Gifts

May 3, 2013

So once again, yes, I let a whole bunch of time go by without writing.  Once again, the incredible chaos of this roller coaster ride of life filled my hours, days and weeks.  But I'm thankful for that time.  The past few weeks have been some of the most challenging, yet incredible weeks of seeing God's fingerprints.  So buckle up and hang on as I fill you in on the ride...
So I left off last time filling you in on our California trip.  We arrived home to jump right back in with both feet running to our schedules of doctors and specialists and loads of other commitments with our other 3 kids.  I have to pause here (in my scattered thoughts... it'll make sense later.  promise!) and tell you about this amazing constant I have in my life.  Every week, Wednesday afternoon, I meet with this amazing group of girls to share life, pray, and dig into the Bible.  It's time that's precious, and I've grown to love each of the girls with my whole heart.  They are the most sacrificial, genuine, raw, real, loving, fun girls who love Jesus too, and we're all walking this journey called life together.  One of my dear friends, who has listened to me vent and cry over this journey with Kai more than any one person should ever have to do, decided about 5 months ago that she was going to organize 1 meal a month for our family from our circle of girls.  Can I just tell you how AMAZING it is to have one meal every month brought piping hot and SO yummy to your door?!  Honestly, it's an incredible blessing to have just one night that I don't have to stress making my kids dinner after our wild day of work, school, therapies, doctor visits, mom duties, and everything else in between.  They have also challenged me in some incredible ways.  We've been studying the death and resurrection of Jesus, and all the incredible suffering He went thru the past few weeks leading up to Easter.  I know the story of the cross.  I've heard it a million times.  But this time, it hit me hard.  I ask a lot of "why" questions right now.  There's just some things I don't understand.  And I don't think for a minute that those "why" questions are wrong.  But I've come to see just a tiny glimpse of Jesus' sufferings, and how He went thru it all so that He could 110% say with total and complete accuracy that He understood and He'd been there.  I'll never be able to fully understand, but I do know He felt alone.  He felt abandoned.  He felt rejected.  He felt the pain, both physical and emotional, of losing ones He loved.  He felt betrayed.  There wasn't a feeling He didn't personally experience.  So He gets it.  He knows my pain, and it hurts Him too.

Those were significant truths I needed to see these past few weeks, because quite honestly, I was at the end of my rope and beyond exhausted and burned out.  I am a pretty raw person, and I hold nothing back in saying that I was really struggling to believe that a good God would allow a mother to feel such pain as she watched her child suffer, with no known treatments, and no known cure to a disease that there's hardly anything known about at all.  And then we followed up the study of Easter with a new study we're working thru now... it's called "One Thousand Gifts... a dare to live fully right where you are" by Ann Voskamp.  I read the book a while ago, but honestly it was pretty deep for me and hard for me to grasp (I'm not a very deep reader... not enough attention span for reading!).  But this time we're doing the study.  And I know it's what God had in mind just for me to help to change my attitude of discouragement.  It's on grace, thanksgiving, and joy... Eucharisteo.  So I said this would make sense... all my garble... and here's why I open with this.  I'm working to change my focus to looking at the incredible gifts I already have and being thankful for them in the moment, not fearing the future.  That's much easier said than done, and no, I haven't come close to mastering it, but days like today, I have to hold on to things I'm thankful for, so I'll start this post with some incredible thanksgivings of God's fingerprints the past few weeks...
I mentioned the meals.  Seriously, and fellow moms can appreciate this, they are SUCH a blessing.  Due to a commitment I made a year ago to help coach what has grown to be an incredible program to help women complete their very first triathlon, my work schedule suddenly quadrupled, not to mention the client load I already had (for those who don't know, I work at the Y as a personal trainer, swim coach, and USA certified triathlon coach... my passion!).  I'm incredibly thankful for the extra income it's provided for our family and for the medical bills, but it definitely added a big stress to my already wild schedule, so meals have been HUGE!  Kevin works incredibly hard to make ends meet, but because of the nature of his job, he also travels most weeks for work, so evenings are overwhelmingly tough sometimes.  Oh yeah, even pizza delivered to us after a WILD week by a dear friend who knew I was struggling!
Then there have been these INCREDIBLE blessings of encouragement letters, text messages, Facebook messages, phone calls, and handwritten notes arriving on just the toughest days I've needed them.  Some have even included incredible sacrifices of generosity that I couldn't have in my wildest imaginations asked God to provide... gift certificates for meals, gift cards for iTunes to get Kai something new to do while he's visiting so many doctors, and AMAZING monetary gifts to help with our ever growing medical bills!  Even things like my kids getting "gifted" the season of soccer so that they could all play something they love but that we just didn't have the money to be able to do this season if it weren't for a dear friend who's walked a tough road of her own and understands first hand the stress of growing medical bills so provided the season to my 3 more than thrilled little soccer junkies!  And Hope Reigns, a free horseback riding therapy that has been an incredible blessing to Kai!  Wow... speechless.  And honestly, each one arrived on some of THE toughest emotional days for me, so such a little whisper of my Father letting me know that He knows and He cares.

