’ I nearly shouted into the phone.’
“‘Dad has to move to Colorado,’ I told our sons. ‘He doesn’t have a choice’ ‘We’re not leaving her, right?,’ Aidan interrupted, his tone laced with terror. ‘We can’t just leave her!’ His voice was sandpaper rough, speaking the words I couldn’t. ‘We…we might have to make a tough decision.’ ‘I know,’ I whispered.”
‘I was talking to and rubbing my belly. ‘I’m thankful for you. I love you no matter what. You are my child, and I will treat you as I would treat any child, even if I have to do this by myself.’
“Angelica was admitted into the hospital for emergency surgery. As I was leaving all of my emotions hit me. I felt so overwhelmed, my newborn baby was in the hospital, and now my wife. I felt helpless.”
‘She is literally an angel from heaven. But We. Were. Terrified. Instead of leaving the doctor smiling, we were scared. ‘There’s something wrong with the baby!,’ we sobbed.
“I was a first-grade teacher. My students didn’t know anything was wrong with the baby. It was difficult. They didn’t understand why I was out so often, why I wasn’t myself. I felt isolated. Alone. Misunderstood.”
‘Mommy am I going to get so sick that I die?’ These words tumbled from his lips, my heart broke into a million pieces. All I could do was hold him close as tears ran down my face.’
“I spent many a night convincing myself the diagnosis was wrong. I mean doctors mess up test results all the time, right? At first the guilt of knowing we passed on the gene for this condition was all-consuming. Even though we had no idea, we still blamed ourselves.”
‘It could be worse.’ Yes. It could be worse. No, I didn’t lose my child. But our children, my child, have lost a lot.’
“Some of you are screaming at me right now, ‘WE GET IT – YOU HAVE A SPECIAL NEEDS CHILD.’ But I wonder still, do you get it? We don’t know if we will ever get to hear him say ‘I love you.'”
‘There is no rush. They may never get to do this again, holding their baby like this.’ As we admired him, there was a quiet heaviness. He looked different. My husband already knew.’
“Had we delivered at a hospital, he would have been taken from me immediately. My heart also aches in pain but I could not possibly foresee what was to come.”
‘Are you prepared to take care of someone with an EXTREME disability?,’ she asked while practically rolling her eyes. It wasn’t a question. It was more of an accusation.’
“His head was shaped differently, his ears were low set and he had an extra thumb on his hand. ‘Did anybody see this?,’ I asked. My midwife nodded.”
‘Once again, my cousin was pregnant and expecting a boy. She was due 6 months after me. She was in a toxic relationship with a man hooked on drugs.’
“We found out she was pregnant with baby number 5. She had decided she just couldn’t parent the kids. My husband and I knew we couldn’t do two babies so close together. My son was only 11 months. Having three kids, two of whom had special needs, it just was too much on us.”
