In the Kiln

January 23, 2012

As I sit down to write this, I feel I should probably warn you again that I don't believe in living behind blinders anymore, so I'm honest.  I'm doing my best to just be real.  To let you in behind the scenes in our journey.  So if that offends you and you prefer to just see what you see on the outside, please feel free to close this tab and not read further.  Trust me, no judgement from me!

Have you ever looked at a piece of pottery and been awe struck at it's beauty?  The intricate ways the piece flows.  The uniqueness of each and every piece and how no two hand crafted pieces are ever exactly alike.  Back in my younger days, I fell in love with pottery.  I had this amazing teacher in high school, Mr. Fender, who had a passion for pottery, and was incredibly talented.  He taught me to throw cups, vases, teapots, plates... you name it, he could do it and had a skill like none other.  I was never an expert by any means, but I sure loved it.  It would fascinate me how this dirty, messy, lump of clay that I would grab from my clay bag, would be thrown on the wheel and then pressed and pulled, smashed and drawn up, over and over again as the wheel spun around and around at a constant speed, making sure to get all the air bubbles out.

  Slowly, after some long and pain staking hours of work, a masterpiece of art would begin to take form.  After the piece dries fully, the artist can glaze the piece.  The glaze paints on and looks drab and dark and boring.  But then put it in the kiln to be fired at incredibly high temperatures until it is finished.  When you open the kiln to take out the finished masterpiece, it's breathtaking.  That drab and dull piece is vibrant and full of color.  It is truly a work of art!
So in all that pottery garble... I wish I could just show you the masterpiece.  The work of art.  The finished piece.  But unfortunately, I can't.  I'm in that wet and slimy lump of clay phase.  So that's what you'll see... the dirty, messy me today.  And I'm holding on to the promise that HE makes beauty from our ashes (or in my case, my lump of clay!).

So if you haven't totally checked out yet, and you still want an update on this lump of clay :) here's the latest...
Last week was a whirlwind.  It started with a doctor's appt where I was handed a GIANT stack of papers, and told to research doctors, contact a list of at least a dozen fountations, apply for grants and medical assistance for the medical expenses we already have as well as the ones coming, add Kai's name to at least a half a dozen "ataxia registries", and then oh, by the way, read these articles and mark your calendar for these additional half a dozen appointments with new specialists (which also means filling out a novel of paperwork for each additional new specialist, not to mention the gigantic piles of paperwork needed to file for the financial assistance parts!).  Throw in there 2 appointments with 2 different teams from the school system here to request (yet again... the 3rd year in a row now!  but this time armed with an actual diagnosis!) an IEP for my little fighter.  So my deepest apologies to those of you who messaged or texted me or called me and I didn't respond!  I have fantastic intentions of getting caught up... one day :)  I had an inbox flooded with questions about our IEP meeting though, so I wanted to give a quick update (and again... here's a warning that I keep it real so please don't be offended, and I'll go ahead an apologize in advance if you are offended).  Last Thursday, I met with a team from Kai's school to add on an "addendum" to his current 504 plan.  For those of you who aren't familiar, a 504 plan basically allows for a few modifications in the classroom, but you have to re-apply for this each year and hope that the next teacher you get is as on-board as the current one in helping get your child the things they need.  It's also very limited in what it can allow for modifications, so with this plan, Kai couldn't get any sort of therapy (physical, occupational, or speech) at school.  If you've read my last few blogs, you know that we've been asked to have these three times per week EACH.  That's a lot for an only child, not to mention that fact I have 3 other children as well.  So having this help at school would be HUGE.  I'll spare you the details, but the team Thursday was fantastic, and made all the adjustments we needed to at this time for Kai.  Then, Friday came, and that was an even bigger meeting with more higher ups from the school to file the request for the IEP.  IF he were given the IEP, it would stay with him until he graduates from high school, no matter what school he's in.  That would take one big fight off my platter.  So I'm fighting HARD for it now, again.  The meeting went about an hour and a half, then the school power went out and somehow, ALL the information they had just entered over the past hour and a half was erased, so we had to start over.  Awesomeness.  That was the lump of clay being drawn up, getting the air out of the clay, and then smashing it back down.  So we started back at the top, re-entering it all.  Thankfully, one of the higher ups had a fantastic memory and could remember almost verbatim everything we had entered.  The meeting ended with me having to fill out waivers and sign over permissions for the school to contact a handful of Kai's leading specialists to discuss his case and whether or not they felt there was really a need for the IEP.  Then, I was given forms I have to take to his doctors and have them fill out and send back to the school regarding his condition.  And I was told I have to wait... 90 days to be exact.  Yep.  90 days is what they have to read, call doctors, do their own evaluations of my poor child who has been examined by more doctors than you and I have probably seen in our entire life put together.  That part just burns me up.  I fully understand there's just "procedures" that have to be done, and checklists that have to be marked on their part.  But I also have plenty of friends who have kids with their own struggles that are just WAY more common so the school has granted IEP's in 3 weeks or less.  So my struggle is not with my friend's kids, but more with "the system" that is going to waste yet another 3 months of my child's time.  But again... I will just wait.  You'd think I'd be used to that part by now.

