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. 

As a parent, particularly a NEW parent, you're bombarded every single day by apps, emails, charts, and people checking in on how your child is developing.

The charts say:

• By 2 months your child should stare longingly into your eyes.
• By 4 months your child should be rolling over.
• By 6 months your child should be sitting independently.
• By 9 months your child should be crawling and standing.
• By 1 year your child should be walking and talking.

​The people say:

• "Is he smiling yet?"
• "I bet he's crawling ALL over now!"
• "I bet he's getting into everything."
• "Time to childproof!"
• "Is he walking all over now?"
• "Is he talking?"

All of the information is well-meaning (and important). All of the people are well-meaning too!  But news flash, folks, children develop at different paces, and when it comes to my little guy, well, HE DOESN'T COMPARE!

Now don't get me wrong, I understand the medical importance of "milestones" and particularly "meeting milestones," but this day and age, when everyone seeks perfection, some of those milestone markers can set up new parents for endless worry!  PLUS, in our completely e-connected world of social media, it's hard to not look at other kids and say, "hey, they're talking, should my child be talking?" Or, "I just saw a 9-month old walking, my child isn't even crawling yet, is something wrong with my child?"  Facebook can suck you in completely, and I'm not going to lie, I definitely got sucked into the comparison game.

Not long after we got Ryker's diagnosis, facing an uncertain future for our baby boy, I got sucked into Facebook and started looking at all of my friends who had babies born at about the same time as Ryker.  I would see their babies sitting, I would see them rolling over, I would see them start to crawl.  I would see my friends write posts saying, "Oh, this little one is crawling all over now -- she's getting into everything! Can't she go back to when she just laid there, I can't handle three mobile children!"  I would cry, I would worry for Ryker, and then I would get angry.  

"Don't these people realize how lucky they are?" I would think to myself.  "Ryker is practicing holding his head up right now and you're complaining about your child crawling!"

Some well-meaning friends, upon finding out about Ryker's gross motor delays, would even say, "Oh, be thankful he's not mobile yet, when he's mobile he will just get into everything!"    Perhaps they didn't realize that we were praying for Ryker to become mobile JUST so he could get into everything!  We longed to baby-proof our house!

Soon, though, I realized I was not doing myself, my family, and particularly my son, any good by comparing his development to others and wallowing in self-pity.  My friends that were showcasing their child's development were just PROUD of their child -- like any good parent would be!  They weren't saying "my kid is better than yours."  My friends that were overwhelmed by multiple kids moving around and getting into everything were experiencing the wonderful joy (and stress!) called parenthood, and THAT WAS OK!

 Yes, Ryker had (and still has) major gross motor delays.  BUT when he accomplishes a task -- even one as seemingly simple as holding up his head -- guess what?  We celebrate!!!  And that celebration is OH SO SWEET!!!  Why?  Because we see how hard Ryker works to accomplish EVERY SINGLE THING he does, and the joy we feel in seeing that hard work payoff is truly indescribable.

So, parents, when you find yourself researching developmental milestones, creeping on your friend's kids on Facebook or Instagram, and playing the endless comparison game, here is my advice:  STOP.  Just stop.  Instead, look at your child, be thankful for the amazing gift you have been given, and celebrate every moment.  Your child will develop in his or her own time -- God's time -- and that timing will be absolutely PERFECT....perfect beyond compare. 

"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.