A difficult diagnosis can be difficult to process.  There are many "what if" questions, and far too many "unknowns."  Some days, particularly early on, can be very dark and sad, and it can feel like you're on an unending rollercoaster ride!

I remember early on with Ryker, it seemed like every doctor's appointment we attended led to bad news, or further testing of some sort.  "For goodness sake!" I would think to myself, "Can't the boy catch a break?"  I just wanted someone, anyone, to tell me "it would be okay."

Enter: Dr. Stephen Gutu, Ryker's awesome neurologist at Blank Children's Hospital in Des Moines.  Our pediatrician (another amazing doctor) referred us to Dr. Gutu early on, and he and Ryker developed a special bond right away!  If you're familiar with Blank Children's Hospital or spend any time there, then you may see Dr. Gutu walking the halls in his famous pair of wooden clogs.  Yes, adult male sized wooden clogs.  Apparently the kids love them!  Now I digress, back to my story... 

Have you ever been stuck, mentally (i.e., writer's block), and all of a sudden you hear something, you see something, or something happens that clarifies everything for you and you're back on track?

That was me today.  I've been planning this blog post, but struggling with putting it together.  That is, until I listened to our pastor preach this morning at Berean Church about inertia. 

The law of inertia, perhaps better known as Newton's first law of motion, states, "An object at rest tends to stay at rest and an object in motion tends to stay in motion..."  Now, I will be the first to admit that I am not physicist, nor am I anywhere close to an expert in physics, but the idea that an object in motion tends to stay in motion really hit me today -- not in the terms Newton probably intended, but rather in terms of parenthood.

When Ryker was born, our lives shifted and changed in an incredible way.  We stayed up late watching him sleep (like all new parents, making sure he was breathing!), rocked him when he cried, fed him when he was hungry, and stared at him with a happy, loving, heart-melting stare that all parents can understand.  Ryker was the center of our lives, and becoming parents was the greatest thing Adam and I had ever experienced.  Our lives were FULL of joy, and I LOVED my new title as "mama."

When Ryker was about two months old, though, we started noticing some issues with his development (see my first post for more details).  Suddenly, I wasn't  just "mama" anymore, I was a medical researcher.  When he was diagnosed with torticollis (more to come on that one!), I became a physical therapist.  When he was diagnosed with Joubert Syndrome, labeled a "rare genetic disease," I became a geneticist, a neurologist, a physiatrist, a vision therapist, an occupational therapist, a speech and language pathologist, and more than anything, an advocate for our son.  Our lives became inundated with countless doctor's appointments, medical tests, and therapy sessions, and that was just outside of the home!  Inside the home, the therapy sessions continued.  Every diaper change brought a routine of stretches, cuddling in the evening meant holding him a certain way to stretch his neck, play time meant working on visual tracking and reaching (while also improving neck strength), nap time meant monitoring Ryker while he napped on his tummy (head facing left) so he could stretch while he slept.  All the while, I simultaneously researched for doctors, courses of treatment, and anything possibly related to Joubert Syndrome.  No matter what time it was, there was always something to do -- life was GO, GO, GO...hence, the discussion on inertia.

In my role as a parent, I was a body in motion, and there was no stopping me.  But that mindset, the "always on the go" mentality, isn't healthy.  A healthy person requires rest.  Even God, when he created the world, took the seventh day to rest (see Genesis 2).  But how could I be the best mom for Ryker, and rest at the same time?  There was no time to rest -- if Ryker was awake, we were working on exercises.  If he wasn't working on his exercises, I felt guilty.  If Ryker had a doctor's appointment or a therapy session, I was there.  If I couldn't make it, I felt incredibly guilty.  I soon realized that ALL of the other titles I had taken on in my role as a parent had taken over my most important title: MOM.  When was the last time Ryker and I just snuggled and played WITHOUT Joubert Syndrome, torticollis, vision, or any other medical anomaly in mind?  When was the last time I truly rested?

Slowly but surely, I learned it was okay to just hold Ryker and cuddle with him.  It was okay to let him just lay on his back, kicking and playing and having a ball!  It was OKAY if I couldn't make it to every single appointment.  Not only were those things okay, but they were healthy!  You see, life requires balance, and sometimes -- like the wireless router or the cable box -- you need to unplug so you can reset and get back to work again.

So, to Ryker, I'm sorry that for the first year of your life you never got a break, and I thank you for always being so happy (despite the go, go, go schedule).  While we're still on the go quite often, and you still don't get many breaks from your therapy, I have learned to lighten up a bit!

To all of you other moms, dads, parents, grandparents, aunts, uncles, cousins -- anyone who may find themselves in a caregiver role -- if you're finding yourself in the same spot I was in, I urge you to try to set aside some time, even just a few minutes, to rest, reset, and remember the reason you're in this role.  If you're a mom, be a mom FIRST.  If you're a dad, be a dad FIRST!  You can still be the researcher, the doctor, the nurse and the advocate -- those are critical AND necessary roles -- but don't let those roles overshadow the original role you were in: the role before all of the others had relevance, the role for which you were called.

For me, that role is Mama, and I'll gladly take that back as number one. 

"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.