Ok, so I'm going to backtrack a tiny bit, to earlier last week.  Remember all that paperwork and registries and all... well, I got right to work on that.  I spent over 5 hours Monday night reading, researching, e-mailing specialists, etc.  One of the registries I was asked to join was one for an organization called the NAF... National Ataxia Foundation.  I e-mailed the head coordinator and told her a 3 sentence version of Kai's story and asked what I should do next to get on the registry.  She immediately messaged me back with the contact info of a lady in California who she said I should contact.  She said the woman had a child with AOA2 (Kai's form of ataxia).  I'm not a very good phone person most of the time, so I e-mailed the lady right away, explained who I was and why I had her info, and asked her if she had any time to send me some of the wisdom she had learned in dealing with her child with AOA2.  Within 2 hours, my phone rang and it was this sweet mom in California, who spent the next hour telling me her story of her 3, yes THREE, boys with AOA2 (she has 1 daughter who is not a carrier), and how she did it, the lessons she'd learned, doctors names who I should contact... and as you can imagine, I was a sponge.  I was SO full of questions, but I didn't know where to even start so I just listened.  And after I hung up that phone, I just cried.  More like melted down.  It's incredibly overwhelming to hear that your child has an incredibly rare disease, that is made even MORE rare by the fact that he's only 8 years old and other documented cases begin as a teenage or early adult onset, not to mention the fact that there's only 15 documented cases of families with this diagnosis so nobody really knows much of anything about it.  Add to that hearing what we can expect life to become (wheelchair bound within a few years), as well as the reality that there is a 60-75% chance that at least 1 if not all 3 of our other kids also have this disease and just haven't shown signs yet... it's a bittersweet thing to know.  Overwhelmed doesn't begin to describe it.  Yes, I know, I have a God on my side who loves my child more than I could ever even dream of loving him.  Yes, I know, HE can heal if He so chooses.  Trust me, I've read all of those verses of healing and peace more in the past few weeks than ever before in my life.  Call me weak in faith, but right now, I don't know how to hold on.  I just know I have to hold on.  I'm desperately hanging on by a last finger nail, hoping and praying that soon, VERY soon, I can see the beautiful piece of pottery that was sculpted and put into the kiln by The Master Artist.  Because right now I'm in the fire.  I find myself watching my sweet boy (we are in year-round schools, and right now my kids are all tracked out for 3 weeks, so I get to spend 24-7 with them!) day in and day out fight just to stay standing.  And I find the tears falling yet again... both with pride and admiration at the incredible fight and determination that he has to adapt and modify just to keep upright, and also with pain as my heart breaks for my sweet little boy who was handed a pretty shitty hand if I do say so myself.  I would give anything to take the hand he was dealt and face it myself.
Yet he never complains about it.  He just keeps fighting.  He falls, but he gets back up and tries again.
And I have to hold on to the fact that God doesn't make mistakes.  He is making and molding Kai's story into a beautiful piece of art too.  Somehow and in some way, God is going to use my precious son's story to touch lives.
And the kiln will be worth it.  It has to be.

So until then... I will hang on in the fire.

