I was given a digital copy of this book in exchange for my own thoughts and feelings about this book. My thoughts are 100% my own.
I had caught up with kas Winters she is the owner of http://www.everythingfamily.net
A blog that is a resource of creative sneaky ideas for parents. This blog comes with tips and tricks both educational and developmental skills to help children have fun while learning or eating their green veggies with out the fuss.
Kas Winters also host a blog talk radio show called sneaky mom and has a huge choice of digital books for sale.
Join Kas Winters, The Mother of Family Ideas, and Word of Mom Radio Host, Dori DeCarlo, on the First Wednesday of each month at 1:00 p.m. EST, as they discuss ideas for moms who are raising toddlers through teens.
@KasWinters on #WordofMomRadio
Kas is one amazing author and Illustrator I’m not sure how she finds the time to write and do all she does. Kas is truly an inspiring women and I am able to call her my dear friend.
Kas has become like a mentor to me even us mentor’s need a mentor of some kind right ? Kas is one of many that I hold near and dear to me even though we have never met face to face.
I have always wanted to publish and write a book. One of the many things we have in common is our love for writing. Our connection grew stronger after I shared my story with her about my own medical journey having VeloCardioFacialSyndrome, DiGeorge syndrome, 22q11.2 deletion Kas has an amazing talent/gift and saw my own tallents as well.
Maybe someday, I will have my story up as a digital copy for you to purchase.
Let me stop rambling of her greatness for a bit, share with you a valuable resource for parents who are experiencing the emotional roller-coaster that comes with a medical journey of having a child with a rare genetic disorder.
Not just any genetic disorder but one that is confusing with multiple symptoms and many names. When you are in the mist of discovering and learning about your child’s medical condition I always tell people I talk with that it is best to read books that are medical based on the symptoms to help better you as the best parent you can advocate for your child with the right knowledge and resources in hand to pass to doctors who are not knowledageable about this rare genetic disorder even be able to pass it on to teachers and other professionals who are working closley with you and your family. The books parents seek are ones that you can look for answers,guidance and hope.
What if I told you there are books written with amazing support and one you can connect with that also has medical answers to some of the questions you’re seeking. Like those quirks Bella has are called sensory processing disorder not her acting out but her trying to figure out how to cope and manage her body being over loaded by environmental factors that she has no clue how to deal with. How would you like to hear first hand stories of other parents who have experience life with a child with a rare genetic disorder sorry adults there isn’t much about adults with it in this book but that’s where this blog comes in handy. I have this disorder and I can stand behind this book and suggest it to parents who are just entering life of the 22q world.
Kas helped Illustrate the book but it’s Sherry Baker Gomez who this story is of her medical journey with her son.
Kas personally knows the author Sherry Baker Gomez who wrote the book Missing Genetic Pieces. Sherry has a son who is 25 at the time of the books publication who is just a bit younger than myself who also has VCFS 22q deletion Velo-cardio-facial- syndrome.
I too am an adult like her son I am 31 one years old and I say there isn’t much in this book about adults with it because the storys are of parents with children with it as well as her son who yes is a adult but it’s about his struggles she has had growing up and some of the struggles she has with as a adult but as each person is different with this disorder this is only one aspect of what adulthood can be like my blog is another aspect as you can see after reading both the two worlds are so different yet the same in some areas. I admire Sherry’s strength as a mom and advocate but her son has more of the complex medical issues then I have had to experience with VCFS 22q. Sherry Baker even explains how each of us are affected by it in different ways.
I found myself compelled reading this book I couldn’t put it down during my trip to Missouri I got told to put my phone away a few times during church services with my cellphone in my hand reading the book trying to discover if her son had a journey similar to my own. He too has had simular issues I have had but so many other issues I have haven’t and I have had issues he had not have. Someday I would love to meet the two and shake their hands and give hugs.
You may not have as much time on your hands to read it back to back like I did but once I get hooked on a book that is a long read full of medical symptoms I soak it up like a sponge with my visual memory.
I loved the medical information that goes along with the story of what her son went though Sherry help explain in simple people terms and not doctor jargon. Sherry’s story touched my heart and I connected with her on so many levels without even having to meet her, I understood where she was coming from her feelings and her frustrations because not only am I an adult with 22q VCFS DiGeorge but I am a mom to a child who also has 22q VCFS DiGeorge.
I love how she explains in her book that not any two people with 22q vcfs digeorge are a like and that is what I have tried to express to the online community for years to see it in writing was just a great moment for me of validation reading her story will give you validation and a source of hope that if she can make it you can too.
With all I’ve read you can now see why I can personally stand behind this book and suggest this book as a valuable parenting tool for new parents who are just stepping on the same path and entering the life of living with 22q vcfs Digeorge.
Sherry Baker offers a list of resources, lot’s of guidance on how she managed, hopes that it inspires parents to be able to cope and become more compassionate towards their 22q VCFS DiGeorge children.
From the time children are born and frail to their teen years and adult hood when we as 22q vcfs Digeorge become independent and start living on our own. I only wish I had parents like her growing up. I felt the love she has for her son the continue support she offers him. I sure hope he knows how lucky he has it with her as a momma bear standing up for him.
The Missing Genetic Pieces is a book that I will be referring anyone of the parents I mentor to read. I get to help promote this amazing resource tool.
There is not a lot touched on Adults with 22q but that is because the community as a whole does not know or understand adults like myself with VCFS 22q and often have pre concieved ideas and I hope this book continues to help spread awareness for all people dealing with 22q not just for children and their families but everyone who knows or should know about VCFS 22q.
As an adult looking for answers this may not be the book for you. If you are an adult with a child who has VCFS 22q there is a lot of helpful tips and resources or if you’re a parent with out 22q after being told your child has been positive for 22q and you find out you are not positive for it this offers hope and guidance.
over all I rate this book a 5 out of 5.