Raising the Goddess of Spring - Stephanie's experience as a carrier of a balanced chromosomal translocation.

 



Are you a carrier of a chromosome difference? I'd love to hear your story. Send me an email at stephanie.rese@gmail.com


Comments

Post a Comment

Popular posts from this blog

The Adoption Option

Image
Excerpt from "Raising the Goddess of Spring: A guide for parents raising children with rare chromosome disorders." We had thought about adoption early on in our relationship, even discussing it before we got married. A few years after we had Maia, we tried foster parenting through our local children’s services agency. We learned that this route might be the quickest way for us to adopt, as we might foster a child who could potentially become a crown ward and then be eligible for adoption. After a year, we quickly realized this was not going to happen anytime soon. We had our names on the list for adoption with our local child and family services during our 20s but knew that young children who became available for adoption were rare. Having a child with special needs ourselves would likely mean we would be less likely to be chosen by a potential birth parent, someone who might be more likely to select a childless family who could dedicate all their time to that child. I was ...
Read more

The Goddess, Group Homes and Guilt - One year later...BOOK EXCERPT INCLUDED

Image
It has been just over a year since the pandemic began. COVID has stolen a lot – from all of us. For my family, it has stolen time. Time away from Maia. When the first lockdown began, we were not able to visit Maia in her home nor bring her home to visit. For six months. All we were allowed were visits at the end of the driveway, wearing a mask, without so much as a touch of her to let her know we loved her and wanted to hug her so badly. She couldn’t possibly understand. Maia has recently turned 26 years old. We were with her this year, unlike last year when her epic 25 th birthday party was cancelled. Maia at home, Spring 2021 It still haunts me, that period of time. What could have possibly gone through her mind? Would she live through this? If not, would we ever get to hug her again? The guilt. The guilt was compounded by the fact that we had chosen to have Maia live in a group home for other adults like her, because we struggled to raise her any longer at home, for a lot of reas...
Read more