What's next?  I don't know.  We are waiting on a call back from Johns Hopkins to let us know when we will be going there to see the head of the neuro-muscular dept, as well as the head of the ataxia clinic there.  We have also been contacted by UCLA who is very interested in Kai's case and is working to figure out how they can also be a help and whether it would be beneficial for Kai to be seen by their ataxia researchers (who are the ones we got connected to thru the mom I got to speak with out in Cali!).  But again... it's a "hurry up and wait".  And until then, we have our schedule full of new specialists here at Duke and the MD clinic here.  So thru the fire we will walk...

My pastor gave us these verses on Sunday, and I've been holding on to them since:
"Fear not, stand firm, and see the salvation of the Lord, which he will work for you today... the Lord will fight for you, and you have only to be silent."  Exodus 14:13-14
I'm thankful He says to be silent... because right now, in the fire, I don't know how to pray.  I just know I have to hang on.

Kalia's (10) been singing this song a lot lately.  I don't think she really understands all of what we're facing right now, but oh that I could grasp the faith of my beautiful daughter as she sings this...
http://www.youtube.com/watch?v=zlA5IDnpGhc
"Our God is greater
Our God is stronger
God you are higher than any other
Our God is healer
Awesome in power
Our God.."

Moving forward

January 12, 2013

So the journey forward has finally begun.  That's a bittersweet movement, much more than I ever realized.  I think my brain was so used to walking into a doctor's appointment with Kai, and walking back out a few hours later with "I'm sorry ma'am, your son is just such a mystery, and we are going to do the following tests... but everything so far has come back inconclusive and we just don't know..."  Suddenly, after 4 years of "we just don't know", we walked out of a 3 hour appointment with a name of something they are 95% certain is at least 1 of the diseases that is challenging my little 8 year old's ability to function.  Suddenly, I had a LOT of processing to do, and a lot of detailed specific research to do, and at least a dozen new specialists that would suddenly be added to our team of physicians.
So Thursday, the new journey began.  I took Kai to Charlotte to the Charlotte Levine Children's Center to be seen by his peds neurologist there, as well as a new doctor... the one that if you remember a few months ago we went to see after a full yr wait, and they had put us on the schedule for the wrong dr... yep, that one. She's a Neuro-muscular geneticist.  That's a fancy way of saying she's a highly specialized dr in neuro-muscular and movement diseases.  After an hr of waiting (because the front desk said I wasn't in the system... even though I had the written letter from the dr stating our appointment!  But that's a whole other story for another day, and we'll just leave those details out for now and I'll let you know we DID finally get back to see both specialists, thank God, because it was about to get UGLY!), we were ushered back to see the 2 specialists we had driven down for.  They spent a full 2+ hours with us.  Thankfully, they had a tv in the room and let Kai watch cartoons while we talked.  They gave me at least 2 dozen pages of information, and walked thru each detail of the pages with me.  I was thankful for the written information, as I often find that I hear something and my brain hits a "freeze" mode and they continue talking and my brain has stopped hearing, so having the papers to see and be able to go back through was very helpful.  It wasn't a lot of new stuff that I hadn't already researched on my own in the 5 days leading up to the appointment, but I think just hearing it from an actual doctor and not just reading it on the internet somehow made it more real and overwhelming.  It just feels more real when someone says it to your face.  When they look at you and tell you there's greater than 2/3 chance that at least one of your other kids are carriers and will show signs and symptoms of the same disease, it's hard not to feel the tears well to the top.  When they tell you they don't know a single doctor who treats this disease but then hand you a list of research articles to look up the author's who wrote them and try to contact them to see if they would be of any help, that's overwhelming (especially when after doing my research, I found that they are in Italy, France, and Mexico!  Vacation anyone?!).  Somehow, hearing it aloud instead of reading it on a computer screen makes it all come to life.  You can't just wish you were in a bad dream anymore because there's someone actually there to pinch you and let you know it's all real.
The team in Charlotte also said they are wanting to continue to test and research Kai, as they also feel that he has an incredibly rare disease called Bethlem Myopathy on top of this Ataxia with Oculomotor Apraxia Type 2 (AOA2).  This Bethlem Myopathy has only been documented in less than 100 families worldwide, so VERY rare.  So they are going to pursue more testing for this as well.  The good in that is that IF he does indeed have this additional disease, it doesn't change the course of treatment... meaning there's no cure, and the only treatment to try to slow it's progression is the same as with AOA2... more therapies.  They now have the job of convincing Duke to send off Kai's remaining portion of his muscle biopsy that he had a year ago (it's flash frozen and saved at the lab) for the staining tests to determine whether or not he has this Bethlem Myopathy, and Duke is hesitant so they now get to debate each other on the necessity of this test.
They gave me a page long typed "to do" list of specialists they want me to research and try to contact, doctors he needs to have appointments set up with, foundations and data bases they want me to register Kai in, evaluations he needs to have at school, and referrals to other specialists they are sending us to.  I've decided I need a clone of myself to research and make all the necessary phone calls and appointments :)  I also think I will have earned some sort of new degree by the time all this is done!  YIKES!
So yet another chapter begins... I spent Thursday and Friday incredibly overwhelmed and not even knowing how to start.  I have some precious friends who have held me up through this, and every day that passes, I'm more and more grateful for the friends God's put in my path.  It's not every day that you find friends who will walk through the very dark times with you and not abandon you as a friend because they're tired of hearing your "drama".  So from long distance messages and phone calls, to nearby hugs and shared tears and listening ears, I'm incredibly thankful.  Today, it's a new day, and "His mercies are new every morning"... I'm very thankful for that!  Our VERY special genetic counselor at Duke called me at 4:30pm yesterday (Fri) to just check in and see how I was holding up and if I had any questions for her after my trip to Charlotte... and then I got an e-mail from our amazing PT here saying she was researching and working over this weekend (her time off!) to find out how best she can support him on the therapy end.  I know I've said it before, but I can't say enough how much that means to have such an AMAZING team on our side.  They make the dark days much easier!  It's a LONG road ahead, and definitely not an easy one as I know that I will watch  my little boy slowly lose the strength and abilities that he has worked SO hard to build, but one I know I can only take one day at a time... sometimes just one hour at a time.  And for today, I'm going to watch my little fighter enjoy the beautiful 70 degree sunshine of North Carolina with his brother and sisters.  I'm going to watch him run and play with his friends.  I'm going to listen to him giggle as he watches The Little Rascals.  I'm going to laugh as I watch him play Just Dance on the Wii with his sisters.  I'm going to listen to him fight with his siblings as viscous as he fights this disease that's attacking his body.  And I'm going to be thankful for today, and for the fight and determination that he's made of.  Today, I won't think about all the research that is telling me that he will be in a wheelchair within the next 10-15 years, because I know my boy, and I know he's a fighter.  I also know he has Jesus.  And with Jesus, anything is possible, so I'm going to hold on to hope and pray that my little boy fights with all he's got and defies the odds.  Today, we'll celebrate his brother's 4th birthday and forget about the pain for just a bit and smile and laugh and wrestle and jump on the trampoline and just "be" for a day...before the wildness of the coming week FULL of more doctors and tests and consultations and phone calls begins again.

