“’She has a few markers that are consistent with Down syndrome.’ I felt like someone told me my entire family had just died. I felt like I was in a nightmare. ‘I’m not equipped to handle this.’ I listened to my nurse talk about her twin brother with Down syndrome. I couldn’t believe it. That was the first moment where I felt, ‘Maybe I can do this.’”
“I remember being so excited for my due date. Then we went to the doctor and saw our baby, but no heartbeat. Suddenly, it was over. My jeans fit again. I stored the congratulatory letters in a box. Friends told me to ‘move on.’ Weeks later, I was shopping when a woman pushing a newborn in a carriage walked by. I started to cry. Another woman turned around and gently smiled. ‘It is so tough. 20 years later, I still wonder what that child would have been like.’ Tears fell from my eyes.”
“His lesions were so severe he couldn’t eat. Rashes covered his entire body. We had to inject him with Pedialyte every 15 minutes just to keep him from passing out. In the midst of trying to be a normal family of 3, we suffered 3 miscarriages. Here we were, emotionally and physically exhausted, still yearning for hope. Little did we know, after 11 pregnancies, baby B would surprise us with blood in his diaper at just 2 months old. We knew something was terribly wrong.”
“I stand there for a moment, clutching those two bottles in each hand, silver lids removed. I’m angry. I’m sad. ‘Why did you do this, Kara? Why?’ I need you to know, as devastating as The Decision has been for all of us, I will fulfill my promise to you. I bet you didn’t know it would force me back here, to a magical place I equally loathe and love. But here we are. It’s been 340 days.”
“‘Did you see what she’s WEARING?’ ‘She got fat!’ ‘God, she should date guys her age!’ ‘WHY doesn’t she just wear a bit of foundation?’ My children were right there.”
“I was alone when they told me. I do remember carrying my still squirming baby boy up the stairs to his room and collapsing on the ground next to his dresser, unable to move, unable to even cry. A strange thing happened during this time. I grew up. I got tough. To the rest of the world, it was a defect, but to us, it was precious.”
“The words were written in a letter addressed to my soon-to-be husband. Was the author right? Did he deserve better? My emotion overflowed from my eyes and ran down my cheeks.”
“At 17, I got pregnant. Life completely changed. After discovering my husband’s double life, I went into the shower to find a white spot under my arm. I tried to scrub it off, but it wouldn’t move. Every time I checked, the spot was bigger and bigger. ‘Is it cancer? Is it contagious?’ I asked the doctor.’There’s no cure.’ As he pulled up pictures on his laptop, I began to cry. ‘I’m going to be a monster.’ Here I was, my marriage ending, horrified no one would ever want me again.”
“For so long, I thought the compliments were genuine. People would brag about how smart my brother was and be in awe over my sister’s art, while I got a pat on the head for just being…me. When I’d move my head out of the way and say, ‘Don’t pat my head,’ I got, ‘Your daughter shouldn’t talk to me like that. You should teach her manners.’ If I said ‘no’ when being asked if they could shake my hand, because they ‘always wanted to shake a little person’s hand,’ I was ‘rude.’ I felt trapped.”
“She withdrew into her own world. I would stand right in front of her, screaming her name. She didn’t even acknowledge I was there. The doctors called it autism. It was still up to me to figure out how to make it better. I pushed everyone away, including my husband. A mother is only as well as her sickest child.”
