The last time I posted (way too long ago!), we were celebrating 1 minute and 13 seconds of you walking independently in the pool.  I cried tears of joy in that moment!  Today, however, just a few months later, you're walking EVERYWHERE you go!  WALKING.  A skill many take for granted, but something we know you have worked hard for since the moment you were born.  I thank God for every single step you take -- I thank Him for the amazing brain He created, I thank Him for your determined spirit, and I thank Him for always reminding us that He is right there by our side.

When you fall, you get back up, and quickly move on to the next steps!

You are brave, strong, and simply amazing.

You are also silly.  So silly!  Your laugh is deep and joyful, and truly one of the greatest sounds I have ever heard!

At three years old, here are your favorite things:

1. Baseball.  This has been a favorite since the very first time you saw a baseball! 
2. Cars.  You will play with cars all day long if you could, and you are an excellent bedtime negotiator, often convincing me that you need to bring 5 cars to bed with you (rather than the 2 I initially offered).  As an attorney, this skillset makes me proud!
3. Sharks.  You take after your mom on this one.
4. Dinosaurs.  You have an awesome ROAR.
5. Maverick.  Your most favorite of all!  You WALK into Maverick's room every morning to greet him, hug him, kiss him, and wrestle him!  He is your favorite person in the world, and you are his favorite person in the world.  You are the BEST big brother.

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Ryker, to say I am incredibly proud of you is an understatement.  There are truly no words that can describe how I feel for you and all that you have accomplished in three years. I can't WAIT to see what you will accomplish in this next year!

Keep up the good work, buddy.  You are the BEST.

Happy birthday to my favorite three year old in the WHOLE world!

Love,

Mama

Do you believe in miracles?

I do.

Today, I witnessed a miracle that lasted 1 minute and 13 seconds.  1:13.

We were practicing swimming and some aquatic therapy today (thank you, Mimi, for your help!), and then it happened.  With determination, confidence, a bit of fear, and a LOT of courage, RYKER WALKED.  Not just a few steps...but so many steps that I lost count! 

He walked for 1 minute and 13 seconds!

When Ryker was diagnosed with Joubert Syndrome, we were told he would probably never walk.  But I know my God is bigger than ANY diagnosis.  Bigger than ANY "expected outcome."  I know my God works miracles.  I believe in miracles.  

Albert Einstein once famously said, "There are only two ways to live your life.  One as though nothing is a miracle.  The other as though everything is a miracle."  Folks, everything is a miracle.

I know Ryker is on the way to walking -- no, RUNNING -- independently.  It's not a matter of years or months...it's a matter of days.  He is SO proud of himself, and we are SO proud of him too.

I hope our miracle brings you joy today, and I hope you can recognize the miracles that are surrounding you every single day.

Before I begin today's post, I need to apologize to all of my friends, family, and faithful followers, who have kindly reached out asking if they've missed a post, or if they need to re-subscribe to my blog.  No, you have not missed a post, and no you do not need to re-subscribe!  This thing called life sometimes happens -- crazy, right? -- and I found myself in a place saying, "I need to write a post today," but instead of writing I came up with a million excuses (kids, work, cleaning, laundry, and so on...) and I found myself saying "I don't have time for this today."  But do you want to know something?  It's not about HAVING time.  It's about MAKING time. 

How often do we fail to make time for the endeavors that are most important to us? And by "us" I mean our individual selves.  How often do we fail to put our own needs first?  If you have ever been on an airplane, you've heard the flight attendant say "put on your own oxygen mask first before assisting others."  Yet every single day so many of us tend to others first rather than giving ourselves the oxygen we need to survive.

I recently joined a book club with some of my co-workers and peers, and the first book we're reading is titled,  The Miracle Morning, by Hal Elrod.  In my opinion, the book doesn't contain any groundbreaking principles -- much of it is common sense -- but the author has an amazing testimony (he was dead for 6 minutes!), and I've found myself challenged to become the morning person I have never been.  By waking up earlier, perhaps I can dedicate the time I need for my own spiritual and physical health, both of which will make me a better wife, mom, employee, community member, volunteer, and overall person.  I mean, as a MOM I make sure my boys eat healthy, they sleep well, they  read their Bible (or have it read to them, at their young age), and they exercise (among other things).  I make Ryker walk on the treadmill for at least 15 minutes a day (he often chooses to walk for as long as 25 minutes!), and I make Maverick do tummy time throughout the day because it's so good for both of them to exercise, but me -- eh, I can exercise TOMORROW (yeah right).  Can anyone else relate?  Why do I put my own health last?  I'd like to live a very long and healthy life -- don't get me wrong, I can't wait to see Heaven -- BUT, I'm not quite ready to knock on the door of the pearly gates just yet.

