First, the Spartan experience is way more than getting from point A to point B… it’s about everything in between.  It’s about pushing yourself to be better than you once were – mentally, physically, spiritually.  It’s about stepping out of your comfort zone and being present even when you don’t feel prepared.  It’s about caring for others and making memories with friends and family.  And it’s a unique kind of FUN!I didn’t take many photos or videos.  That’s tricky for me, because I always attempt to record every detail.  But more than that, I knew I needed to be fully present that day… to bask in the beauty of the scenery, appreciate profound nature of our adventure, and to catch all the little moments through my own eyes, not the camera lens.  It was less like “running a Spartan race” and more like having the best VIP spectator tickets in the world.  So I’m extra grateful for those who captured the day on film!For all my pre-race worrying, it never occurred to me to be concerned about literally putting him into the hands of veritable strangers.  I was far more worried about him tripping and breaking his own arm than about any kind of contraption they’d use to hoist him 20ft in the air.  I was more anxious about whether or not we packed enough snacks and water to sustain him for 5 miles than about watching him climb precariously across their backs.  Those men (and women) are willing and able to trust others with their lives and have put their lives on the line for others, and it was very natural to trust them.They worked hard to keep Ryder safe (just like they do with any athlete), but they didn’t patronize him.  In their eyes, he wasn’t just a kid playing Spartan.  He was one of the guys… a wounded warrior just like them.  They sought his opinion, included him in discussion, and never doubted his ability or bravery.  It was a team effort, and every time he smacked that bell, it was just as much their victory as his.  I’m confident that this was not a special circumstance or a show they put on just for our sake.  It’s just what they do.  It’s who they are, and it’s part of what makes Operation Enduring Warrior so powerful.  The wounded veterans they empower aren’t just statistics, news stories, or souls to pity.  They’re treated as individuals.  Their strengths are utilized and their weaknesses vanish as they realize they’re stronger than they thought they were.When tragedy strikes, we tend to turn inward.  Reluctantly, we learn to accept help while focusing on recovery, and after a while it’s easy to quit looking for ways to help others in return.  This particular group of people has learned that the best way to slay their own demons (which are bound to rise again and again) is to help someone else conquer theirs.

Their words are (figuratively) loud – they are always quick to encourage and uplift.  But their actions are even louder.  They didn’t just cheer Ryder on from the comfort of their computer screens.  They sacrificed time, talents, and treasures to make the trip to Tahoe to show him that anything is possible when you set your mind to it and align yourself with good people who can help.  In the days since the race, I’ve used our team as an example many times, reminding the boys that we never saw them demand to be first or get upset when someone was faster than them, etc.  They served as an incredible example to look past our own selfish noses and be intentional about finding a way to support someone else or lend a helping hand.#TeamRyder also reminded me why I’m so passionate about sharing our story.  Everyone loves to share the happy stuff.  It’s easy to talk about the successful moments when everything is polished to perfection and turns out just the way we planned, or the warm-fuzzies when we’re surrounded by loved ones and everything is all rainbows and glitter.  But when we are courageous enough to share the reality that sometimes tarnishes our Facebook Status-worthy existence — those times when we feel isolated, hurt, angry, or afraid — when we’re honest about how our perfect plans came crumbling down around us under circumstances we couldn’t control, someone always comes out of the woodwork and says, “Thank you for sharing… I thought I was the only one!”  And that’s when we have the opportunity to wrap our arms around them and say, “We’ve been there.  You’re not alone.  We’re gonna get through this together.”  This time, they did that for us… they’ve been there, and we got through it together.Confession time: Ryder still hasn’t mastered shoe-tying (partially because it’s really hard, and partially because he’s a wiggly boy who can hardly sit still long enough to say the word “shoe”).  But the truth is, I’m not entirely sure that was God’s objective when he sent Norbie (and the rest of the gang) into our lives.  Now and forevermore, Ryder will have a unique selection of friends he can call when Mom and Dad just can’t relate… cheerleaders who will be in his corner when he needs a little encouragement that only certain people can give. What an incredible gift!Social media is a tricky beast.  It can be a time-sucking, joy-stealing, bad-news-dealing monster.  But every now and then, it can be used to bring a random smattering of people together to provide support and encouragement and love that changes their lives forever.  I’ve seen it happen with a group of parents whose children are living with the same condition Ryder has, and it happened again to form #TeamRyder.  It’s a story that can never be fully told to those who aren’t living it, and a gift I will never take for granted. Dear #TeamRyder,
For the umpteenth time (because I could never say it enough), thank you.  Our time together in person was short but incredibly sweet, and I can’t wait until we meet again for some more mud, sweat, and tears.  We are thinking of and praying for each of you more often than you know.
With love and gratitude… AROO!***Did you miss the beginning of the story?  Catch up on part 1 and part 2.***

In the weeks leading up to the race, I swung freely on the pendulum between excitement and panic.  I was excited about the opportunity to meet these great people, test my own physical and mental fortitude, and make memories with my family.  But I was nervous about everything else… Would Ryan’s back heal in time?  Would we recover from our trip to Disneyland quickly enough?  Would Ryder be too overwhelmed or afraid to do the Sprint?   Would he get hurt?  Would he get tired halfway through and give up?  Would I get hurt or tired and give up?  Would race officials freak out?  Would we disappoint our team somehow?  In my head, I could see every awful scenario play out because I may not be the strongest or fastest person out there, but I’d earn the Elite prize in worrying if there was such a thing.  I kept thinking, “What have I gotten us into?!”

