On this day in history, our family celebrated a Christmas miracle!

December 22, 2017 was the last day of Ryker's intensive physical therapy program at Tender Ones Therapy in Dacula, Georgia, a suburb of Atlanta.  It was Ryker's "walking school," and for two weeks he worked for nearly four hours a day -- one foot in front of the other -- as we prayed for his first steps to come.

Adam captured our family's feelings well: "A few small steps for a little boy, a giant leap for our family." 

I'll never forget driving away from Tender Ones that day, as we headed back to pack up our condo and begin our long drive from Georgia to Iowa so we could make it home for Christmas.  Adam and I looked at each other in the car, and we both started to cry.  The tears were tears of joy and tears of gratitude to our Lord -- we had witnessed a miracle!

As we enter into this Christmas season, we are blessed to celebrate the greatest miracle of all.  May we all remember the miraculous coming of our Lord, and may we all praise Him for the miracles He continues to share every single day.

Merry Christmas! ​

To many people, December 8th may be just another day in the busy holiday season.  To me, and my family, however, December 8th will forever be  a day that changed our lives.

December 8th is Diagnosis Day.

I remember it like it was yesterday.  It was a Tuesday afternoon, and I had just gotten my hair cut.  After leaving the salon, I hopped back into my car and, per usual, quickly checked my email to see if I needed to respond to any urgent work matters.  There, in my inbox, was a message from the Hindbrain Malformation Research Program at the University of Washington,  You see, just days before I had sent them all of Ryker's MRI images for a second opinion, since our first opinion showed abnormalities of the brain, but the doctors ultimately weren't concerned and rather said let's just "wait and see."  My stomach sank, and the world around me paused.  Nervously, I opened the email, and there I read the words "Ryker has Joubert Syndrome."

I cried.

Then I cried some more.

I didn't know how to process this information, so I decided at that point I would drive straight to Ryker, who, at that time, was being watched by my mom.

I wiped away my tears, put on a happy face, and approached the door to my parent's house.  I thought I would be able to pretend that everything was okay, but as soon as my mom opened the door, she knew.  I shared the diagnosis, and together we cried.  I wish I could say I was brave, and bold, and knew exactly what to do in that moment, but I was none of those things and I had no idea what to do.

Moments later, I sat with Ryker in my lap and I called the head researcher at the University of Washington to talk through what a diagnosis of Joubert Syndrome meant (I even had to ask how to pronounce "Joubert"!).  It was overwhelming and it was scary.  I started gathering as much information as possible, and planning our next steps.  After talking with the team in Washington, I called our neurologist in Des Moines and shared our diagnosis with him, and scheduled our next neurology appointment.  Within an hour, I had plans for our next steps, but I was numb.

Later that evening, Adam and I talked, and I realized that the two of us were processing the diagnosis a bit differently.  While I was sad and trying to research next steps, Adam was angry.  I was the one who had researched the University of Washington and I knew their expertise, to Adam they were outsiders who didn't know our son.  We sat in silence, both holding our own fears for the future of our son, and we came together in prayer.  We prayed for healing, we prayed for answers, and we prayed that the Lord's will would be done.

Fast forward 4 years, and December 8th is a day of celebration.

Today we celebrate Ryker and all he has accomplished.  The fears I had within me on December 8, 2015 are gone.  My faith is stronger, our family is stronger.  

Are there still unknowns?  Yes.

Do I have continued concerns for Ryker's health? Yes.

Have I seen Ryker disprove everything we were told on December 8th? Yes.

I wish I could go back in time and tell past Kasey "everything will be okay."  I wish I could say "HAVE FAITH!"  Or perhaps even, "You have faith, now BELIEVE it to be TRUE!"  For now, I hope this message reaches someone who may find himself or herself in the same position I was in four years ago.  You may not have the answers now, but I can assure you, everything will be okay.  It won't always be easy, nothing ever is, but if you allow yourself to see the good in different situations and if you put your faith in God and actually TRUST him, then you will find yourself on an unbelievable, amazing  journey. 

The journey is FOR you.  The journey isn't happening to you.  Enjoy it, grow from it, use it. 