Then there has been incredible friends who have helped research and contact agencies and foundations to try to help me figure out what things are worth chasing and what's not to try to best facilitate the needs that Kai has both now, and will have in the future, especially with expenses looming of moving (finding a more accessible home for Kai's growing needs), supplies he will eventually most likely need (walkers, wheelchairs, ramps, etc), and even friends helping me with creative ways to do therapies with Kai at home since I get burnt out with it on a daily basis.  Again... His fingerprints... that precious time I didn't have to research was sacrificed and gifted to me thru someone else's help.
And then there's the INCREDIBLE honor given to Kai as he was spotlighted by our Wake County school board, and was presented with the Wake County Spotlight on Student Award for 2012-2013.  "This award is only given to individuals who go the extra mile and expend that extra energy to achieve success..." (written by the school superintendent).  Kai was honored at the Board of Education meeting right after we got to celebrate his 9th birthday!  His teacher had nominated him without us even knowing, and he was chosen by the school board out of kids 3rd - 12th grade to be honored for his hard work.  It was an emotional evening, full of proud tears as my boy was recognized with a speech given about his situation, and how he had been nothing short of an over-comer and a fighter with an incredible attitude and determined spirit.  Things like this make a mama proud, and overflowing with thanks that people DO indeed recognize the struggle and the fight my little man goes thru daily.  Fingerprints...
 

(above- Kai with the superintendent... below- his award!)

 (above- Kai with his amazing principal and assistant principal... below- Kai with his INCREDIBLE teacher)

So I know, I know ... you're tired of my list and my pictures :)  And yes, I intentionally left today's doctors visit to the end because I'm still working on processing it all and finding the joy in today.  So today was a visit that has been scheduled since January 4, the date of Kai's initial diagnosis.  It was a BIG one.  We met with THE head of the MDA (Muscular Dystrophy Association) clinic.  I know, you're already asking why the MDA when he doesn't have Muscular Dystrophy.  The nutshell is that the MDA was names ages ago when all they saw, treated and helped was MD patients.  But they've broadened their umbrella now, and now they see a few other diseases, including a handful of types of Ataxia.  (remember, Kai has Ataxia with Oculomotor Apraxia Type 2... aka AOA2).  We knew going into this appointment that the MDA didn't recognize AOA2 as one of their diseases under their umbrella of coverage, but our prayer was, and still is, that they would accept Kai as an "exception" to the rule since his disease is so incredibly rare.  IF they were to accept Kai as a patient on the MDA approved list, then as Kai needed "supplies" (walker, ramps. wheelchairs, etc), the MDA would provide those to Kai to "borrow" at no charge.  HUGE.  Those things aren't cheap in case you were wondering!  :)  So... today Kai and I went and met with Dr. Smith, THE head of the MDA clinic at Duke.  He was wonderful.  He had obviously done his homework and researched a lot about Kai, his history, his tests, his other doctors... everything.  You name it, he had researched it.  He was incredibly personable too, which if you've visited any specialists, you know this is an incredibly rare gift as most of them have all brains and zero bedside manner.  He was genuine and cared and listened and answered in terms I could understand.  Amazing.  But he couldn't approve adding Kai to the MDA approved list.  Apparently the MDA has had a significant cut in their budget and grant money available, so they've had to crack down hard, and right now, he has no power to add Kai to their approved list.  Ugh.  So yes, this is incredible frustrating and discouraging, as it leaves an overwhelming future of needs ahead, but I also know that God is bigger than this.  He's provided up until now, so I know somehow and in some way He will continue to provide.  I'm also incredibly thankful for Dr. Smith and his heart, as he's agreed to keep Kai on as one of his patients, even though he's not an MDA approved one.  This is HUGE!  Dr. Smith is a highly specialized Neuro-muscular specialist, so being one of his patients will help us be able to eliminate at least 3 of Kai's other doctors as we can get all 3 of them in just 1 Dr. Smith!  