SO I guess this post today is a challenge.  A challenge for myself, mostly, but a challenge for any of you out there who find yourself putting everyone else in your lives FIRST, while your own individual self slips away.  If you constantly say, "I don't have time for that," wake up early with me and make time.  I have a feeling all of our friends, family, and loved ones will thank us for the person we will become when we finally make ourselves a priority.  If you want someone to help hold you accountable during this time, please don't hesitate to reach out to me -- I'd gladly be your accountability partner!  You can contact me through the blog, comment on this post, or email me at [email protected]. 

The time for change is upon us, and it starts with the alarm clock BRIGHT AND EARLY in the morning!  Wish me luck...

P.S. - I wanted to share a picture of how I accomplish my tasks during the weekend, and it looks like this:

​Isn't that picturesque and wonderful?  All three boys peacefully sleeping at once.

Here is the reality:  Maverick is now sitting with me, after sleeping for 5 minute chunks of time, each time waking up screaming like a falcon after launching his pacifier 10 feet across the room (I'm actually quite impressed with that skill), Ryker is currently sitting up in his bed and playing with cars, and Adam...well he was up hours before the rest of us today, as he is every morning.  He is the epitome of one who "makes time" during his day, and he sets an example I strive to achieve.  He wakes up at least two hours before all of us every single day to spend time in prayer, go to the gym, help around the house, and accomplish whatever else he needs to do before the day really begins.  He does all of this so that we have more time together as a family, and I am very thankful for that!  If I can accomplish half of the things Adam does in the mornings, then I know I am on the right track.  

Wow.  What a week!

If you follow my Instagram (@kaseysteen), you already know how much progress Ryker has made in the span of a week!  He works HARD for 3 hours straight, with just a 10-15 minute snack break to reenergize.

Here is a quick recap of our week...

December 11, 2017 - Day One:

Ryker suited up in the Therasuit on day three.  The Therasuit is a wearable orthotic comprised of multiple bungee cords that can add resistance to certain areas of Ryker's body, in order to help align his body into proper position for walking and provide input/stimulation through his muscles.  It works out multiple muscles in his body and is very strenuous, but makes a big difference! 

Also on day three, Ryker took NINE independent steps.  NINE STEPS!!!  I failed to get his nine steps on video, but I did capture this:

After Ryker (and Maverick) worked so hard in therapy, we took a mid-week break and headed out to the magical lights at Lake Lanier Islands where the boys got to meet Santa.  Ryker showed Maverick what Santa was all about, and asked Santa for a bus for both of them.

In case you wondered what Maverick is up to during Ryker's therapy, he is some of the best motivation for Ryker walking (and probably the best sport ever).  Here is Maverick in action:

Friday morning my heart was FULL of joy as I walked, hand in hand, with Ryker on our way to therapy.  This was a first for us -- walking all the way down a long hallway like this -- and it was just awesome.  Ryker's hard work is definitely paying off!

Ryker is gaining confidence, gaining balance, and making giant headways at Tender Ones Therapy Walking School!  We are so proud of his strength, determination and perseverance through this therapy!

As many of you know, we have had the awesome opportunity to travel to Dacula, Georgia (just outside of Atlanta) for two weeks of a very intensive physical therapy program for Ryker, aptly named "walking school."  We are believing Ryker will WALK in the next two weeks -- he is READY! -- but we know that no matter what the outcome is, our time here in Georgia will be well spent, and it is an incredible blessing for Ryker and our family.

Since we live in Des Moines, Iowa, I've had many ask, "why Georgia?"

Our trip down to Georgia actually began two years ago, when Ryker was first diagnosed with Joubert Syndrome.  You see, immediately after Ryker's diagnosis, I joined a Facebook group for Joubert Syndrome parents, and in these parents (and grandparents and family members), I found the best resource for information, love, and support from people who "get it."

Through social media, we formed a deep friendship with these other "JS Families."  In July, we were fortunate to travel to Phoenix, Arizona for the Joubert Syndrome and Related Disorders Conference, where our "virtual friendship" became a  reality and we could finally meet so many of our Facebook friends in person.