As the season of Thanksgiving is upon us (or "Thanksmas," since many folks, including myself, have already decked the halls for Christmas!), I just wanted to share a little of my heart, and encourage you all to have an attitude of gratitude.

Gratitude is a thankful appreciation for what an individual receives, whether tangible or intangible.  In other words, with gratitude, people acknowledge the goodness in their lives.  Scientific studies abound illustrating the positive impact gratitude has in the lives of people, in the home, and in the workplace.  For me, gratitude -- for my husband, my home, my job, and my two awesome little boys -- has been life changing.

Four years ago, at this time, I was coming to terms with the MRI results for our four month old son that showed an abnormality in his brain, particularly in his cerebellum.  I spent hours researching cerebellar disorders, and with every Google search I had more fear and anxiety over my son's future than I care to admit.  I wish I could say that at that time I was grateful for everything we were experiencing, but that would be a lie.  I was angry, frustrated, and scared.  I shed many tears.  But soon, I came to the realization that my fear and anxiety was taking away from precious moments with my sweet baby boy.  I decided to focus on everything I was grateful for, and guess what?  I discovered I had SO much to be thankful for!

Not only was I fortunate enough to have the basics covered: food, clean water, shelter over my head, but I also had access to first class medical care.  In addition, doors were opening for Ryker left and right, which helped our family get answers to our questions FAST.  The MRI that was going to take at least 30 days to complete due to scheduling issues?  He was seen in 4 days.  Facebook, the world's largest social network that I can complain about for 1,000 different reasons?  It connected me to other parents across the globe experiencing similar issues with their children, leading to answers for our son.  Finally, we were (and still are) surrounded by amazing family and friends who fill our lives with support, love, and most importantly, prayer.  A prayer-filled support system is perhaps the piece I have been most grateful for on this journey.  Prayers work.

I know there are times when life seems overwhelmingly difficult, and you may not think you have much to be grateful for, but I promise, if you seek gratitude in your life you will find it.  For gratitude takes what we have and turns it into enough.  And that's good enough for me!

Dear Maverick,

Today you are TWO!  I feel like I blinked and suddenly you went from my newborn baby boy to a toddler -- no, a little boy! --  running around like a wild man wherever you go!

I am SO proud of you, Maverick.  You are happy, smart, spirited, and FULL of joy.  You also have the biggest heart, and care so much for others.  It isn't unusual to hear you praying during the day, and your prayers are simply the best: "Amen, Jesus. Amen, Jesus. Amen, Jesus!" 

Daddy and I were recently talking about your love language, and I think your love language is found in quality time.  You like to show off, always making sure we're watching you do your tricks, and you simply like to spend time with others.  

You started preschool this week, and you entered that school with a confidence well beyond your two years!  You can hang with the big kids and you care for the "little kids" (your words, ha!).  You are a boy who finds a friend wherever you go.

At two, here are some of your favorite things.

1.  Sports.  You love football, basketball, and golf, but BASEBALL is definitely your FAVORITE.  Dude, you are one heck of an athlete!  You've got a great baseball swing and you love to practice hitting home runs!

2.  Baseball Guys.  Your daddy recently opened his mint condition collector's edition "Starting Lineup" baseball guys -- according to your daddy, they're worth millions -- but he loves you and Ryker so much he let you open them!  You picked Lou Gehrig, a fitting choice!

3.  Animals.  You love ALL the animals we see, and your bed is full of stuffed animals -- each one very special to you.  You have a teddy bear that you've had since you were a baby, and you like to make sure that bear is close to you every night  Some day I think you would like a puppy, but we'll have to work on your daddy for that one!

4.  Working.  Mav-man, you are a boy who loves hard work.  If you and Ryker are playing and Mommy or Daddy starts working on a project, you like to jump right in to the project!  This is why you got a tool set for your birthday...I know you've been wanting your own hammer for a while!

5.  Ryker.  Out of all of your favorites, Ryker is definitely on the top of your list.  You two boys have the sweetest friendship and love for one another, and it shines on a daily basis.  You are an AWESOME brother for Ryker, and have supported him at his appointments and therapy sessions since we brought you home from the hospital.  When you're with Ryker, you are always cheering him on with a loud, "YAY RYKER!"  Shouted in the sweetest voice I've ever heard.  You help make Ryker stronger!