Then, while sitting in church the Sunday before the race, I heard the phrase “mighty right hand” over and over again in my head.  When I got home, I googled it and the first verse that came up was Psalms 16:8:

I have set the Lord continually before me; Because he is at my right hand, I will not be shaken.

And while that wasn’t the end of my worry, that verse became my battle cry and my prayer, even during the race itself.  “God, I don’t know why you brought us all together.  I don’t know what we’re doing, but you sure do.  You’ve got my little boy by his floppy right hand, and I WILL NOT BE SHAKEN.  No weapon formed against us will stand… not even fear.”

At the last minute, a couple of the team members realized that if they ran the Beast on Saturday, they could earn their Trifecta… an incredible feat!  So before my family (including my parents) even left Modesto, most of #TeamRyder had already jumped over, rolled under, and climbed through a series of walls, waded waist-deep through freezing water, and climbed a mountain.  We drove straight to the Festival grounds to get a glimpse of what we’d face the next day, and were immediately drawn in by the energy and excitement all around us.  We stood near the finish line for a while, enjoying the sunshine, cheering for each runner, and analyzing the obstacles we could see.That evening, Priscilla and Patricia cooked a delicious meal and invited us over for dinner.  Shortly after we arrived, our weary warriors walked through the door.  They were dirty and exhausted from spending nearly ten hours on the course, but they did it!  Having the opportunity to hug each one and share a meal was a huge blessing, and helped calm my anxious heart.  Some of them presented Ryder with gifts… a patch from Jonathan’s Army unit (and an amazing story to go with it), Operation Enduring Warrior stickers and tattoos,  Lodi Police patches, and obstacle course racing gloves from WarriorPak.  We didn’t have much time together that night, but it was sweet nonetheless.The next morning, my parents made breakfast, and we headed back to Olympic Valley for the Kids’ Race.  I had no doubt Ryder would totally kill it, but I was concerned about Evan.  He tends to wimp out quickly when he’s not really motivated.  But he surprised all of us by flying right over the first wall and leaving the rest of us in his dust.  We had to remind him to slow down and wait for his team, but he was having none of that.  He completed every obstacle on his own, and after a brief rest said, “Here Mom, hold my pwotein bar.  I’m goin’ back out.”  For the sake of timing, he had to wait until we started the Sprint to run his second race.  He took a little spill, but with the help of a couple other kids he dusted himself off and kept going.  I’m so proud of his determination and enthusiasm!One thing on everyone’s mind that morning was the weather.  Saturday was sunny and cool, but pleasant.  Sunday, temperatures dropped, the wind picked up, and a storm was expected to blow in.  As our start time drew near, officials postponed our heat to allow for a medical helicopter evacuation.  So we knew we were in for an adventure, but wait till you see…!

We were pleasantly surprised, and extremely humbled by the heartfelt introduction of our team, given by emcee Robert Lyday.  While we stood at the back of the pack, Robert shared Ryder’s story and encouraged everyone to let go of their excuses and fears and go all-in.  Then the crowd parted, bagpipes blared through the loudspeakers (a traditional entrance for OEW teams before a race), and everyone reached out to high-five Ryder as we made our way to the front.  Ryder has a big personality, but he gets a little shy when the attention is focused solely on him.  I could tell he was a little embarrassed but he handled it like a boss, dodging back and forth across the chute, high-fiving and fist-bumping his way to the start line.After posing for photos with a hundred of our closest friends (ha!), we took off.Ryan and I were the only ones on our team who hadn’t yet had the privilege of racing with OEW, but it didn’t take us long to catch on to the methods behind their obstacle madness… offering a knee and then a shoulder to boost someone over a wallwhere another team member was waiting on the other side to help with the dismount.Or forming a human bridge, making it possible to traverse the monkey bars with one arm:Photos are great, and it’s really amazing to witness in person, but it’s a whole other level of awesome to get to participate!

Over the first half of the course, we kept a steady but comfortable pace (well, as comfortable as one can be while climbing a steeeeeeeeeeep hill).  Everyone took turns trying the obstacles, and we stopped every once in awhile to catch our breath, grab a snack or drink, and take in the scenery… that is, until Ryder gave us the “What are we waiting for?!  Let’s GO!” look, and off we went again.