So... tonight I'm working hard to focus on the gifts I have.  I won't pretend I'm good at it, but I will say I'm trying, and some days are better than others, and some moments better than others... for tonight, I'm thankful for His fingerprints.

Kai celebrated his 9th birthday with some awesome friends... then an overnight beach trip with his siblings (thanks to some freebie nights earned bc of Kevin's constant travel)!

history in the making

Yes, I will start by apologizing that I am WAY behind on blogging!  Life just seems to be WILD non-stop without a minute to breathe and sit to write, and when I do have a minute, I'd rather be sleeping than writing :)  But tonight, I'm committed to taking a few minutes to catch everyone up since I feel like I've been writing the same msg to everyone who was anxiously waiting word on our doctor visit to Cali!
Let me back up a bit... the week before Kai and I left for California, I had my final fight with the school regarding the IEP (individualized education plan) that I've been fighting to get for Kai for over 3 years now.  Consistently, the school board has denied the request stating that with no diagnosis and a child that is very intelligent, he doesn't need one.  Each and every time we met, I fought long and hard, armed with doctor's letters, testing results, and everything else I could think of (even an attorney from Duke one of the times!) to try to prove to them that my son needed the IEP because he wasn't performing at his potential level, and every day was a struggle that he would fight thru to be "normal", and then would come home and cave in with tears and extreme fatigue.  See, Kai's disease makes EVERYTHING you and I do 100x more challenging.  Just to stay seated in a chair, or standing in a line, or even sitting upright on the floor requires an incredible amount of energy because his muscles just don't want to work right.  Actually, it's not so much that they don't want to, but there's a misfire and they can't do what the brain tells them to do.  Even eating is challenging, causing incredible messes with every meal because he has to focus on staying seated in a chair, as well as trying to make the muscles of his mouth work properly to chew and swallow.  So saying he has to fight just to survive is not an exaggeration.  He could easily throw in the towel and say it's just too hard and he doesn't want to do it anymore and needs someone else to do it for him.  But that would be quitting.  And that's not my Kai.
So back to the IEP... I've been fighting, and over and over, I have gotten denied.  He was finally approved last year for some adaptations (elevator use instead of stairs, non-slip seat cover to help keep him from sliding off when he lost his balance, etc), but still no IEP.  The IEP would allow for modifications and adaptations to every area of his school day... like one on one testing so he can use the bathroom as much as needed and stand, sit or lie down depending on how his body needs to adjust to be able to focus, a scribe to write while he speaks bc holding a pencil is incredibly challenging (not to mention trying to keep balanced in a chair AND hold the pencil to write legibly), frequent breaks to allow him to rest his focus and collect himself, some physical and occupational therapy in the school setting, modified seating so that he can lean on an arm rest to balance, a personal laptop at his desk so he can type even just his short answer responses on worksheets so he doesn't have to try to write them... these are just a few of the things I was fighting for.  When we finally got a diagnosis in January, I armed myself with a whole new team of doctors willing to fight for the IEP for Kai and began the fight yet again.  And this time, after 3 months of testing and fighting, and much prayer from a LOT of people, we finally won!  That was a HUGE victory for sure, because now that he is approved, by law, ANY school system that he is in from now thru his high school graduation is required to adhere to his individual plan, and we also made sure that his plan could be changed at ANY moment I requested since his disease is rapidly changing, so that is also a blessing.

So...finally the update you've been waiting for!  California!!  