Maverick, you make me SO proud and I am so happy God chose me to be your mom.  Thank you for filling these past two years with more love than I could ever imagine!

Happy birthday, Mav-Man!

Love,

Mama

Dear Ryker,

Today you are FOUR!  I simply cannot believe it.  It feels like just yesterday daddy and I were preparing to go to the hospital to meet you, our first baby, our first boy!

You have grown so much in this past year!  You finished your first year of preschool at the BIG school, and you played on your first baseball team (go Cardinals!).  You proved to us all that there is no challenge too big for you to overcome.

You are STRONG, SMART, and HAPPY, and those are traits you have carried since day one!

At four, these are some of your favorite things:

1. Lightning McQueen.  I'm pretty sure Lightning McQueen has been your favorite since you first watched Cars.  You have more Lighting McQueens then I knew existed -- Blue Lightning, Jump Lightning, Lightning McQueen Mud, Dinoco Lightning -- the list goes on, and you love each of them SO much!
2. Baseball.  A favorite of yours since you were born (no surprise there!).  You are particularly fond of the movie The Natural and always try to hit the ball "high in the sky" so you can break the lights, just like Robert Redford!
3. Cowboys.  This is a new favorite, thanks to Woody and Jessie from Toy Story, but it suits you since you started Horseback Riding this year and have come to LOVE riding your horse Star!  You like to tell Star "Yee-Haw!" to get her riding, and you're very proud of your cowboy status!
4. Maverick.  Last but not least, your brother Maverick remains your most favorite of all.  You take very good care of him, help to protect him, help to comfort him when he is sad, and are patient with him as he learns what NOT to do (like hit...).  The bond between you two brothers is STRONG, and I love seeing your friendship grow.

Ryker, you are surrounded by people who love you, care for you, and pray for you every single day.  You are an incredible miracle and you have proved to us all that God STILL works wonders!

May God bless you and keep you...happy birthday to YOU!

Love,

​Mom

February 28th is World Rare Disease Day, and I would like to invite ALL of you to celebrate this special day with us!

World Rare Disease Day is a day our family wasn't aware of until Ryker was diagnosed with Joubert Syndrome in December 2015.  A rare disease is classified as one that affects fewer than 200,000 people in the United States.  Joubert Syndrome affects fewer than 1,000 people worldwide.  Ryker is among the rarest of rare!

To help celebrate World Rare Disease Day, and to show support to Ryker, and all of the patients and families affected by a rare disease, we invite you to WEAR JEANS for RARE GENES on February 28th!  Share your support for Ryker on social media with a picture of you and your friends in your jeans with the hashtag #RYKERSTRONG !

If you would like to further show support for Ryker, please consider a donation to the Joubert Syndrome Foundation, a parent-led organization who has helped our family and many like us tremendously on our journey with JS.  Donations can be made here and you can make a donation in Ryker's name.

We look forward to celebrating with you!

Chris Norton, a native of Bondurant, Iowa (just about 10 minutes from our home base in Pleasant Hill, Iowa), was a freshman football player at Luther College whose life changed in an instant when he mistimed a tackle, collided with the ball carrier's legs, and lost all feeling from the neck down.  Chris was told he had a 3% chance of ever regaining movement from the neck down.  Yet despite that fact, Chris persevered.

On an excerpt from his Foundation website, Chris states: "I could have let it define me.  But our lives aren't shaped by circumstances.  They're shaped by us.  Perseverance isn't about the physical act of standing: it's about attitude, and the ability to shape yourself in the face of adversity."

Chris and his family, through the Chris Norton Foundation, have dedicated themselves to "helping people with spinal cord and neuromuscular disabilities live their best lives."

Enter: Ryker.

If you've been following this blog, you know that when Ryker was diagnosed with Joubert Syndrome as an infant, the doctors told us not to expect him to ever crawl, walk, or talk.  But Ryker, like Chris, has persevered,

Through hard work, determination, hours of therapy, a handful of tears, and LOTS of laughter, Ryker is walking -- nearly running! -- everywhere he goes.