These two got quite a bit of attention from fellow racers on our journey.  I suppose it’s not everyday you find an 8yr old with a sling and a goggle-wearing dog on an obstacle course.  :) Right around the halfway mark, the sky grew dark and snow began to fall.  It was just a little at first, but eventually we got it all… hail, sleet, rain, and more snow.  Since Ryder doesn’t have an ounce of fat on his body, he began to get cold quickly.  Team members offered jackets, hats and neck covers, and we even got a spare hand warmer from a passing Ultra Beast competitor.  We learned that race officials had closed all water obstacles (because as athletes exited the water, ice immediately formed on their bodies!), and they were disassembling a few wooden obstacles because the wind was breaking them apart.  Then we got stopped by an uninformed volunteer who told us Ryder was too young to be on the course, and would have to leave.  Thankfully that got resolved quickly (because we had special permission), but since Ryder is a mega rule-follower, it shook his mental focus pretty badly.  At this point, our objective turned from a semi-leisurely hike to ensuring Ryder could experience every obstacle and still cross the finish line without needing medical intervention.The last few obstacles were pretty intense!  The snow had turned back to sleet, which meant we couldn’t just brush it off and stay warm.  And we knew we were thiiiiiiiiiis close to the finish line so the adrenaline was really pumping.  When we got to the Slip Wall, Evan and my parents (who had been staying warm inside the ski lodge) noticed Norbie’s head pop up over the top of the wall and rushed out to cheer us on.  We had to slap the ropes onto the surface of the wall to crack off the ice, which made me extra grateful that Ryder had been safely hooked into a climbing harness, just in case.  (The following photo is not the Slip Wall, but gives glimpse of the conditions… sorta.)I’ll let you watch the Herculean Hoist for yourself… three warriors, three arms, allllllll the feelings.

And then there was the rope climb.

This was the moment when Mama Bear totally lost her junk.  I shed a few tears in the weeks prior to the race and here and there across the course, but I ugly cried when my boy smacked that bell.  I mean loud, full-body sobs so big my daddy came running over to make sure everything was ok.  And the fact is, everything was amazing.  Some of it was relief… we were nearly finished and everyone was safe and happy.  But also, before Ryder got sick he could fly effortlessly up a rope as easily as he walked on the ground.  I hadn’t seen him at the top of a rope in nearly two years, and it was incredibly emotional to be in that atmosphere, surrounded by those people who were just as proud of Ryder as we were, and watch him conquer something that had become a sad reminder of the way things “used to be.”

But he did it!  WE did it… and we couldn’t have done it without the selflessness and encouragement of each member of our team.

As soon as Ryder completed the final obstacle, we crossed the finish line where Robert was waiting to hang those hard-earned medals over our necks… a tangible souvenir representing the life-changing journey we had all just taken.It’s still hard to wrap my head around how all this came together.  It’s a made-for-TV style story that’s just too good to believe.  And I know I told them all a thousand times, but “thank you” will never adequately express the gratitude we feel for this precious, unique new family of ours.  Each of them contributed in immeasurable ways to a weekend full of memories and life lessons we will never forget.  They did more than just wish us well from afar.  They showed up and provided an invaluable morale boost at a time when we were growing more and more weary.

We can’t wait to see them again someday, but until then we’ll be looking for opportunities to pay it forward.  AROO!

Please take a moment to check out Operation Enduring Warrior and A Combat Veteran’s Hope, two very important organizations that celebrate important people.

For those of you who are just joining us, allow me to share a little basic background information:

Ryder’s name means “Mounted Warrior” and his battle for survival started long before he was born.  We had three miscarriage, losing four babies, before getting pregnant with him (and suffered another loss between Ryder and Evan).  Two of those miscarriages were caused by a rare and dangerous condition that, if left undetected, could have killed me.  Then, at 30 weeks pregnant with Ryder, we moved from California to Illinois where I contracted West Nile Virus and we feared we’d lose him too.  By the grace of God, he was born completely healthy, and has been active and incredibly strong his entire life.But nearly two years ago, at the age of six, he and his little brother Evan caught a common cold that would change our lives forever.  Ryder’s immune system attacked his body instead of the virus, damaging his spinal cord and shutting off the signal to his right arm, literally overnight.  (If you’d like more detail, start here.)Like any true warrior, he was determined to get back to “normal” as soon as humanly possible.  We started physical therapy during our week long stay in the hospital, and within a week of his release he had already taught himself how to write left-handed.  It wasn’t long before he regained some strength in his core and his grip, which meant he could ride his bike.  Almost every day, we heard “I think I want to try <insert something daring here> today!” And in an effort to keep him from throwing himself a pity party we said “Ok, buddy… let’s give it a shot!”  He worked really hard, and managed to accomplish just about everything he set his mind on.Fast forward almost two years, and he still has very limited use of his right arm.  But he’s an extraordinary boy living an ordinary life – a fact that we celebrate because “normal and boring” doesn’t come naturally in our family.  He plays soccer, does gymnastics, runs, rides, and wrestles like any other normal kid.  Then one day he discovered obstacle course racing on TV, and on a whim, Ryan and I decided to sign the boys up for a Spartan Kids race.  The soonest, closest one was in Tahoe, so that’s the one we chose.  A few days later, I watched a video on the Spartan Race Facebook page featuring a one-armed military veteran climbing a rope.