Let me back up and say that if it weren't for some INCREDIBLE friends, the trip to California would have never been possible.  A lot of you are probably wondering why in the world we would need to take a trip all the way across the country to see a specialist when we have Duke and UNC hospitals right here in our backyard.  Well, they are incredible hospitals for sure, but they are also limited in their expertise, and since Kai has been diagnosed with a disease that only 20 other people in the entire United States have ever been diagnosed with, there's not a lot of specialists in the US, let alone in the world, who even know anything other than what you read on google.com about the disease.  See Kai was diagnosed on January 2, 2013 with Ataxia with Oculomotor Apraxia Type 2 (AOA2).  Problem #1 is that Duke had NEVER seen a patient with this diagnosis, and the information they were giving us was just google.com articles because they didn't know what else to do.  Problem #2 was that since this disease is SOO incredibly rare, they didn't even know if he really had it or if he had something else and they were just settling for this diagnosis because it has no specific diagnostic test but just a series of tests and symptoms that all have to line up with the correct answers to point to this diagnosis, so by mid February, we were at only a 50/50 chance that this was the correct diagnosis and they were looking at going back to square 1 of testing all over again... what we spent the past 3.5 years doing, not to mention over $60,000 in out of pocket expenses!  So I began my quest to be smarter than the doctors here.  I began researching, and calling, and e-mailing EVERY doctor's name that I could find on every possibly research article on AOA2 that I could find.  It was slow beginnings at first, but slowly I started getting responses... first from doctors in France, and then from a researcher on AOA2 in Minnesota, and then a parent who has 3 children with AOA2, and finally a doctor and specialist in AOA2 in California.  See, there's only 3 researchers in the US that are currently educated on and continuing to do active research on this disease.  Most doctors have never even heard of it, let alone seen a patient with it.  And when I finally connected with this doctor in California at UCLA who is not only a researcher for AOA2, but also treats 3/4 of the patients in the US with this disease, I knew we had to go see him.  Even he had his doubts that Kai really had AOA2.  Up until Kai, the youngest patient in the US diagnosed with this incredibly rare degenerative neuromuscular disease was 17.  Kai is only 8, and has been noticeably displaying symptoms for nearly 4 years now.  

So Dr. Fogel offered to see Kai, if we could just make it out there to UCLA.  Remember earlier I mentioned how much we'd already paid out for medical bills?!  So yes, hiking out to California to see a doctor wasn't really in the budget, not to mention our other 3 kids that needed to stay home and be taken care of.  So enter our angels... my mom offered to fly down and tag team to help Kevin with the other 3 kids, and despite coming down with a very violent flu while here (another story for another day!), she was able to help keep the house under control.  Kevin filled in the gaps, and my friends Lisa, Eli, and Leslie jumped in and loaned a hand when my mom had to leave early!  And my incredible angel friend Carla, who works for Jet Blue, offered to give Kai and I two of her precious buddy passes that she is given as a "job perk" each year.  She's only given a very limited few per year, but she didn't even pause to think before offering two of them to us!  Then, we had an incredible load of friends in California offer us places to stay!  We ended up rotating houses each night, staying with a cousin and his wife and 2 kids that I hadn't seen in 13 years, staying with a precious friend and her parents and family that I hadn't seen in over 3 years, and even crashing one night in a bachelor pad of my youngest brother's friends from high school that I'd never met before showing up at his door :)  Kai and I made memories together for sure!!  I made sure to surround the doctor's appointment with fun... trips to the beach, Santa Monica Pier, lots of fun burger stops at In N Out and Jack in the Box, ice cream at Diddy Riese, sleepovers with his long lost buddy Cameron, and the icing on the cake was his trip to Legoland as his early birthday present!!  Even that, God provided us with buy 1 get 1 coupons to be able to afford to go!

So surrounded by fun, we had the doctor's appointment.  Dr. Fogel spent the better part of 3.5 hours with us.  He examined Kai, asked a lot of questions, had already done TONS of research on Kai's situation from the medical records we had sent over, and he took a look at all Kai's MRI and CT scans that we had brought with us on digital copy.  He was incredible.  He explained everything he did, everything he saw, everything he had noted on Kai's previous tests.  He crossed every t and dotted every i.  Then, he delivered his news.  We were history in the making.  He is 99.9% certain that Kai DOES indeed have AOA2.  Not only is his 1 of only 20 documented cases in the US, but Kai is THE youngest person EVER documented in the US with this disease.  He continued on to spend well over another hour answering my questions and helping us to understand what this means.  Since he has 15 of the 20 AOA2 patients, he knows what he's seen, and is the best person possible to answer our questions and help us monitor Kai's progression.  