Among the folks we were excited to finally meet in person were our sweet little friend Karison, and her awesome mom, Amanda.  Karison is almost one year older than Ryker, and she has a personality that will light up a room (and knows how to work it for the camera!).  Amanda is a great advocate in our JS world, and is always quick to help other families, share advice, and spread awareness about this rare condition.  During the month of October, which is Joubert Syndrome Awareness Month,  Amanda connected with many of our JS families and shared 76 individual stories about Joubert Syndrome!  76 stories!!  It was amazing.

I am a HUGE fan of Amazon Prime...it's one of my favorite things.  I told Adam when we first subscribed to Amazon Prime that it would save us TIME and MONEY.  Now I'm positive we have saved time, money...not so much.  That being said, with my Amazon Prime subscription I have access to this awesome feature called "Prime Photos" which stores all of our family photos FO' FREE (well, with my subscription...), and every day I love looking at my Prime Photos app and seeing what photos come up from this same day in years past.

When I woke up this morning (at 4:15, thanks to Maverick and Daylight Savings Time!), I was hit with these pictures:

I was flooded with emotion after seeing these pictures, because on this day in our family history, November 5, 2015, Ryker had his first MRI.  These pictures captured me and Ryker, a new mom and a four month old boy, right at the beginning of a long, stressful, scary, joyful, and truly AWESOME road.

At the time of Ryker's MRI, I had no idea what to expect; I was scared for my baby and nervous for what the MRI may show.  I cried when they gave Ryker his IV, I cried when they started the anesthesia, and I REALLY cried when they wheeled him away.  Any parents who have been in a similar situation with their baby (or child of any age) can probably understand the feelings I had.  So many of these feelings can be tied to fear, particularly the fear of the unknown.

It would be almost exactly a month after this date, December 8, 2015, when our "unknown" became our "known": Joubert Syndrome.  Shock, grief, anger, and yes, more fear, come with a diagnosis like this, but after navigating this road for two years now (with so much more ahead), I can tell you what else comes with this diagnosis:

• Incredible JOY
• Happiness
• Indescribable LOVE
• Awesome Friendships
• Knowledge
• Power
• Determination
• Faith
• Gratitude
• STRENGTH

I wish I could go back in time and talk to Kasey (me) on November 5, 2015.  I wish I could give her a hug and assure her that everything would be okay.  I wish I could give her a glimpse of all of the great things to come.  I wish I could show her all of the truly awesome things her four month old was going to accomplish, and all of the wonderful people he would touch in his life.  I wish, I wish, I wish...

...but to go back in time and comfort the past me and show me the road ahead would forever change my story and who I am today.  Because you see, the hardest times often lead to the greatest times in life.  As Jimmy Dugan said in A League of Their Own, "the hard is what makes it great!"

I am so thankful for this road we are on, for the people in our lives, and for the people we are today.  I am reminded that while the beginning of the road may be difficult -- and you'll certainly hit bumps along the way --  there will be so much GOOD to come. 

​You just gotta have faith.

When I heard those words, I cried.  It was truly difficult to process.  Adam was standing with me as I received the MRI results, and he immediately said, "It will be okay!  Look at Ryker and how awesome he is -- we can do this."  He was right, and I will forever be grateful for Adam's love and faith for our family in that moment -- he calmed me, and he immediately set our focus back on God and His plans, and as always, we put our faith in the Lord.  We prayed over our boys, and were preparing ourselves to raise two awesome little dudes with Joubert Syndrome.

We immediately sent Maverick's MRI results to our expert team in Seattle to review the images of the brain and confirm the diagnosis of Joubert Syndrome.  The MRI results were received in Seattle by Tuesday, September 12th, and -- despite the packed schedule of Dr. Doherty -- he took time (as he always does) to immediately read the images.  At 5:30 PM we heard the following:

"Maverick does not have any concerning features for Joubert Syndrome and he does not have cerebellar vermis hypoplasia."  In other words, our doctor in Seattle, the LEADING EXPERT in hindbrain malformations and Joubert Syndrome, said Maverick's MRI is healthy!  I still do not understand how the doctor in Des Moines could note the the EXACT same finding in Maverick's MRI as was in Ryker's MRI, but the fact that our Maverick's MRI is healthy (after the initial report) is truly miraculous.

If you have ever questioned God's presence, or his ability to answer prayers, I hope this is proof for you that God is always working and answering ALL prayers -- known and unknown.  

In Ryker, he answered an unknown prayer for us which has given us the opportunity to raise an awesome little boy with Joubert Syndrome and help families across the world dealing with a difficult diagnosis in their child.  Our neurologist here in Des Moines has even started reading MRIs differently, and just a few weeks ago he called us to meet a local family whose 13 month old was just diagnosed with Joubert Syndrome.  RYKER IS CHANGING THE WORLD!  In Maverick, God answered our prayer for a healthy MRI, and He created an awesome little brother for Ryker.  I have no doubt that Ryker and Maverick will grow up as best buddies, taking care of each other and always having one another's backs.