Little did I know, leaving an innocent comment about being excited to show the video to Ryder would kick off a series of events no one could have predicted.  (Please take the time to read about some of that here.)

“My thoughts are nothing like your thoughts,” says the Lord. “And my ways are far beyond anything you could imagine.” [Isaiah 55:8]

Over the course of a few weeks, the characters in our mind-blowing story found out Ryder was signed up for the Kids’ Race and decided they wanted to come cheer him on.  As plans were being solidified, they decided they didn’t want to come all the way to Tahoe just to watch a 1/2 mile scramble.  They wanted to do the Sprint too.  And they wanted Ryder to do it with them.

And suddenly, #TeamRyder was formed.  The team consists of Shannon Silcox, a personal trainer and the race volunteer who posted the video above; Jonathan Lopez, the wounded veteran and Operation Enduring Warrior (OEW) athlete featured in the video, and his wife Patricia; Jeff Farmer, the veteran and OEW athlete who alerted Jonathan to my comment; Norbie Lara, OEW athlete and the wounded veteran who visited us at home, and his wife Priscilla; Brian Clarke, an OEW Ambassador; and Zoe the Wonder Dog, Jonathan’s faithful companion.  We were also blessed by my parents, who came along for moral support, and to hang out with Evan while we raced on Sunday.

Stay tuned to see how it all came together…

If you follow me on Facebook or Instagram, you may have noticed Ryder’s obsession with strong interest in all things obstacle course racing.  He loves to drag a yoga mat and some kettlebells out into the living room and workout while watching American Ninja Warrior or Spartan Ultimate Team Challenge.  He knows the ins and outs of every obstacle, which competitors made it to the finish, who failed on which obstacle, and he even quotes the commentators from time to time.  We thought it would be neat to harness his enthusiasm and give him the chance to become a Spartan himself, so we signed both boys up for the 1/2 mile kids race in Tahoe on October 1st. (And then we realized that if we’re driving all that way we might as well sign up too, because if our 5yr old and 7yr old with one arm can do it, we have no excuse not to!  And then I realized that it’s TAHOE.  Tahoe = cold water and altitude… and burpees.  Lots of burpees.  But I digress…)  

A couple weeks ago, I happened to catch a video someone (whom I later realized was a personal trainer named Shannon) posted to the Spartan Race timeline.  It featured a one-armed combat veteran in a (muddy) yellow shirt climbing a 20-foot rope during a Spartan race.  The rope was slippery, so he struggled to reach the top a few times.  But he persevered, and when he finally got close enough he just took off his hat and whacked the bell with it - mission: complete!  My boys were still sleeping, but I posted a comment on the video about how I couldn’t wait to show it to Ryder… to show him how someone “just like him” can conquer a seemingly insurmountable task.

A couple hours later, I got a friend request from none other than that combat veteran himself!  Jonathan Lopez was alerted to my comment by Jeff Farmer – a contestant on the Spartan TV show.  Both men are a part of an incredible organization called Operation Enduring Warrior – a group of current and former military personnel who work with wounded veterans, teaching them to overcome physical and emotional hardship and empowering them to accomplish things they didn’t think were possible.  Many times, they accomplish this monumental task by training to become adaptive athletes.

I was so touched that these two heroes had taken an interest in Ryder’s story, and while they live on the other side of the country, they knew of another OEW athlete and fellow one-armed warrior who lives in Visalia.  They put me in contact with Norbie Lara, hoping that someday we’d be able to meet.

Someday came sooner than I ever expected…

Ryder has recently become intent on learning how to tie his shoes, but I had no idea where to start.  Sheepishly, I messaged Norbie one night to see if he had any tips he could share.  To my surprise, he said, “I can do better than share tips… I will come and teach him myself.”

It turns out that he was planning to drive up north to visit family, and offered to stop by for a bit to meet Ryder and offer some encouragement.  When he arrived, we chatted for a while… He shared about his family and how he was injured, and we explained a bit about what Ryder has experienced.  He made sure to tell Ryder that it’s important to remember he doesn’t just have one arm, he has four fingers and a thumb.  It’s a small shift in his perspective that can help him focus on, and make good use of what he does have.  He also said, “It’s not about learning the way to do something, it’s about finding a way.”  That one will stick with me forever!I was impressed by the gentleness of his demeanor (which reminds me so much of my Grandpa Mac, a WW2 veteran) and his patience when Ryder became frustrated by not catching on immediately.

Before he left, Norbie surprised us by presenting Ryder with a special OEW coin.  He said, “We only give these out to people who inspire other people and do good things, and I can tell that you are one of those people.”  <insert all the tears here!> The highlight of the visit came as we walked Norbie to his car.  After shaking hands, Ryder exclaimed, “FINALLY! Someone who shakes hands CORRECTLY!”  It’s amazing how awkward shaking hands can be for someone who only has a left hand to shake with, and Norbie really got a kick out of Ryder’s excitement (and totally agreed with him, too!).