ready... set... launch!

Ok, so for MONTHS I've been saying I would create a blog, but I'm getting kind of old, and teaching an old dog new tricks isn't always the easiest thing so this took lots of learning for me to figure out even the basics :)  But here goes... I'm going to try to do my best to keep our friends near and far posted on life... the good, bad and the ugly.  I was stuck for weeks (probably more accurate to say months!) on a name too.  Everything I thought of had the domain name taken, or just didn't sound quite right.  But I kept coming back to this one... Life Without Blinders.  It's a motto I've grown to try to accept over the past few years.  You see, I lived a good majority of my life wearing masks... pretending to be someone I wasn't.  Wanting to be someone different than who I really was.  Wanting people to think I had it all together, when really, behind the blinders, life wasn't so pretty.  And I slowly (yes, it took a LONG time!) realized that I wasn't the only one living with blinders to reality, and trying to convince not only others, but myself too, that life was pretty and put together and all fit nicely in a box with a bow.  It's an exhausting thing to try to keep up that facade though.  Really, it's more like living a lie... calling it living with masks or blinders just makes it sound prettier.  So one ugly night, I decided to let the blinders fall and be me.  The real me.  And I don't regret it for a minute.  I actually would call it freeing, both for myself, as well as for others, as I find it much easier for someone else to be raw and real with me when they know I don't have it all together and will be raw and real right back.  I haven't looked back, but instead I've decided to try to live each day without blinders.  The "what you see is what you get" type of living.  It's actually much easier that way too, because you don't have to pretend.  I just get to be me.  Take it or leave it, me.  And so if I'm walking through a beautiful garden and smelling all the roses, you get to walk that journey with me.  And if I'm in a storm, you'll know that too, and you may or may not choose to walk that journey too.
So right now... if you're just picking up my story... you may want to scroll back and start at the beginning of this blog posts and just catch yourself up a bit on my story... well, really, it's Kai's story.  It's a long one, so be warned.  But it's my story.  Without Blinders.  You'll read our moments full of hope, and others full of discouragement and frustrations.  Moments of joy and moments of pain.  But hopefully, in all of it, you'll see God's fingerprints.  After all, this is HIS story.  HE chose me to walk this journey... the good, bad and ugly. Is it a journey I would have picked for myself?  No, right now I can't say that it is.  One day, maybe, I'll share the entire journey with you.  But for today, my focus is my son.  My incredible fighter... my ninja as he likes to be called... Brayden "Kai".
So for those of you who have been following, encouraging, praying, supporting, caring, and loving on us from near and far... thank you!  And for those just now catching up... hang on tight because this ride is full of mountains and valleys, storms and rainbows, laughter and tears... all in one!  Welcome to my journey...

