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

spinning and trying not to be dizzy

February 14, 2013

So I'm going to warn you now, this will probably be a journal entry of confusion, but I'll keep it short... promise :)  This week has been a whirlwind.  Crazy.  Out of control.  One where you spin and just close your eyes and hope the spinning stops soon.  It started with a WILD weekend of class for me, which I loved by the way.  It was my passion...an extension of my triathlon coaching license, while I got my certificate to personal train.  But it was a LONG class, so yes, I started the week tired for sure!
Monday, started off rough.  I got an e-mail from Duke with a bill from our very first visit of 2013 with our lead specialist there.  $6500.  Yes, you read that right.  $6500.  I nearly puked.  For those of you who have been friends with me for a while on Facebook, you know how much I despise insurance and feel like it's a waste of my money.  This just confirmed it to me.  Since we haven't met our deductible for 2013, a visit to the doctor costs a semester of college instead.  So as I drove, frazzled, to Duke, I got another message from a friend of mine.  She wanted to know if I was going to the Y (my workplace) that day.  My day was already in a tailspin (I had ran out the door flustered by my e-mail from Duke and had forgotten to brush my teeth so had to stop to brush at my son's preschool... thank God I keep a spare in my car!!), so I quickly responded to her saying that if I got lucky, I would make it there but for now, I was headed to Duke which would most likely take a good portion of our day.  I took Kai to a Neuro-ocular specialist at Duke... that's just a fancy way of saying an eye dr who specializes in the neurology part of the struggle.  After a few hours with the doctor, we left with her saying that Kai had NO, zero, zilch, none, big fat ZERO, signs or symptoms of the oculomotor piece of his diagnosis.  So yes, this only added a question mark to his diagnosis.  Is it really the right diagnosis?  So yes, I contacted our doctor at UCLA again, and he reassured me that 50% of the patients with AOA2 do not have the oculomotor piece of the disease so I shouldn't worry (don't worry, it made me REALLY wonder why they even call it Ataxia with Oculomotor Apraxia Type 2 if 50% of the patients don't have the "O" to the AOA?!).  The doctor had dilated Kai's eyes, so he couldn't go back to school because he couldn't see anything, so together he and I headed to pick up Thayne at preschool.  As we got closer, we realized that we still had 1/2 hr before we could pick him up, so Kai and I made a pitstop at the Y so I could sweat a little of my stress off.  Hindsight... God knew I needed that stop.  I bumped into my sweet friend as I was racing out the door to grab Thayne.  She handed me an envelope and told me to open it later.  I was frazzled, so shoved it in my gym bag and ran out the door, saying a quick thanks and not much more.  After a half a dozen errands and finally a shower, I remember the envelope and opened it at home.
Speechless and shock don't even begin to describe how I felt as I opened the envelope... and over $600 in cash fell out into my lap.  Yes, over $600!  My friend's small group from our amazing church had collected money to help cover Kai's medical expenses... little did they know what that morning had brought, or how speechless I had been that morning, when I really just wanted to SCREAM at God.  WHY?  WHY?  Why me God??  I was mad.  But still, God could handle it.  And He was just letting me know He still had my back.
Fast forward thru a crazy Tuesday and Wednesday (so crazy I don't remember most... just a nutritionist appointment for Kai, multiple other appts for the other kids, a follow up appt for my broken hand, etc), and get to today.  You know it's been a long day when you forget that your little 8 yr old has therapy when he has had therapy every Thurs for the past 3 years!  I know I've raved about his therapists before, but here I go again... they are AMAZING.  We are blessed with THE most incredible team of PT, OT and ST experts possible.  But here's the problem... the therapists know what they're doing.  Apparently the Duke specialist didn't.  For 3 weeks straight, they've been doing some eval testing, and every week, he's showed signs of the oculomotor apraxia.  Not tracking correctly, extreme fatigue after just a few minutes of tracking, etc... yes, total opposite of what the Duke dr said on Monday.  This week was no different.  And this week, they showed me how he is most definitely not tracking with his vision correctly.  I'm no eye specialist, but I know wrong when I see it.  His is wrong.  I'm the one who first noticed my boy needed glasses at age 2, and I definitely know his tracking was wrong.
So where do we go from here?  I don't know.  I'm spinning.  I'm frustrated.  This means we'll have to begin a fight with insurance to get a second opinion.  This also means a trip to UCLA is more important than ever.  And the honest truth of it... I'm angry.  I don't get it.  Why can't a doctor just do their job?  Why does my son have to struggle to just get by every day?  Why can't I just get a diagnosis and really process rather than still constantly having so many questions and "red flags" in his "possible" diagnosis?  Why did God allow this to happen to my little Kai?  Why?  Why?  Why?
So yes, this isn't a message of hope or peace today.  For that, I'm sorry.  But I just want to have a day where I can stop being dizzy for once.  A day with a definite.  A day where I can watch my little boy run and play like his friends and not come inside and flop on the floor in tears of pure fatigue.  A day where he can read like he loves to without his eyes being so fatigued he can't see straight.  A day where he can just be kid without the extra fight just to stay standing.