The thing is, Ryan and I can only relate to him on so many levels.  We know the day-to-day struggles.  We feel the heartache and frustration.  We remember the fear.  We answer the questions.  But there’s a whole other level of understanding we will never truly reach because it didn’t happen to us.  It would be naive of me to believe that Norbie and Jonathan (and countless others) have always felt so calm and confident.  I would be remiss if I didn’t recognize the struggles they’ve faced (and continue to greet head-on)… the doubt, the depression, the anger, the grief, the physical pain and limitations.  But they found others to come alongside them – to pour into their spirits and give of their time, talents, and treasures in the same way they’re doing with Ryder now… paying it forward.

In short, Norbie’s visit was a tremendous blessing to our family.

God used a silly comment on a Facebook video to connect us with precious new friends we wouldn’t have met any other way – fellow warriors who can inspire our son as he continues to inspire everyone he meets.  Big heros who have taken this special little boy under their wounded wings and into their unique brotherhood.  And we will forever be grateful.

I thank my God every time I remember you.  In all my prayers, for all of you, I always pray with joy.
Philippians 1:3-4

***Not only is Norbie an OEW athlete, he is also the Director of A Combat Veteran’s Hope, a non-profit organization here in the Central Valley that reaches out to all generations of combat vets to help them network with other vets, reconnect with their families, and successfully reintegrate into the community.

Before I continue, I need to expand on the “a” word I used that (understandably) freaked everyone out.  Amputation isn’t happening any time soon – if ever – but it still had to be discussed.  The short story is that the risks of keeping his arm (repeated injury, infection, decrease in function, etc) would have to far outweigh the benefits, and unless it was a life or death emergency, the decision would not be made without Ryder’s input at an age where he truly understood what it meant.  We’re talking a decade or more.

<insert deep cleansing breath here>

Today we visited Shriner’s Hospital for Children in Sacramento to meet with another new-to-us doctor with the hope that she’ll either see something we’ve missed, assure us that what we’re doing is the best for our boy, or point us in a new direction.  We were greeted in the lobby by Dani the therapy Schnauzer while a lady in a bedazzled white fez played patriotic tunes on the piano.  The staff was friendly, the facility was beautiful, and the system was efficient.Two doctors examined Ryder, and both seemed to be on the same page.  They agree with the previous doctor that Ryder is not a candidate for any kind of nerve surgery.  The window of success has passed and the risks are greater than the chance for success.  However, they introduced something to us that has never been mentioned before.  They suggested something called a free muscle transfer.In Ryder’s case, they would take the gracilis muscle from one leg and situate it into his upper arm in order to give him the ability to bend his arm at the elbow and open his fingers/hand.  So far we don’t see any downside because it’s not a time-sensitive procedure (meaning we’re not in a hurry to decide), and using the gracilis will not decrease the strength in Ryder’s leg because there are other muscles that do what that one does.  He would be in the hospital about five days, and then in a sling 24/7 for about a month.  The very worst part (which isn’t really a big deal) is that we may have to go to Dallas for the surgery.  Once Ryder is finished growing (more than 10 years from now) we may consider fusing his wrist and/or shoulder (if they haven’t already strengthened on their own by then) to provide more stability to his movement.

The doctors will be sharing their clinical notes with some colleagues around the nation to get some additional opinions, and we set up a follow-up appointment to discuss their findings in October.  So aside from miraculous healing, we’re praying hard for wisdom as we navigate some new options.

We’re so grateful for today’s meeting, some renewed hope, and some confirmation that even if we don’t go through with this procedure, we’re doing all the right things.  And we’re grateful for those of you who have hung in there since the beginning, praying and crying and hoping right along with us.

We are incredibly proud of our boys, and are excited to see what the God has for them in the coming year… including running their first Spartan race in October (which means Ryan and I will be as well).  Eeeeeeeek!  Stay tuned

Yesterday we made another trek to Oakland to meet another new doctor – a pediatric neurosurgeon.  The first time we asked to meet with him, he didn’t even want to bother speaking to us.  He said he could tell just by reviewing Ryder’s chart that he is not a candidate for any form of surgical intervention with regard to his nerves.  But that’s not good enough for us.  We insisted that he examine Ryder in person first, and then make a determination.  And if the answer remained the same, so be it.  But we couldn’t just sit back and take him at face value, left to wonder “what if?“.

Most of these appointments end the same way.  The doctors ask Ryder a bunch of questions, watch him demonstrate what he can and can’t do, and then they say “Well, this sure is mysterious!  Just keep doing what you’re doing and we’ll see you in six months.”  It’s easy to walk away from an appointment like that with our hope of recovery still in tact because no one who has said he’ll never improve has taken the time to explain why they feel that way.

Until yesterday.

After noting that our warrior’s right hand is significantly smaller than his left hand, Dr. Pang spent nearly two hours drawing diagrams and playing and replaying Ryder’s original MRI footage to help explain his belief that it is highly unlikely that Ryder will see any more recovery.  He had some very tough findings to share, and did so with as much compassion as possible.