Answers = hope!

January 4, 2013

So today (Friday) came.  First, let me thank each of you who wrote me messages, sent me texts, prayed, and cried with me… especially this week.  I failed in writing each one back a personal thank you, but please know I deeply appreciated it and wish I had time to write each of you personally.  THANK YOU.  Thank you from the bottom of my heart especially for your prayers.  Today felt like it would never come! 

I’ll start at the beginning of the day, and although it was an incredibly long appointment (4 hrs WITH the team of doctors at Duke!), I won’t give you all the details… just the important ones you probably want to know J  Let me start with yesterday though… every time I got in the car, there was the same song on the radio… I know it was there for me as I felt like it was the longest 24 hrs ever yesterday!  It was a song by Meredith Andrews called “Not for a Moment”.  http://www.youtube.com/watch?v=XD0cvWImVjA&feature=youtu.be  Let me preface this by saying I’m not very good at listening to “uplifting worship” music all the time, so don’t be fooled.  Just this week, I’ve felt a nudge to turn my car stereo to KLOVE, which usually doesn’t come in well at all in my car, and I usually change quickly to country, or some quality 80s music J  But this week, it’s been clear all week.  Guess God knew I needed it, because this week has been full of songs that I’m certain were just for me.  So I held to this song yesterday. 

This morning, as I got into the car with Kai to head to Duke, a song by Kutless called “Even If” came on.  http://www.youtube.com/watch?v=HqOkZiOb9u0&feature=youtu.be  Again… just for me, but as I drove to drop off my girls at school before heading to Duke with Kai, the tears were already falling.  My overwhelmed heart seemed to just fall apart.  I found the song on YouTube on my phone, and just kept replaying it all morning as we drove the ½ hr drive (gotta love traffic) to Duke.  As soon as we arrived and checked in, we were taken to our special little waiting room for our specialist.  Within minutes, our lead doctor came out.  Her eyes were red, but I didn’t think anything of it.  Mine were too J  She excitedly said that she was running a bit behind and would probably be another 20 minutes, but that she couldn’t wait to see us because she felt that for the first time in nearly 4 years, she had some answers and some direction!  Then, her eyes filled and she quickly turned and left the room.  My eyes filled… again… and overflowed… again.  Would we really be able to have some HOPE today?!  After nearly 4 years of going in and out of literally hundreds of appointments with NO answers, ZERO, nada, not a single clue… and then today, we might have something?!  I didn’t really know how to process that little sentence she had just walked out with.  I guess I didn’t really have much faith walking in to the appointment.  I think I just protected myself, not letting myself believe because I didn’t want to have my hopes crushed yet again.  But suddenly there was something?!  I could hardly sit still the next few minutes.  I was glad for the little special needs girl in the waiting area with me who seemed to take an interest in me and asked me the same questions 45 times to make the next 20 minutes pass more quickly! 