an uphill climb

February 9, 2013

So as I sit and write this, it's pitch dark, WAY too early in the morning, but I'm enjoying the silence since I can't sleep and going to drink a cup of coffee and update my blog instead :)
It's been a WILD past few weeks.  Full of specialists, meetings, paperwork, therapies, insurance fights... the list goes on but I won't complain because I'm thankful I've been able to get it all done and even mix in a bit of fun with the kids while at it!  So since my brain isn't fully awake yet, I just wanted to give a quick update as SO many of you friends and family have prayed, written me notes, texts, e-mails, called, made meals, and watched my kids...and I've totally dropped the ball on writing thank you's and giving updates in all the chaos.  So I'll condense it and give a snapshot version of life the past little bit...
A few weeks ago, I met with Kai's school team (twice actually) to begin the fight (again) for an IEP that would allow additional accommodations for him at school, as well as would hopefully begin to provide at least 1 therapy a week for him at school to minimize the amount of therapies I had to take him to outside of school (drs were wanting 3 per wk per therapy... PT, OT and Speech).  The first meeting was to update his 504 plan with his new diagnosis... second meeting was even bigger, and with a whole team to begin the fight for the IEP.  I honestly don't know how to say the meetings went, as they now technically have 90 days to do their own evaluations, read additional drs documentations on Kai, and make a decision... so I'm just waiting... again (I told you I've gotten good at that!).
The following week, I spent a day with Kai at a Duke Pediatric Child Development Specialist.  That's a fancy way of saying a doctor who knows how to help write ways to adapt to best help your child, and they also know the school system ins and outs to be able to help fight the schools for the IEP, as well as all the necessary parts of the IEP for your child.  This dr was fantastic, and is working right now on using all the current evals from Kai's therapists, as well as the school's own testing, to write a letter of insistence on why Kai needs an IEP asap, as well as helping lay out the specific things that will best help him function in the classroom at his maximum potential!  I will be meeting with her in another 2 weeks to go over that letter, and finalize all the details with her before I present the fight to the school.
Mix in there some therapies, time for playdates and pool fun (since my kids were all tracked out!), TaeKwonDo testing (and I have to pause here to just brag a little on my little fighter!  For those who don't know, Taekwondo is a martial art that requires a lot of discipline, power, and skills.  It's a fun family thing we started doing together over a year and a half ago, and Kai loves it.  It requires 10x the amount of work for him to do just 1 stance as it does the rest of us because his little body just doesn't stand still, but he fights, and he does his best!  And he has an amazing big sister who has taken him under her wing at TKD and loves to help encourage him, not to mention the incredible group of instructors who lead it and have been instrumental in Kai's progress and success too!  A HUGE blessing!  And so after 3+ hours of testing a week ago, my little man passed and graduated to his Orange Belt!!), and loads of other doctors appointments for my other 3 kids who were also tracked out and needing some TLC :)

So...the week ended last week with a VERY long call from a specialist at UCLA who is one of the lead researchers in the world for AOA2 (that's the short form of Kai's diagnosis!).  He was awesome.  He had spent the week reviewing all Kai's medical records, and he wanted to talk more.  I spent well over an hour on the phone with him, and he got lots more info, and had lots more questions for me.  The short version of that call is that he wants to see Kai at UCLA as soon as possible.  We are currently scheduled to see a specialist at Johns Hopkins later in May, but he wants me to bring Kai out to see him if possible before May so that he can do his own testing and evaluations, and help coordinate care with our specialists at Duke and Johns Hopkins.  The kicker is that he is seriously questioning the diagnosis.  IF indeed Kai has this, he will be THE youngest case ever documented.  There's quite a few things that are raising red flags for him in the diagnosis with Kai, but unfortunately, there is no one specific test that says yes or no you have or do not have this disease.  It's just an accumulation of lots of tests, symptoms, etc... and then they put the label on.  He has his doubts, as he currently sees 12 patients from all around the US with AOA2, and said there's just certain things (I'll spare you the details because they're pretty specific) that don't match up... but then there's certain things that match perfectly, thus raising the question of is it or is it not AOA2?!  So... currently I'm working on the plan to get to UCLA either in late March or sometime in April.  There's LOTS of details involved in that planning process, so I've been working endlessly on that, and hopefully will know more details of the dates by the end of next week.  I've been blessed with some incredible friends though... helping with airline tickets, calling their friends in Cali to see if we can have a place to stay, offering to help watch my other 3 kiddos, etc... it wouldn't be possible without them!  So I'm eternally grateful!
So where does that leave me...
On an uphill climb.  I was just beginning to process actually having a diagnosis, and walking forward with what that all meant for us (if you're curious, you can google Ataxia with Oculomotor Apraxia Type 2... you 'll see a snipit of the LOADS of information I've been trying to digest!).  And now another question mark?!  Back to unknowns?  So yes... I do feel UCLA is critical (some have asked me that considering the expense and time it will take).  I have to do this for Kai.  And I have to do this for me.  I need to know whether or not this is what we're fighting.  Because if it is, I need to be able to walk forward with it.  But if it's not, I need to go back to base camp and begin the fight for a diagnosis all over again so that I can figure out how I can best help my little guy!
I'll keep you posted...
Monday, we head to another new specialist at Duke who will be working on the neuro-muscular vision piece of this disease (if you read about AOA2, you'll see 50% of the patients have a neuro-muscular vision struggle with it that's pretty serious).  We're not sure if Kai has this, but Monday should help give some clarity to that, at least for the time being.  We'll see...
It's a 1 day at a time... 1 foot in front of the other, journey.
And as you can tell (5am now).... I'm pretty sleepless processing it all :/
But thank you for your prayers and encouragement of every form!  Seriously, I cannot say thank you enough.  You have been my lifeline as I hold on to threads of hope.  As my amazing daddy messaged me last week, I don't have to keep holding on, because I can know that even when I let go, HE's still there with open arms to catch my fall (or in my case... meltdown!).  That's hope.  Somehow, in the middle of this stormy mountain climb, HE's got it under control.