Raising the Goddess of Spring

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 ...

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 ...

  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 experienc...

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

 

 So happy to share the good news! You can get our book now on most Amazon platforms. This is the link for Canada but you can get it on the US, UK and other platforms in Europe as well! Stephanie

We are close to the launch of our book. Here is a sneak preview of the front cover! Follow our book page on Facebook to make sure you don't miss any news or updates! I cannot tell you how excited I am! Please share with your networks!!! Our book is 300+ pages, with 19 chapters, and lots of stories - mine and those of many other parents interviewed raising children with rare chromosome disorders. I am very proud of what we have done. I would also like to share that Dr. Beverly Searle, of Unique, the Rare Chromosome & Single Gene Disorder Support group, has provided the foreword. I am so honoured to have her voice included. My personal hero since Maia was born, Dr. Beverly Emanuel, has offered a kind recommendation and I have placed it on the back cover. To my knowledge, there are no other books on the market that include all of the topics we cover in one stand-alone book - not only do we have an amazing chapter on understanding chromosomes by Dr. Melissa Carter from the Childr...

  Where are we at?  I thought it was about time I let everyone in on our progress towards publishing our book. We have chosen to self-publish. After thinking about the benefits of maintaining control of our rights and really just wanting to put this out, and after a huge learning curve on my part, we have chosen to go with Amazon (Kindle Direct Publishing). I spent most of my Christmas holidays preparing the index, and really, except for the cover work, that was the last major task to complete. We are days away from uploading the draft along with the cover and ordering a physical proof copy to ensure everything looks perfect before we go live. A few weeks maybe? Can I believe we are here now?  No...considering that we starting planning this book in 2010! A lot of thought, research, interviews and soul have gone into our 312 pages, 19 chapter guidebook for families raising children with rare disorders. I think I have gone over it a million times. I am almost done with the ...

   ...that is what my daughter has lost.  (Pic from September 2019) More than me, my husband, my kids - most of society really, and it continues. We are now in stage 3 of this pandemic. That means, if you are not living in a congregate care setting like my daughter Maia, you are allowed to resume - with precautions - any number of things. Go to the movies, buy ice cream at the corner store, sit in a restaurant, or get your nails done. Maia has been locked away from the world, like everyone else living in congregate care settings such as long-term care or group homes, since March. As a mom, this has been incredibly devastating for me. The guilt that I felt when I chose to place Maia in a group home setting at age nineteen has been magnified 1000 times because of the policies which continue to exclude families like ours, around the province. We are in stage three of the pandemic, in a northern region where our cases have been non-existent for most of this month....

I'm not going to lie, I've been spending an extraordinary amount of time at my computer today. Like now - what - it's after 10:00 p.m. and I should be going to bed. I've been at this final bit for the past 10 hours. But I can't relax yet. I'm too giddy. This week was the week that I felt like I was ready to put this project out in the world... and I have done so much work. Book proposals aren't just sending out a pristine manuscript - nuh-uh...they have comparative book analyses and lengthy pitches on why your book deserves a shot at the shelf.  We have got a lot going on behind the scenes here, and while we (I have two co-writers!) await a few more professional reviewer's comments, we are close enough that we can pitch this baby out the window to the world. Of course, this is when all my self-doubt kicks in. We can only send three of the twenty chapters for a start - gosh - how can I choose? I sent four. I couldn't decide. What if I should have sent...

My dad is Bill Rese.  You won’t be able to search for him anywhere on the Internet, because he’s a quiet, unassuming kinda guy.  But he deserves a shout-out, so here goes… I know this blog is supposed to be about Maia and all things genetic,  but well, if this isn’t about genetics, I don’t know what is.    My Dad has had a huge influence on me. I have all these awesome qualities (so I like to think). I am a decent cook, love to travel, am crazy about dogs, have tons of energy and love a good adventure. I got all that, and more, from my Dad. This guy is turning 75 on Monday. Because of COVID, I am not going down south to visit him right now for this amazing milestone. He’s not coming up to help me celebrate turning 50 next month, either.  I need everyone to know about him so you can understand me. In my entire 50 years, he is probably the ONLY person who has NEVER said a bad word about me (not like I haven’t deserved it once in a while…. but he h...