God answers prayers.  God works miracles.  God is GOOD. 

We are all so proud to announce the arrival of BABY BOY STEEN, Maverick Kai!

Maverick, you are loved beyond belief by your mom, dad, family, friends, and MOST OF ALL, your big brother, Ryker.  We are so excited for the great adventures ahead of you, and are blessed beyond belief to call you our son.

We would like to thank all of our family and friends for your love, prayers, and shared excitement in welcoming Maverick into the world!  Most of all, we would like to thank God for entrusting us to raise another little boy...we are blessed beyond belief!

Dear Ryker,

I will never forget the moment you were placed in my arms at almost 4:00 P.M. on July 4, 2015.  You made me a mommy, and I looked at you, held you, and exclaimed to the room, "he's perfect!"

You were so tiny and full of life, and you had the cutest, squeakiest little cry we've ever heard (hence your nickname from Daddy on occasion, "squeaks").

Your Grandma, Grandpa, Grummels, Mimi, Co, Aunts, Uncles and Cousins were ALL so excited to meet you, and everyone arrived to our hospital room in their most partiotic attire -- all decked out in red, white and blue for YOU! 

It was an awesome day for so many reasons (even the Cardinals won that day!), but one of the most special moments of all happened later that night when Daddy and I cuddled up with you in our arms and watched all of the fireworks shows taking place around the whole city of Des Moines.  I can't think of a better way to welcome you into this world.  God knew the 4th of July would be the best birthday for you; our awesome, special little boy.

Over the past two years, you've had to endure more doctor's appointments than most adults have had to endure in their whole life!  Certainly more than daddy and I combined!  But despite the endless appointments, therapy sessions, poking, prodding and exercise, you continue to be the happiest boy in the world.  Your strength, determination, perseverance, bravery, grace and JOY are second-to-none, and your Daddy and I could not be more proud of you.

Thank you for your endless love, laughter, and happiness.  I have no doubt that you are in this world to change this world, and I can't wait to see what God has in store for you!

As our birthday song goes, "may God bless you and keep you...happy birthday to you!"

Love,

Mommy

Wow, gang, I'm embarrassed!  No posts since March 26th?  Do I still have any followers out there?

We've had a busy spring and busy start to our summer here at Team Steen headquarters, but we're starting to get control and I'm ready to get this blog back on track!

Today's blog is focused on giving you all an update on what we've been up to lately!

We were excited to welcome Baby Zander Wright into this world!  My sister, brother-in-law, and two nieces added the first boy to their family, and Ryker LOVES his new baby cousin!  Seeing him with Baby Zander has assured us that Ryker will make a GREAT big brother!  Congratulations to Team Wright!  You can follow their blog at www.GrowingWright.com!

Logging into the baby monitor and seeing THIS was one of the greatest sights of all time!  We are SO proud of the progress Ryker has made!

This, folks, was definitely a home run!

It may look like Ryker's been practicing his yoga (with excellent form in a downward facing dog), but Ryker is actually learning how to stand!  From being told he may never walk, to THIS, is something we do NOT take for granted!

Over the past few months we have been working hard with Ryker and his speech development.  He has been excellent with sign language, but adding the Augmentative and Alternative Communication (AAC) device has been a game changer (literally!) in our household!  We watch a lot of Cardinals' baseball games per Ryker's requests, and we have had a fun time seeing his personality develop even more with the help of his AAC device!

Baby Steen #2 is one healthy, growing little baby (with about the cutest profile I've ever seen!) -- we are so thankful for healthy reports for this little one!

While mommy and daddy were at the doctor taking a peek at Baby Steen #2, Baby Steen #1 decided to take a leap from his high chair, resulting in two broken bones in his forearm.  Ryker has a cast on since May 4th, and we are all anxiously awaiting June 21st when he can finally take the cast OFF and hit up the swimming pool!

Not even two years old and Daddy has Ryker on a pitch count!  This boy LOVES baseball, and we're awaiting the day for the MLB recruits to come knocking!  Watch out though, with pitching skills like these he's going to have multiple offers coming at him! 

Words cannot describe the joy and excitement we feel when hearing Ryker announce his own name (and, of course, favorite thing to do)!  The use of the AAC device has been a huge blessing for us all!