I feel like I need to pause and say that although the news hit me all over again, but somehow in a totally different way from the first time, there's a few things I'm thankful for.  First, is that for now, Kai won't have to go thru any more testing.  Everything from here out with be just to monitor progress, unless something else random and rare begins to present.  After 4 years of non-stop testing, THAT is huge.  Second, the doctor looked at me straight in the eyes and told me that if I had not persisted in taking Kai to therapies (PT, OT and Speech) consistently for the past 3.5 years now, and also done therapy on him from home, he would absolutely without a shadow of a doubt be using a walker to walk, if not fully in a wheelchair by now.  I wish I could explain to you the relief and feeling of "at least I did SOMETHING right" that crashed over me in that moment as he was talking.  As I fought back tears, I quietly thanked God that all those MANY weeks that I just wanted to throw in the towel on spending 3 hours a week in therapie , for $300 per week out of pocket expenses (that's well over 200 hours of therapies and thousands of $s of expenses!)  just to take him there... they all were worth it.  As a mom, the whole trip was worth it to hear that I had done SOMETHING right to help my little man fight harder and longer.  

So our history maker journey continues.  Currently, there is no cure.  AOA2 is a very degenerative condition, where Kai's brain will continue to function at an extremely intelligent level (much like ALS), but his body will continue to deteriorate and weaken in it's response to his neuromuscular signals until eventually he will be confined to a wheelchair needing care around the clock.  But I'm refusing to stop at that.  Because it's so rare, there's VERY little known about the disease, and very little research being done.  So I will make it my new mission to inform and make people aware, and begin to raise money not only to help us support Kai's ongoing and ever increasing medical expenses (therapy will forever be a weekly thing, eventually being multiple times per week!), and also looking to raise money for research to be done on AOA2 to hopefully and prayerfully find a cure one day.  So please feel free to share our story and pass it along!  It is my prayer that somehow, thru the incredible pain of this journey, that we would continue to be able to see God's fingerprints in not only our story, but in how God uses Kai's determined spirit of a fighter to encourage and strengthen others.  

So how can you pray... please cover Kai in your prayers for his struggles with this diagnosis.  He knows and is understanding more and more of what it means every day.  He is brilliant.  I don't say that because he's my kid.  He really is (trust me, he's had all the tests done!  lol).  So he knows that his brain is telling his body to do something but his body isn't responding the way he's telling it to.  It's causing incredible struggles with depression.  In fairness to him, I'm going to leave it at that, but please pray for him, and pray that we would have wisdom in walking beside him on this incredibly tough road.  I don't have answers for him.  In fact, I'm struggling with the same questions of "why" that he is.  This is a lifelong diagnosis, so the questions are big and probably will never be answered this side of Heaven.  But we both have to move from the grief and anger stage, to acceptance   Whatever that may look like.  And that's a lot easier said than done. 

Not Parts, but the Whole

February 20, 2013

The past few weeks have been rough.  REALLY rough.  So rough I had found myself angry with God.  Wondering why... Why Kai? Why me? Why this disease that has no definitive diagnostic test and then has no answers?  What kind of loving God would allow this mess to happen to a family, any family, not just my family.  I had watched Kai struggle, facing one of his "slumps"... see, his disease seems to go in waves of good and bad times.  What I mean by that is that he seems to plateau for a bit, then everything seems to fall apart even worse with his balance, his coordination, his speech, his muscle control, etc.  It stays bad for a few weeks, and then usually seems to come back up to a plateau ... not quite as good of a plateau as before the slump, but at least a bit better than at the bottom of the slump.  Then the cycle repeats.  This time, the slump seemed a lot worse.  I don't know if stress plays a part, or if the disease is just taking more of a toll, or if I'm just more aware of it each time, but it's definitely been a tough slump.  I want to try to respect Kai's privacy to an extent and not embarrass him at all, as I know one day he may look back and read his own story via my blog posts, so I won't go into detail on the events, but just understand it was a daily struggle in every way... physically, emotionally, spiritually, monetarily, etc ... it was rough.  And to see my little guy so discouraged and frustrated with himself made it even worse.  I was angry.  Didn't God promise He wouldn't give me more than I could handle?  Well, I'm pretty sure He got me mixed up with someone else because I'm pretty sure I'm over-maxed on my stress levels.  I was hurt.  Did God not see how bad this was hurting my little boy?  Didn't He care?

I wrestled with this day in and day out, trying desperately to hold on to my head knowledge that HE really did care.  That HE really did love both Kai and myself.  But somehow, it felt like I couldn't get it.  It was affecting my other kids BIG time too.  Didn't God see that?  If He could put the billions of stars in the sky every night and call them out each by name, why couldn't He just say the word and take away the pain from my little boy?  Why not take it from my other 3 kids who were watching from the outside and hurting so bad in each of their own ways on the inside?