We finally got to see the doctor, after what seemed like an eternity.  Let me start by telling you she is one of the most incredible doctors I’ve ever met… and I’ve met A LOT!  She genuinely cares, and she is fantastic at putting all the genetic garble that I don’t understand in the least into words that I can understand and make sense of.  She pulled up a chair next to Kai first, and chatted with him about Christmas and school, and then told him he could play his games (thankfully, Kevin had brought his Tablet so Kai could play games online!) while she talked to us.  She moved her seat over to sit by us and began talking.  First, she went through a full explanation of the test and what all the pages and pages of info that she had just handed me really meant.  She highlighted all the things they had ruled out … Ataxia Telangiectasia, Friedreich's Ataxia, Batten Disease, and Bethelem Myopathy to name a few of the major ones.  I think I started to finally breathe then.  Answers!!  I wish I could explain to you the emotions behind just not knowing… and then finally just having SOMETHING.  Even if it’s something it’s NOT.  SOMETHING.  For me, that’s movement.  Progress.  But she didn’t stop there either.  They had found a major abnormality in his SETX gene.  Don’t worry… we had NO clue what that was either.  It’s the gene that’s associated with ALS (Lou Gehrig’s Disease), but apparently the abnormality can be 2 different types… one is associated with ALS, and the other is Kai’s.  His is called Ataxia with Oculomotor Apraxia Type 2 (AOA2).  A DIAGNOSIS!!!!!!!!!!!!!  (yep, insert fighting back tears!)  We spent the next 2 hrs having her explain to us what this disease is, what it means for Kai, what it looks like, and what our next steps will be.  It’s an extremely rare genetic disease that there’s not a lot of research about, so it will be a challenge moving forward, but at least it’s moving forward!  It’s progressive.  No cure.  But treatment will involve Physical Therapy, Occupational Therapy, and Speech Therapy 2-3 times EACH every week.  Somehow, we’ll make that happen.  Right now I can’t think on that stressor… I am taking today to celebrate an answer.  The disease affects his vision, neuro-muscular ability, speech, fine motor control, and cholesterol (yes, odd I know!).  They have already set up 4 new specialist appointments… one for us to begin to get him help in the school (they will MANDATE the IEP that I’ve been fighting for 2 yrs to get!  As well as they will help fight for the modifications and adaptations he needs in the classroom like a personal laptop/i-pad (no more handwriting and this will help with the fatigue caused by looking constantly up and down from the board to the desk for work!!  This disease causes extreme fatigue with that eye movement, which helps explain his extreme fatigue after school each day!), they will send him to a Pediatric Dietitian who specializes in rare genetic conditions (the disease causes unexplainable high cholesterol… something we found in Kai 2 yrs ago but could never explain because of our VERY strict diet at home already), an eye dr who specializes in Neuro-muscular eye diseases, and a specialist at the Muscular Dystrophy Association clinic who will hopefully be able to help us with adaptations and accommodations to help Kai. 

After 2 hrs of explaining things to us and answers hundreds of my questions, they ordered more labs done today, and then she stood to leave and her eyes filled with tears again.  She grabbed me and hugged me tight and whispered in my ear… “we’re finally moving forward.  I’m so thankful for answers for you and your sweet boy.  We’re going to figure this out together.”  Then, she turned and asked Kevin if he minded if she could hug him too J Yep… this mama couldn’t hold back the tears.  Answers.  Finally.  And the cherry on top is a doctor who cares enough to explain and cry tears of frustration and tears of joy with a mom.  It felt like she stepped out of her doctor coat and stepped into her fellow mom shoes for just a minute as we let tears of relief and joy fall. 

Yes, this is only the beginning of yet another long road.  Yes, there’s LOTS more doctors visits to come.  Yes, we still have to fight insurance, and since it’s a new year, we start fighting all over again.  Yes, the expenses are beyond out of control.  Yes, there’s no cure.  Yes, God hears, listens, and answers (sometimes not so much the way we want either).  BUT… WE AREN’T STUCK!!!  We may still be in the middle of the storm, but today was a little break in the clouds that we desperately needed.  God heard and answered today… as He does every day… but today just felt a little more tangible.   

Ringing in a New Year...

