Raising the Goddess of Spring

On March 21, 2022, Maia, the Goddess of Spring, turns 27 years old.  She's been in our lives 22 years longer than predicted. These are the bonus years. And this girl - she continues to be amazing.  The other day, we picked her up from her group home where she has lived since becoming an adult. Without words, she shared how happy she was. She giggled all the way to our house, she giggled at us, our dogs, and giggled all the way back to her home. When she is happy like that, my husband and I talk about it after she leaves, remarking on what a good day she had, and how amazing it is that she is still relatively healthy and happy. I always get reflective around her birthday. As she gets older, this hasn't changed, but the way I viewed her birth and her life, has. If you have read my book, you know how much I initially struggled with her diagnosis. But, I also reflect so often, especially when talking to all of my C22C friends (and they really are such good friends), just what all t

  Honoured to be interviewed and have my book chosen to be featured for Think Genetic's Book Club! (thinkgenetic.com) Link below  Rare Chromosome Disorder Awareness Day Book Spotlight: “Raising the Goddess of Spring” by Stephanie Rese

"About 50 percent of all first trimester miscarriages are because of chromosomal abnormalities."   The above link will take you to an article that talks about this little-discussed topic.  Women experience miscarriages.  Some of us, like myself - have a lot of them.  This is a picture of my husband and me on a trip to Hawaii around 1993 during the time we were trying to have a child. Don't we look young and healthy? Full of promise? No glaring health issues or anything physically wrong that would prevent me from having a healthy baby, right? I remember this trip because I had thought that it would be the last trip we had as a couple before we started our family. We had been together for about 8 years. It was time, and it was going to be perfect and easy. Right? Shame comes from misconceptions about why miscarriages happen. The belief that we may have done something to cause it...society's expectations of women...so many emotions go through our minds when we experience

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

I have to say, that it's slightly anxiety-provoking for me to go looking once in a while for the reviews starting to show up on the different Amazon platforms. Amazon will only share reviews of the book on the various country's sites - so I sort of check them out once in a while to see what people are saying. This is one posted recently on the UK site. Thank you to whoever took the time to share this review below, I'm so glad the book was what you hoped for. ......................................................... "5.0 out of 5 stars Must Read for Families of Children with Rare Diagnoses I'll be honest, I've been looking forward to reading this book since I knew it was being written. I'm the parent of a child with a rare diagnosis and Stephanie Rese and the group she established has been such an amazing support to me. This is an outpour with the experience knowledge and humility to write brilliantly on this topic. The book did not disappoint. It is well w

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