I’ll spare you all the medical mumbo jumbo and summarize… (Please bear with the military theme that came about by accident.)

Basically, Ryder’s immune system mistook his common cold for a nuclear attack.  It rallied so many troops that they ended up fighting amongst themselves and decimated their own capital city, otherwise known as his spinal cord.  (He is, after all, a Barr.  We don’t do anything halfway!).  Unfortunately, the portion of the spinal cord that sustained the most damage is the innermost part that contains the most important data.  And the length of the affected area is so great that it has left us with no reinforcements. And while the muscles themselves still retain the ability to get stronger, the nerve endings that plug into the muscles can only go so long without hearing from the Commander (or receiving messages from the brain) before they die.  So while other kids with this same affliction are having surgeries that borrow nerves from other places to bridge the gaps and retrain the brain, we have nothing left from which to borrow.

This is devastating news.

And so we stand at another fork in the road.  The way I see it, we have three choices.  We can 1) take a knee… end the war… give up.  Or 2) we can believe this one doctor is correct.  We can continue with therapy for the time being, and make plans that could include amputation (yes, I said it).  Or 3) we can fight like hell to find another way.

I’ll give you one shot to guess which road we’re marching down…

We will continue with therapy because it’s still beneficial.  And we will be seeking a second and third opinion.  Not because we believe the diagnosis will be different, or because we’re waiting for someone to tell us only what we want to hear.  But because we believe it’s our duty as his parents to knock on every door and try to get information from as many different perspectives as possible before we make any unalterable decisions.

And we will continue to pray because we believe in the power of a mighty God who created entire galaxies with a single thought.  We can’t waste time or energy asking “why?” (except for yesterday in the parking garage, sobbing into my husband’s chest… but I’m only human.).  Instead we’ll ask “what’s next?” and wait to see what we can learn (about ourselves, about God, about medical technology, etc.) and what we can teach others.

God, the Great Physician, and the fiercest Warrior of them all, created this little boy and had a plan for his life even before it began.  He hand-picked Ryder especially for us.  And with His help, we’ll make it through this… whole and healed, floppy, or one-armed, we’ll win this battle because we’re not giving up.

If God is for us, who can be against us?  (Romans 8:31)

Please continue to remember our family, specifically our precious fighter, in your prayers.  He is such an inspiration to so many… he hasn’t given up hope and works so hard every day.  And he is encouraged by knowing he has your support.

A few weeks ago, we left the house before dawn to meet a new-to-us neurologist in Oakland.  You can read more about that appointment here but the gist of it is that she listened to us and came up with an action plan.  And the best part?  She followed through!  She got right to work ordering an MRI for Ryder (which you can read about here), and intended to set up a multi-doctor appointment with an orthopedic specialist, a physical therapist, and a pediatric neurosurgeon.  The neurosurgeon basically blew us off (this seems to be a recurring theme lately), but the ortho and the PT were more than willing to collaborate.

So last Monday we headed back to Oakland to meet Dr. Kaiser (who works, ironically, for Kaiser), and Jody the PT.  The doctor ordered an xray of Ryder’s arm before we even got into a room.  We were relieved to see that his fractured humerus (which you can read about here) healed beautifully, and that area is now the strongest part of his arm because it has so much extra calcium.  Go figure.

We were impressed with the doctor’s thorough examination and willingness to listen (see?  another theme…).  He explained to us that there are orthopedic options for Ryder, but that we ought to reserve them as a last-chance scenario because they are invasive and permanent.  If we come to a point where we are no longer seeing any improvement at all in Ryder’s strength or function, we may be able to do a shoulder fusion (where they literally fuse the shoulder joint in place) or a muscle transplant, likely from his trapezius muscle.  There are lots of “but if… then” statements to complicate things (but Barrs never take the easy road anyway, so…) but it was kind of a relief to understand that possibilities exist.According to the neurologist, Jody’s role in our visit was to help us design a special “figure-8” brace to pull Ryder’s shoulder back into place.  Interestingly enough, both Jody and Dr. Kaiser (along with our OT and chiropractor) don’t feel that Ryder’s shoulder is actually out of place.  It just looks scarier than it is because his muscles are gone, exaggerating the sharpness of the bones.  They felt that we shouldn’t bother with adding another cumbersome brace into the mix, but that adding a belly strap to his sling would be a great safety mechanism.  Having his arm strapped to his belly will keep it from flopping up and down when he runs and jumps, and if he falls it’ll be safer to have it tucked right next to his body.

So Operation: Sling Redesign happened…It took some time to study photos of slings with “immobilizers” online and figure out how to make it work on my sling design.  But I’m pretty happy with how it turned out.  It’s a bit heavier than he’s used to because there are some extra nylon straps and two additional D-rings, but it’s sturdy and I think it looks pretty sharp.

