A Year in the Making

Ryker and Mommy getting ready for the MRI.

"Welcome to the blog-o-sphere, Kasey!"

"Thank you, thank you very much!"

Self talk: does anyone else do this?

Seriously, though, this blog has been MORE than a year in the making (and, truth be told, I published it today because I included a shameless plug to this blog on our New Year's Card, and I HAD to have content on this site!).  You see, shortly after Ryker was born (shout out to Ryker James!) I was enjoying my maternity leave and carefully crafting a way to become a full-time stay-at-home-mama.  I came up with a brilliant plan to create a blog, appropriately named "Bring Home Mama," and my goal was to create a strategy to monetize a blog and produce other income streams so that any mom, if she wanted to, could choose to stay at home with her babes!  See?  Brilliant.  That was August of 2015.  In September of 2015, however, Adam and I started noticing Ryker's vision wasn't quite developing as it should be.  He was two months old, but his eyes would always wander and he would never focus.  Was this normal?  Was he blind? Would he ever be able to see?

One thing led to another, and, after a somewhat scary visit to the opthalmologist (the initial testing led us to believe that yes, Ryker was blind), we were given a diagnosis of Delayed Visual Maturation.  "He just needs a little time to develop," the doctor said.  Further testing was required, though, and on November 5, 2015 we found ourselves sitting at Blank Children's Hospital waiting for our 4 month old son to receive an MRI of the brain.  The MRI is an easy procedure, but at this age the MRI is conducted under general anesthesia, and watching your baby be put under anesthesia is NOT easy!

We received the results to the MRI later that week, and, while it showed some hypoplasia of the Cerebellar Vernis (meaning the center of the Cerebellum was underdeveloped), the doctor's weren't overly concerned.  "He just needs more time to develop," the doctors would say.

That answer just wasn't good enough for me.  Some call it a "spidy sense," others call it "mother's intuition," but I knew the doctors were missing something.  Fortunately, I had connected with another mom in a Facebook group for Delayed Visual Maturation (there is a Facebook group for everything, folks!), and she told me about a study at the University of Washington on hindbrain malformations.  I quickly sent Ryker's MRI to UW, and anxiously awaited the results.

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Hey, St. Louis Cardinals! Ryker's ready for you!

December 8, 2015 was a regular old Tuesday for me, but the events of that day will forever be marked in my memory.  I had a day full of meetings, but was able to  squeeze in a haircut late in the afternoon before heading off to one of our office holiday parties.  As I walked out of my hair appointment, I opened my phone to double-check my work emails when I saw a response from the University of Washington.  "Your son has Joubert Syndrome," they said.  Suddenly, I was overcome with emotions: FEAR, SADNESS, WORRY.  What does this mean? What is Joubert Syndrome? How will this impact Ryker?  I cried as I was driving home, and spent much of the next days consumed with worry about the uncertain future in store for our baby boy, and for our family.

As some of you may know, Ryker was destined to be a professional baseball player  (like his dad, grandpa, great-grandpa AND great-great grandpa), and, being that he was born on the 4th of July, he was also destined to be President of the United States of America.  How would Joubert Syndrome impact that?  How would it impact our plans for him?  The doctors said he may not be able to walk, he may not be able to talk, he may have intellectual disabilities, and he may suffer from kidney, liver, and retinal disease.  But, because Joubert Syndrome is so rare (less than 1,000 diagnosed), there are a lot of unknowns with the disease, so nothing they told us was definitive.  I was in shock, and I was grieving.  It was an emotional time.

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Needless to say, "Bring Home Mama" took a back seat in my life.  Ryker and Joubert Syndrome were my focus, and our daily life was consumed with therapy, doctor's appointments, and research.  LOTS of research.  It was a dark time, a sad time, and a lonely time.  As the months went on, I was hesitant to post things on social media -- I didn't want the world to see Ryker and categorize him as "special needs."  I didn't want other parents to see him and comment on his delayed development.  I didn't want to admit that we were struggling.  I wanted the world to treat Ryker as a "normal boy" and not define him by his disease.  I wanted to protect my boy.
 
As the days and weeks went on, however, Adam and I grew stronger together.  We were together on this journey, and we had our faith in Jesus Christ to help us in our times of struggle.  Through lots of prayer, multiple miracles, and the true joy of parenthood, a great peace came upon our family!  God was revealing himself to us every day in Ryker, and we soon realized that to succeed on our journey, we just needed Faith that "with God all things are possible," and Gratitude -- SO much GRATITUDE to God -- for entrusting us to be Ryker's parents.  

That brings me to where I am today: a new year, a new day, and FINALLY a brand new blog!  Thank you for taking your time to get to this point -- the first post was a LONG one, but I hope this can be the start to a great journey together.  I hope to share a bit of our daily lives with you, share our favorite things, and most importantly, connect with other parents facing uncertainties or struggles and let them know IT WILL BE OKAY!

STANDING for a picture in August of 2016! Take that JS!