So Sunday night, as I sat alone at my computer checking e-mails after my kids finally crashed for the night, I opened a message from my dear Aunt.  She's walked a tough road herself, and is facing a painfully tough time right now as well.  She sent me a link to a message that she had listened to earlier that day, and had spoke profoundly to her soul, and she hoped it would encourage me as well.  So since I haven't been sleeping at all lately, and was alone in the quiet and dark, I clicked the link on and figured I'd listen while I kept playing online.  Little did I know that God had that podcast on there for me.  If you're facing some tough stuff, I challenge you to listen... it's pretty awesome.  It's by Eric Sandras, and he wrote the book called "When the Sky is Falling".  If you want to listen, the link is http://www.themeetinghouse.com/teaching/archives/2013/when-the-sky-is-falling/
It was what I needed that night.  I will share The Merton Prayer at the end of this post, but on the podcast, he closes with that prayer, and as I read and re-read it, I couldn't read it and believe it, but I found myself desperately wanting to believe it.  Every word of it.  Even the part that said "I will not fear..."  And as I sat in the dark at my computer, I told God that I couldn't do this anymore.  It was too tough for me to handle.  I knew that He really did have ultimate control, so I really needed Him to do something.  To show up.  To just let me know He cared and that He still loved me.  To let me know that somehow, in all of this mess and thru all of the storm, there was a purpose and a reason that I couldn't see.

Fast forward a bit until today.  Wednesday.  Well, let's backtrack a bit... to over a year ago.  Our pediatrician, who I LOVE, and has walked this mystery road with all of my kids and I since the very beginning, had told me well over a year ago about this Holistic Specialist that she really felt I should see with Kai.  See, for those of you who know me, you know that I'm ALL about some natural remedies, natural and healthy eating, and homeopathic treatments.  Well, Dr. Haynes knows this about me too, and she said she just knew I would love this girl.  That was a year ago.  I resisted, and never called.  In January, I had gone in for a consult with Dr. Haynes.  This time, I was in tears.  Having just gotten our "diagnosis" for Kai, I was a mess.  I was trying to wrap my head around it all, and she was trying to help me in the best way she could, even though neither of us knew much of anything about the new diagnosis.  Yet again, she recommended that I go to see "this girl".  She continued by saying she could see my faith in all of this over the past 4 years, and she knew that without my faith in a God who had it under control, she was certain I couldn't have made it this far in our journey.  She asked me to at least contact the holistic specialist to see what I thought.  So I promised I would.  And that afternoon, I e-mailed Laura Bowen to see what she had to say.  She offered to see Kai as soon as she could fit him in.  And she told me she only charged $80 for the visit, which I should plan on lasting 2 hours.  Something in me said to go ahead and set the appointment, so I did.  After all, most of Kai's doctors charge $400+ PER hour, not to mention whatever they charge for any tests they run... so for $80 for 2 hrs?!  That seemed too good to be true.

So back to today... (sorry, I'm all over the map!)... today was my appointment with Laura Bowen.  She's a certified Holistic Specialist.  And although I'm all into holistic treatments, I'm also all for doctor's that have medications and information that uses modern medicine as well, and I feel that there's a time and place for everything, and given Kai's struggles for SOOO many years, I have to be honest, I was very skeptical going into our appointment today.  She works out of her home, so we drove out to her house, about 30 minutes from our home.  Kai and I walked in together.  She immediately greeted us with a warm hello, and showed Kai some books of her kids that he could read while she gave me a few papers to fill out.  They were really different than any other medical paperwork I've ever filled out.  The first one was a disclaimer that I had to sign.  It stated that she believed that we as humans were created by God as unique individuals, made as a whole, not evolved over time.  God created us from dust, not just into parts, but into a whole person.  WOW.  I'm pretty sure my eyes were saucers before I even finished reading the rest of the Bible verses she had on that disclaimer.  I've NEVER walked into an office and had a doctor offer a single verse from the Bible to me, not to mention her whole practice based on it!  The second page was just Kai's basic contact info, and the final was any medications he's currently on as well as major concerns I was having with him.  It only took about 5 minutes to fill out, and when I was finished, she gathered the papers from me, and then proceeded  to give me a copy of her mission statement (which I wish I could type out fully for you as it's THAT amazing!).  Then... we began.

