Raising the Goddess of Spring

 

 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...