January 2, 2013

Wow!  That feels very odd to write “2013”!  Hard to believe another year has already come and gone…. It’s definitely been one of tremendous challenges as well as incredible blessings.  I often struggle often to look back and see all the little rainbows in the middle of the storms, but they are there, and for that, I’m incredibly thankful.  For those of you who have prayed and followed our journey with Kai, you know that the past year has been a challenging one to say the least.  One that I could not have walked thru in my own strength.  One that has forced me to my knees as I have to depend on God alone for this journey He’s chosen for our family.  One that is far from over, and at times feels hopeless, but I find myself constantly coming back to the verse in the Bible that says "For I know the plans I have for you, plans to prosper you and not to harm you, plans to give you hope and a future." (Jeremiah 29:22).  When each of our kids were born, we chose a scripture to pray over them and claim for them.  For Kai, we chose Joshua 1:9 as his life verse, and I found myself praying it over him many nights as I put him to bed.  That scripture reads “Have I not commanded you?  Be strong and courageous.  Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”  I have no doubt in my mind God knew what we would face with our sweet boy over the coming years, and had us claim that verse for him 8 ½ years ago, as God also knew that I would need that reminder day and and day out on this journey we are on.  I love how God often uses gentle reminders to let us know He cares too, as often, in the midst of the storm, I find myself questioning that truth.  A few months back, on my birthday, a dear friend of mine who I had gotten to know over the past year dropped by a birthday gift for me.  It had been a rough day for me, but I’ve had a lot of those and have gotten pretty good at hiding them.  She stopped by to just give me a hug and drop off a gift, and when I opened her gift the tears flowed.  God knew my hidden hurt that day… and in her gift was a beautiful plaque with Joshua 1:9 on it.  She had no idea the story behind that verse for me, but that beautiful plaque now sits on my kitchen counter as a daily reminder for me, as I sometimes find myself overwhelmed with “what ifs” and fears of the unknown future that lies ahead in this journey with Kai and his “mystery illness”.  It was one of those little rainbows in the storm. 

Reading back through my own writings over the past year has reminded me of all the little rainbows of doctors appointments that were only made possible through miracles, songs that were played on the radio or at church at just the right time, trips that were given to us to provide a small respite of peace in the middle of the storm, meals that were delivered “just because” but saved my sanity on more than one evening, random care packages from far away friends that arrived on just the right day when I was walking through a dark valley, countless hours of babysitting by incredible friends while I raced around from doctor to doctor, an amazing team of therapists who genuinely care and are proactive with their research and innovative ideas to treat Kai’s unique case, an incredible sacrifice of $ from a dear friend who’s family felt God laying our medical bill struggle on their hearts, a very sharp pediatrician who found a curve in my 10 yr old, Kalia’s, spine during a well check and sent us to a specialist the next day who discovered she has a 6^th (yes, that’s an extra one!) lumbar vertebrae and they began to treat her that very day to hopefully avoid a brace and possible surgery, and thousands upon thousands of prayers that were said on our behalf… and that’s just scratching the surface.  All rainbows… glimmers of light to keep us moving forward in this journey.  For each of those, I’m forever grateful, as you will never know just how much every hug, tear, laugh, fb message, text, phone call, prayer, etc… meant to me and helped us walk forward.  

