Sarah's Story

At the beginning of the COVID-19 pandemic, Hartland Township mom Sarah Raphael found herself pregnant again. 'I'd already been going through some dark times because, I think with a lot of people, the pandemic was really anxiety inducing,' Raphael said. 'I wasn't excited about it. There was really no joy. We always planned on having a second child, so I knew it was in my future, but (in the middle of a global pandemic) it was really terrifying.' Raphael was already in the throes of postpartum. Her son, August, was born in August 2019. A few months into her second pregnancy, she had a blood test to learn the gender of the baby — hoping to connect with the pregnancy. Then, the phone call came. Her baby had an 84 percent chance of having Down syndrome.

'That was very difficult to swallow. I actually made a joke on the phone saying, 'Well the only reason I did this was because I wanted to know the gender of my baby,'' Raphael said. 'I wasn't really expecting anything out of the ordinary to come back. I don't think anybody ever does, to be fair. There wasn't the happiness and the joy. It kind of went in the opposite direction.'

Raphael said she's battled with depression and anxiety her entire life, and she stayed in the depths of depression for the rest of her pregnancy. 'I didn't want to talk about it. I didn't want to reach out to other people in the community. I didn't want to learn about Down syndrome or parenting a child with Down syndrome. I just felt shameful, and shame is a very dark emotion,' she said. As her pregnancy moved along, Raphael and her husband, Dan, were asked if they wanted to consider termination. But for her mental health, they kept on. 'We just knew this child we're bringing into the world is going to change it for the better,' she said. 'I just somehow knew deep down inside that she would change me and that it would be good.' Halle was born five weeks early on Dec. 2, 2020. She'll be three years old in December. 'Our world is so amazing with her in it,' Raphael said. 'I'm just so glad that everything has worked out the way it has.

Life is different than other people with neurotypical children and we have a lot of medical therapy appointments, but she's the light of my life. She just totally changed my world. She saved me.' A few months after the birth, Raphael said, her mental health took an upward turn. She found an online support group out of Ferndale called Honey For Moms. In that group, she met a woman who had a baby with a rare genetic condition. 'She and I connected just in the sense of what it's like to have a child with a new baby with a disability and everything that we'd both been through,' she said.

She later discovered Extra Lucky Moms, an online support group for moms with children representing all types of disabilities. Recently, a book titled 'Dear Mama: Stories of an Extra Lucky Life' was published, featuring an essay from Raphael. 'What I wrote in the book is what I needed to hear when I was in that place,' she said. 'Because it just didn't exist out there for me. What I needed to hear is it's OK to feel however you're feeling in that moment and I'm glad now that I'm on the other side of it.'

The book features 28 essays written by moms of children with Down syndrome, autism, limb differences, muscular dystrophy, cerebral palsy and other rare genetic disorders. 'If you had this book in your hands, then you'd be able to read these stories and know there's light at the end of the tunnel and everything is going to be OK and you're not alone,' Raphael said. She said the process of writing the essay was incredibly healing. 'I was able to take some of the emotion I'd been holding inside and just give it to paper,' she said.

View original article here. You can purchase Dear Mama: Stories of an Extra Lucky Life here. (Use code HALLE10 to save 10%)