About Us
Hello, and welcome to a blog about our family navigating the rare syndrome world!
My name is Vanessa. I have seven awesome children, but only 5 came out of me. The five I helped create are Jace, Kailanie, Lakoda, Makai and Niko.
Jace is my overly dramatic kid. Kailanie is my feisty unicorn with a rare syndrome, Lateral Meningocele Syndrome, and in treatment for Acute Lymphoblastic Leukemia. Lakoda is my silly to Kailanie’s serious and Jace’s dramatic. Makai and Niko are my very busy twinnies . The oldest two kids are great helpers when they are with us.
The father of these 7 awesome kids, Jon, is someone I couldn’t live without. Props to him for being a stay-at-home Dad.
I work as a caregiver, but when I’m not at work my titles are endless. My favorite role to play is Mom.
Being a special needs mom adds more titles than a “typical” mom or non-special needs mom, whatever you want to call it. A “typical” mom, if there is such a thing, has the usual referee, housekeeper, chauffeur, plumber, etc. titles. I happen to have a whole extended list of titles, such as physical therapist, speech therapist, feeding specialist, nurse, triage nurse, ect…..of course I am not “technically” trained, but I am sure you get the point.
In this blog, I intend to share our experiences as we navigate this unknown journey with Lateral Meningocele Syndrome (LMS) and Acute Lymphoblastic Leukemia (ALL).
I hope to write about the random adventures we go on, updates on Kailanie, funny moments, and other topics relevant to our journey. Other topics may include pregnancy, natural living, CBD and more.
We hope you follow along as we also navigate through this special unknown journey.
hello, very nice blog post. I like to read. I hope you write more articles. Thank you.