So 2013 is here… and with it comes new challenges and new storms.  As you know, we’ve been waiting since early this summer for results from a test called “Genetic Exome Sequencing”.  This test is hopefully going to be able to give us some answers, and should also be able to rule out and/or confirm many of the serious diseases that our genetic team at both Duke and Charlotte Levine Children’s Specialty Center have been looking into as possibilities for Kai.  I got a call the Friday night before Christmas from our lead specialist at Duke.  The test results are in.  She called from her vacation to let me know that they are in and she wanted me to know she was reviewing them, researching some of the results that came back with them, and she wanted me to come in for a face to face meeting to discuss them after the New Year.  So here we are… and our appointment with the team at Duke is scheduled for this week Friday morning.  Kevin and I will take Kai, and we will face that morning, praying for some clarity and answers to help us to be able to begin to move forward instead of feeling so stuck.  I think I’ve said it before, but when you are in a state of just not knowing anything, you can’t move forward.  You can’t process anything.  You are stuck in the tornado and can’t move forward in any way because you don’t know how to.  There’s nothing you can do to help or to explain to yourself or my sweet son what’s going on with his body.  Everything is unknown and unexplainable.  Nothing makes sense.  So just knowing something gives you a place to begin to process.  That’s what we’re praying for.  The doctor called to let me know the tests had come back “full of red flags”, which apparently means that there was a lot of “abnormalities” but she couldn’t tell me any of them as they had to run additional tests on the tests to either confirm the diagnoses that came back, or negate them as a false positive.  Those “tests on the tests” are all SUPPOSED to be back by this week Friday when we meet.  So we would definitely appreciate your prayers for us… for those tests on the tests to be back with some answers, for peace for us as we face whatever those answers may be (A few that are still very much on the table are the Ataxia Telangiectasia, Friedreich's Ataxia, Muscular Dystrophy, and Batten Disease… just to name a few).  I know I’ve said it before, but I can’t say it enough… my Brayden Kai is a fighter.  He perseveres.  He’s brilliant. He does not quit.  He is a strong 8 yr old… much stronger than any 8 yr old little boy should ever have to be.  But he’s also a child, and a sweet, sensitive child who is struggling to understand why he struggles so much and goes to SO many doctors appointments… all who tell him the same thing.  “We don’t know Kai.  You are just a mystery.”  A boy with a tender spirit that doesn’t understand why he has to wear a special “magic suit” that takes a ½ hr every morning to put on, and braces on his feet to keep him standing.  And his mama can’t give him any answers.  All I can do is hold him, cry with him, and tell him I don’t understand either but God chose him out of all the other boys in the world to be extra special.  But inside, behind my blinders and walls, it breaks my heart.

So that brings you up to date… as I write this, it’s Wednesday, January 02, 2013.  Friday is our appointment with Duke.  And remember that specialist that we were on the wait list to see in Charlotte from LAST December (2010), and then they goofed and brought us down to fill a “canceled appointment” spot and it was with the wrong doctor, only to put us back on the yr long wait list?!  Well, today, because of my persistence in calling literally every other week since September to fight them making me wait another whole year because of THEIR error, they called to tell me that they have Kai on the schedule to see the RIGHT doctor… NEXT WEEK!  So Thursday of next week, I will head back to Charlotte with my little fighter and see a new Neuro-Muscular Physiology Geneticist in Charlotte (there’s only 3 of her specialty in the whole US!).  Prayers would be appreciated for that as well.  With a new year, comes a whole new insurance fight.  Our deductible starts all over… and is WAY higher this year thanks to our fantastic government and healthcare systems (insert sarcasm).  With that comes new stresses and new fights.  We no longer have our attorney with Duke (she graduated so closed out our case, unfortunately), so the fight is on me.  So as we begin another year, I would appreciate prayers for patience and strength and wisdom.  I feel sometimes as I should qualify for a degree as an attorney, nurse, neuro muscular geneticist, accountant, and counselor just because of my daily fight and knowledge I’ve been forced to research and learn J  As a lot of you know, I was diagnosed 14 years ago with Systemic Lupus myself.  God’s been incredibly good to me as I’ve been able to keep it from any major flare ups for over 10 years now.  But stress is a major trigger, and what had me hospitalized with it when I was in college.  I would love prayers that I can continue to keep it under control when I feel like my stress level is higher than ever right now, and I feel my body on the verge of a flare.  Please pray for my heart to be able to somehow just rest, knowing that HE is still in control, even when I feel like everything is out of control.  Please pray for my other 3 kids… Kalia Brynn (10), Peyton Ke’Aloha (6), and Thayne Kekoa (4 next week!).  I don’t recognize them enough for all they go through as a part of this family fighting for the health of their brother.  They go to countless doctors appointments, therapies, blood draws, hospital visits, and listen to hours upon hours of phone calls as I fight insurance and doctors and schedules.  I don’t give them enough credit.  It’s not easy on them either.  And with answers will be some tough conversations about the road ahead and what’s to come.  So your prayers are appreciated!

I’ve rambled long enough… but in all sincerity, thank you for your encouragement, love, support, help, and most of all prayers.  I pray this New Year is still full of adventure, and there’s always lessons to be learned, but also moments where we can find the rainbows in the storm. 

Praying for answers….