I don’t believe in coincidences, but sometimes I can be a little slow to pick up on the cool way God orchestrates certain things in our lives.  I started fooling around with my sewing machine when Ryder was a newborn baby.  It was a novel way to occupy myself, save a little money by making or fixing things, and keep my creative juices flowing.  But I never could’ve imagined how God would use my therapeutic hobby to serve my family in this way.  It’s a great challenge to design something like this, but there’s a bit of pressure too.  If it doesn’t work, will it set back his progress?  Will it be comfortable?  Will it be “cool” enough to wear in front of friends?  I’m thankful that it does work and it’s as comfortable as a sling can be… and he can proudly sport his school colors every day, which increases the cool factor.

I got to see it in action for the first time at gymnastics, and it worked great!  He landed a few cartwheels (thanks to improved balance) and didn’t have to hold his arm down as he bounced across the tumble track.  Can’t wait to see how it holds up during soccer season!

Never satisfied with less than the best for our kids, we continued to press on our neurologist about getting some facetime with the neurosurgeon.  We have a few questions about some specific procedures that other kids with injuries similar to Ryder’s are having.  Like, “Why isn’t Ryder having these procedures?” for starters.  We even gathered the names of the doctors we know of who are performing said procedures and let our doc know that we are willing to travel to the ends of the earth if it means we can help our boy.  Thankfully she understood that we aren’t bluffing, and we now have an appointment scheduled with the neurosurgeon for the middle of May, thankyouverymuch.  

We are so grateful for the doctors God has led us to.  We’re confident in the minor tweaks we’ve made to his therapy regime, and are looking forward to seeing more progress in the coming days.  In the meantime, we’ll be getting plenty of use out of our season passes to the Oakland Zoo… We’d love to meet you there!

And because we’re Parents of the Year, we bribed him.  “Stay still the whole time, and you can pick out whatever you want from Mr. T’s” (a local mom ‘n pop donut shop).  C’mon… you’d do it too!  He’s seven years old, for cryin’ out loud.  “Still” is not in his vocabulary, especially for 40 minutes.

Thursday morning arrived and despite my scattered brain, we managed to arrive on time.  Ryder was in good spirits, but I could tell he was a little nervous.  After about 40 minutes in the waiting room (!!!) we followed a man through some winding hallways to the MRI waiting area.  As soon as we turned that corner, my stomach flipped and plummeted straight to my feet.  I talked a little bit about my Arm-mageddon induced anxiety back here, and there’s probably an element of PTSD in there somewhere too because I was suddenly transported right back to that first MRI.  I could practically see his little body laying on that gurney, lethargic and flushed from his fever, and confused about the events unfolding around him.  I literally had to take a deep breath and shake it off to bring myself back to our present situation.

It all happened pretty quickly from there.  We met the technician, who was friendly and kind, and then he asked the greatest question I’d heard all day: “Will you be staying in the room with him?”

YES!!!  A thousand times yes!  You better believe it was all I could do to not drop straight to my knees and thank God for not leaving my baby all alone in the noisy tube for FORTY MINUTES.  By himself.  See, Ryan was originally supposed to be out of town for the day, leaving Evan stuck in the waiting room with me.  But Wednesday afternoon I got a reminder email from Kaiser which included a warning: “Do not bring children who can’t be left alone.”  Hmmmm… uh… ok?  As it turns out, God orchestrated a way for Ryan to stay home with Evan.  And because I’m a just in case kind of gal, I didn’t wear earrings or glasses or a sweatshirt with a zipper.  I wasn’t about to let anything stand in the way of the possibility of staying with my boy.

The tech explained that the main portion of the scan would take 30 minutes.  At that point, they would determine whether or not they needed to add contrast, and if so it would add ten minutes to the procedure.  Unfortunately for Ryder, “adding contrast” meant getting poked.  He developed quite a fear of needles in the hospital due to all the painful IV changes and blood draws, and he was not happy to learn that he might have to endure another one.  But we didn’t have time to dwell on it.  The technician ushered us into the room and boosted Ryder up onto the table.  He gave us both earplugs, placed the astronaut helmet over Ryder’s face and instructed me to “Don’t push any of those buttons!” as the table scooted back into the tube.

My prayers began immediately… Please God!  Comfort my baby.  Give him supernatural stillness, and keep us both calm.

As the minutes passed and the noises changed in rhythm and tone, I watched Ryder’s chest rise and fall while I rubbed his legs.  Sometimes he took slow, even breaths.  But sometimes breathing was hurried and his fingers twitched, and I feared he would cry or attempt to sit up.  And just when I thought I might need to squeeze the emergency stop thingy, he would lick his lips, take a deep breath and smile.  

He says he smiled when the machine made some particularly funny sounds, and when he remembered he could go to Mr. T’s (see? bribery works!), and that there were definitely times when he was trying not to cry.  But he was a rock star… he stayed more still than any seven year old boy I’ve ever seen.

Thirty minutes passed, and the tech came in to administer the contrast.  As expected, the tears began to flow as the panic set in and I was even more grateful to be right there will him, offering hugs and encouragement.  The sweet tech talked him through it, asking if we had any pets and if they’d ever scratched him, because this needle was going to hurt way less than a scratch from a horse-dog.  And he was right… the anticipation was far worse than the actual injection, praise the Lord.

