“The bonus is, it’s not contagious. You wouldn’t expect the person with a really bad flu to get up and do stuff, no way! So, tell them to rest up. Lay out in their pajamas. Surround them with pillows and things that make them happy. You would never tell them to snap out of the flu!”
“People often feel awkward asking questions about my daughter. Penny gets sidelined from activities and events because they don’t know how to welcome her. The message of inclusion is, ‘We want you here with us.’ But belonging emerges from a deep desire to not just include the ‘other,’ but to love and be loved.”
“I woke up with a sore knee. We ignored it… until the pain became unbearable and was spreading. It all happened so fast. I was too overwhelmed to be scared. However, I was confused. We all were. The tricks I used to gross my friends out ended up being a piece of the puzzle. Hyper mobility, one of the most obvious symptoms of EDS.”
“‘Why my son?! Why me?!’ We went home and packed up his clothes, toys. His grandparents held onto everything else. We couldn’t bear to. But we destroyed the Rock ‘n Play he died in. I’ve seen news stories about their recalls. Of course, it makes me wonder if that’s what happened to my son. We will never know. Within weeks of his passing, I was pregnant. Intentionally. Family was concerned. I didn’t care.”
“When I first met him, I was cleaning tables at McDonald’s. He was so sexy and had the most beautiful blue eyes I’d ever seen. And he just HAD to hold them on mine. We parted ways, but later I found him on social media. I essentially moved in that first night.”
“My daughter Maya is 2.5 years old. She has all these little toys she plays with under strict supervision. Somehow, she managed to smuggle one up to bed. I quickly yell to my partner. He’s there in seconds, telling me to call an ambulance. So, I’m screaming words that don’t even make sense down the phone to 911. ‘This must be a dream, this can’t be happening.’ Right at that moment, I thought she was dead.”
“’Can you leave? We are having girl chat.’ I left and sat alone in the field. Teachers would laugh when I’d tell them I was being bullied. I cried and prayed to God, ‘Please let me wake up and be a girl.’ This is me. I am a woman.”
“‘Have you been notified of that boy’s roommate at the group home?,’ he asked. ‘We have not,’ I replied. ‘Would you be willing to meet him?’ 3 months later, he was moving in with us hours before his first day of high school. We found out I was pregnant by surprise. ‘This is crazy. We can’t do this, right?’ We were going to have 2 babies and a teenager with PTSD. Less than a year ago, we had no kids.”
“When I’m in public, I’m constantly apologizing for our family. I whisper, ‘Shh, baby. No shouting please.’ But yesterday, a grandmother-type woman stopped me in my tracks.”
“I’m in Starbucks. I manage a smile and lie. ‘Soon.’ I rush out the door, no coffee in hand, and cry in my jeep. ‘When are you having kids?’ ‘Have kids already!’ ‘I’m ready to be a grandma. The clock is ticking!’ they say. But when I stillbirth? No questions, words. Just silence. My husband battles silent resent. ‘No baby, no marriage.’ These weren’t the vows I signed up for.”