Our road to walking has been a tough one, and it's ongoing, but Ryker DOES NOT GIVE UP.  Amongst the multiple therapies we have encountered, one of the most beneficial to Ryker is working out in the Universal Exercise Unit at ChildServe in Johnston, Iowa.

The Universal Exercise Unit, or the "cage" as we call it, allows patients to experience standing while allowing freedom of movement and facilitating balance.  For Ryker, when he exercised in the cage he had a new sense of independence and, as a result, he was able to gain confidence with his standing which contributed greatly to his ultimate ability to walk.

How does this relate to Chris Norton?

I'm glad you asked.

In his own therapy sessions, Chris Norton utilized the UEU, and because it made such an impact on Chris' progress, the Chris Norton Foundation donated the funds to ChildServe to purchase a UEU for their facility, and our family will forever be grateful for that incredible gift.

We told Duncan our story about Ryker and how "We Believe" was his favorite song.  Duncan asked to hold Ryker, played with him, and we all got a photo together.  It was AMAZING.  To top it off, that night they finished their performance with none other than "We Believe."

We relished in that awesome moment.

What we didn't realize, however, was how critically important that song, and its meaning, would become to our family.

Just two months later Ryker would be diagnosed with Joubert Syndrome.

He would endure countless doctors' appointments, poking, prodding, therapy sessions, and more, and we had "We Believe" on repeat everywhere we went.  It truly calmed him through the most difficult appointments.

And do you know what?  It calmed me too.

It reminded me that despite the unknowns, despite the fear, despite the heartache -- WE BELIEVE.

We Believe because we KNOW God is real.  We feel His presence every day, and, if you've read any of my posts before, you know He's worked miracles in Ryker's life.

Is the journey still hard?  You bet.

Is it scary?  No doubt about it.

Am I afraid?  Absolutely not.

Why?  Because WE BELIEVE.

So let me bring you back to the beginning of this post and Ryker's tantrum on the way to school...

I hit my radio and turned on "We Believe," and instantly Ryker calmed down.  Instantly he gave me a smile, and a sweet peace come upon him.

We pulled up to school, I gave him a hug and a kiss, and I said, "Are you excited for school, buddy?"  He grinned at me and said, "Yeah!" Then headed off hand-in-hand with his teacher ready to conquer the day.

He believes.

Dear Maverick,

In the blink of an eye a year has flown by and today you are ONE!

One year ago I was heading to work, and I decided to stop by the doctor's office on my way to the office because I thought I might be in labor.  You weren't due for another two weeks, but I had a feeling you were excited to enter the world!  Sure enough, our awesome doctor said "Let's go have a baby!" And off to the hospital we went!  Just a few hours later you were born, and daddy's eyes lit up when he announced "It's a boy! Another boy! We have two boys!!"

We named you Maverick Kai; Maverick, which means independent, and Kai, which means ocean -- an homage to your Great Mimi and Great Granddaddy, both SCUBA instructors, who introduced me to a love of everything under the sea!  That's why for your first birthday we had a shark party!

They say a picture is worth a thousand words.  To me, this picture is everything.

You see, our family was fortunate enough to travel to Grand Cayman for an amazing family vacation.  We woke up every morning and headed straight to the beach where Ryker played all day in the waves, Maverick ate way too much sand, and we all soaked in the beauty of God's creation.

One afternoon, as the sun began it's trek towards the horizon, Ryker and I sat together on the beach, looked for shark fins, and talked about the amazing animals under the sea (he is particularly fond of eels, stingrays, and, my favorite, spotted drums).  Adam saw this moment and snapped a quick picture of us, not realizing at the time the miracle he captured: two sets of footprints in the sand.

That's right, there are two sets of footprints in that photo.

That means two people WALKED to the edge of the sea.

That means Ryker WALKED to the edge of the sea.

He is a miracle, and those little footprints tell his story.

A story of a little boy who was told he may never walk, but he knew God had bigger plans for him.  He worked hard, he persevered, he prayed, and he was determined to take steps.

Ryker never gave up.

Some people quit because they focus on how far they have to go, without realizing how far they have come.

Those footprints, though small, are a BIG reminder to us of how far Ryker has come.  They're a big reminder to us of how far anyone can go!

Never give up.

The world is waiting for you to leave your mark.