Laura started sharing a bit about her practice, and then stopped herself and asked me if I minded if she pray over our session together.  I was totally taken off guard!  I mean really... how many times have you been to the doctor, and they ask you if they can pray over your appointment before you get started??!  I think I mumbled a startled "yes", and she closed her eyes and began to pray.  She prayed so beautifully.  Just like she was starting back up a conversation with her friend.  Then she paused and was silent, and then looked at me and said "Heather, I feel like God's laying on my heart some things He wants you to know if you don't mind me telling you?!"  I think I mumbled another stunned "sure", and then it was silent again.  She then continued to speak to me what she felt God was laying on her heart for me.  She didn't know me from Adam.  She knows nothing about me.  She knows nothing of my struggle or my past few weeks especially of walking thru hell.  She knew nothing.  Yet the words she spoke to me that she felt God laying on her heart HAD to be nothing short of words from God for me.  I wish I could recite back to you all of those words.  I wish I had hit "record" on my phone to keep hearing them over and over again today.  But I can't remember a lot of them, only that I felt the tears begin to fall and found myself weeping there in the office of a woman I don't even know and had only met 15 minutes earlier.  And I do remember she kept saying this in her words that God had given her... "I love you Heather.  I have you in my hands.  I've always had you in my hands, even before you were formed in your mother's womb.  And I have Kai in my hands too.  I love you.  And right now, as the storms are raging and the winds are blowing, look up.  I love you.  I haven't let you go..."  I wish so much I could remember the rest.  It was for me.  It was simple truths that I know in my head, but just struggle with in my heart sometimes.  And today, I needed that reminder.  When she finished praying, I felt like I could just pay her and leave :)  but I didn't.  We stayed... for another 3 full hours!

I won't bore you with all the details of the next 3 hours, as I've already rambled long enough, but she was incredible.  She looked at Kai as a whole, from scratch, not just to treat his symptoms, but to discover the first causes of his physical issues.  And in 3 hours, she was able to tell me more than any doctor in 4 years could tell me, and Kai didn't even have to have a single needle poke or blood draw! She is starting him on a VERY large amount of supplements, as well as having us start a VERY strict "diet" plan.  I say the word "diet" loosely, because I hate that word as it's got such a negative connotation.  It's going to be more of an eating plan to completely detox and flush his body so that we can rebuild and try to foster a healthy internal system where his central nervous system and organs and muscles can function properly together.  Thankfully, he's a kid with an incredible attitude towards taking supplements, and doesn't complain a bit.  Tonight, as he chugged down his first solution of Colloidal Silver, and then baking soda water, and then 4 other supplements that are his dinner routine, he made a face and then as my other 3 kids stood watching him (with looks of total disgust!), he finishes and cringes and then smiles and says "these are to make my muscles work better since I'm a lot more wiggly than you are!"  Then he headed off to take his "therapeutic bath" in his special solution ... water, epsom salt, baking soda, and borax!  Yep... sounds crazy I know, but it's a therapeutic detox, and incredible!

So... that's the nutshell.  I will be ordering the 18 other supplements that he is going to be taking tonight, and those will be in within the week, and then we will begin our new routine of these new "things".  Do I think it'll cure Kai?  No.  Maybe I have a lack of faith in that, but I can't honestly say I think it'll cure him.  But I DO think it will help.  And I'm willing to do ANYTHING to help him.  And to me, it makes sense to stop looking at just the individual parts of Kai's symptoms, and to start looking at the whole of his body and the causes behind his physical struggles rather than just addressing the symptoms.  So we'll see... call me crazy, but today, I'm finding peace in the middle of the crashing waves.  HE's got this.  And HE's never let me go.

The Merton Prayer

MY LORD GOD, I have no idea where I am going. I do not see the road ahead of me. I cannot know for certain where it will end. Nor do I really know myself, and the fact that I think I am following your will does not mean that I am actually doing so. But I believe that the desire to please you does in fact please you. And I hope I have that desire in all that I am doing. I hope that I will never do anything apart from that desire. And I know that if I do this you will lead me by the right road, though I may know nothing about it. Therefore I will trust you always though I may seem to be lost and in the shadow of death. I will not fear, for you are ever with me, and you will never leave me to face my perils alone.

• Thomas Merton, “Thoughts in Solitude”

*For those wanting Laura Bowen's info (just tell her I sent you!): 

Christian Holistic Care, LLC., 919-280-8437, christianholisticcare@gmail.com