The next ten minutes seemed like a walk in the park compared to what he’d already completed, and before we knew it he was finished!  The tech came back and helped Ryder out of the machine, praising him for his bravery and confiding that he has “a million adult patients who can’t stay as still as you did.”  <insert huge Ryder grin here>

After a quick chiropractic adjustment to clear our heads, we made our way to Mr. T’s where Ryder picked out a cinnamon roll the size of his head (complete with inch-thick frosting) and some OJ.

This little boy has the heart of a warrior.  He is my own real-life superhero, and he can do hard things.  I am so proud of the maturity and bravery he displayed in the face of fear and uncertainty… again.

So now we wait to hear the results, praying all the time that they provide something we can use to further his recovery.  And we’re taking another trip to Oakland on Monday to meet with a pediatric orthopedic specialist and physical therapist, hoping to gain some more perspective and come up with a plan for continued care.

Thanks, as always, to those who are still faithfully praying for our family.  We love and appreciate you more than we can explain.  And in case you’re wondering, Evan got a donut too.    

For the last couple of months, we’ve been pressing on our neurologist to get in touch with other doctors around the country who have been working with other “Outbreak Kids” and having some success with tests and surgical procedures we haven’t even discussed.  We were simply hoping to gain some perspective, and see what we might be able to try.  He totally blew us off, noting that he never believed Ryder would progress past what he observed in the hospital, and that there’s really no use in trying anything else because it won’t work anyway.

Clearly he doesn’t know Ryder very well, because he certainly has progressed (albeit slowly), and he won’t give up until he’s satisfied.

Long story short, we were given the name of a different neurologist who dove head-first into a difficult case that every other doctor ran away from, and she got results.  We met with her in Oakland yesterday, and we appreciated her willingness to listen to everything we had to say.  She thoroughly examined Ryder, and asked plenty of questions about our experience so far.  And then she did just what we hoped… she set to work scheduling appointments with a pediatric orthopedic specialist and pediatric neurosurgeon who will review Ryder’s case and determine whether or not he would benefit from tests or surgical procedures.  We’ll also meet with a physical therapist whose job will be to help us design a special brace for his shoulder to provide more stability.She brought up Ryder’s x-ray from when we discovered his broken arm, and explained that it broke because he has osteoporosis.  Since his muscles have atrophied, they aren’t giving his bones a workout which has made them weak and brittle.  That’s a scary pill to swallow, but it makes sense.

She also noticed that Public Health determined the virus Ryder had was Coxsackie B3.  Knowing this doesn’t change anything for us, but it’s interesting nonetheless, especially since the symptoms listed on Wikipedia have nothing to do with our experience.

As far as physical changes go, both our occupational therapist and our chiropractor have noted that the subluxation (separation) in Ryder’s shoulder feels a little smaller lately (which is a good thing).  We have also noticed stronger movements in his thumb as well as a few other places.  “Stronger” is relative, but we’ll take it!  We resumed e-stim treatments at home a couple weeks ago as well.

Ryder continues to live life as normally as possible, and we still work hard to make it possible for him to try whatever he wants.  Most recently, he asked to go to the driving range… something he hadn’t done since before he got sick.  Situations like this can be scary for us because Ryder is a very emotional kid, and if it turns out he’s not successful at something, it can be devastating for him.  But we managed to scrape up a left-handed iron for him to try, and in typical warrior fashion, he proved that he can do whatever he sets his mind to.  He enjoyed himself so much, we went ahead and purchased a full set of left-handed clubs for him, and we’ll be dusting off our own clubs right along with him.My heart is really conflicted lately.  I’m SO proud of how hard Ryder has worked and the attitude he has maintained over the last 15 1/2 months, and there are so many opportunities to celebrate a new success, and so many times when I feel like complete healing is totally attainable.  But there are still plenty of heartbreaking moments where I witness his frustration or embarrassment over a question asked by a stranger or realizing he can’t do something the way his friends can.  It’s the worst kind of torture.  There are times when I am surprised, or maybe just snapped back to reality – like when I watch him struggle to get his shirt off, or have to wait for him to accomplish a task because doing it one-handed just takes longer – because I often forget that his arm still doesn’t work.  And sometimes we become complacent… we’ve learned how to function pretty smoothly on a daily basis.  But he’s seven, and still lives under our roof where we can protect and encourage and come to his rescue when he needs help.  However, it won’t be long before we start facing new obstacles.  Will he be allowed to get his driver’s license?  Will he need special controls or a handicap placard?  How will he type a paper for school, or text his friends?  What about when he goes off to college and has to ask his buddies for help, or when he gets married and has to do some kind of household repair?  I realize these are all first world problems and that, just like everything else, he’ll figure it out eventually.  But my mama-heart breaks for him during these lessons in humility and persistence.

We cherish your continued prayers and humbly ask you to keep them coming!