Introductions and praises...

I've decided I need to just stop saying I'll try to write more frequently, because the reality has set in that although I have good intentions of doing that, it really won't happen so I will settle for updating periodically and being happy with that :)  I know this blog started for my friends and family, and maybe even some strangers who just might be walking a tough road and need to know someone else out there is walking it with them... to let each one know the story of our struggles and triumphs as we walk this road full of unknowns with our son, Brayden Kai, who has a VERY rare neuro-muscular genetic condition called Ataxia with Oculomotor Apraxia Type 2.  But over the past few months, I've had it on my heart to introduce you to Kai's other siblings.  After all, they are walking this road too, and they've each got their own personalities, differences, uniquenesses, and ways of coping with their brother's "illness".
My original intent was to introduce to you to my oldest daughter, Kalia Brynn, first... but as we all know by now, I don't do very well of writing often, and some things (which you will read about shortly as you keep reading!) have changed that plan and I'm going to start at the bottom... with my son Thayne Kekoa.  Thayne is 4... a little bruiser, all boy, and full of life and energy and loves to do all the typical things boys do with balls, Legos, swimming, climbing, tumbling, and wrestling!  Thayne's best buddy in the world is his big brother Kai.  Everything Kai does, Thayne wants to do too (much to Kai's dismay often times!).  Thayne also has an incredible heart of compassion and empathy.  All he knows is Kai struggling, so for him, that's just life.  We first started noticing struggles with Kai right after Thayne was born, and the hours upon hours of hospitalizations and tests began shortly thereafter, so that's all Thayne knows.  He's spent more hours in hospitals and traveling to and from doctors appointments that aren't even for him than any other child I know, yet he never complains.  He's made it his life mission to help his big brother in any way he can... from reaching him things, to making sure Kai's taken all his meds every day, to even asking to change from the bottom to the top bunkbed so that his big brother doesn't have to struggle as much to climb in and out of bed (we live in a smaller home where all our kids have to share bedrooms, so there's no choice but bunkbeds!).  If you've ever met Thayne, you know he loves to talk if someone will just listen... and he's got a wild imagination so just be prepared to listen and laugh :)

So here's the reason I started with Thayne... not only is my "baby" (well, he's not so little!  He's bigger than most kids in 1st and 2nd grade, including his 2nd grade sister!), but these past few months have been quite a journey with him.  About 6 months ago, we started noticing some similarities in Thayne that resembled a lot of the struggles that Kai first displayed when he was 4 and we started taking him to specialists around the country to try to figure out what was going on.  With Kai, they did EVERY test under the sun, from telling us they thought he had a brain tumor and doing CT scans and MRIs of his entire body to try to figure out where the tumors were, to muscle biopsies, to labs (the poor boy literally had pints of blood drawn over the course of 4 years to send off for tests!), to x-rays and nerve conduction studies and everything in between.  We've watched Kai's disease progress since he was 4, so we're pretty clear on what we saw and how his disease has progressed.  Our fear with Thayne was that we were starting down that same road.  In all honesty though, I was terrified to even admit my other son may have the same disease, so I pretended not to notice.  Every time he'd randomly just fall, or walk into walls, or display some of the same mannerisms as Kai, I'd try to block it out.  See, it took over 4 years to get a diagnosis for Kai, and only in January of 2013 did we finally have an official diagnosis to help direct us to understand his struggles.  That was right around the same time I began noticing Thayne's struggles, and I was still processing Kai's news, so couldn't emotionally handle anything else.

Fast forward to this spring.  I was having a really hard time ignoring Thayne's "coordination" struggles anymore, but somehow I had managed to keep it to myself.  Then, a specialist who has been walking this journey with Kai since the beginning with us, happened to notice Thayne in the room with Kai as we were there for an appointment.  She paused in our conversation, observed, and then looked at me.  The minute she looked back at me, my heart was overwhelmed because she didn't even have to say a word.  I knew what she was thinking.  Her words only confirmed that.  She, and I, were both afraid Thayne may have the same disease as Kai.  So although it's an incredibly rare disease, we've also been told that there is a 1 in 4 chance that each of our other kids will be diagnosed with the same disease.  Since we've been walking this road with the same amazing team of specialists at Duke for 4 years now, they know me by name (yes, our lead one even has my name on speed dial and answers "hi Heather!" when I call!), and they are in this for the long haul with us and would bend over backwards for us.  So I called.  I was greeted with the same "hi Heather!" as usual, but as soon as I started telling her my concerns regarding my little Thayne, my voice broke and so did hers.  She and I talked for over an hour about whether or not to have him tested, or to just wait a bit longer.  And we both agreed that the only way to ease my mind and fears was to bring him in and test him.  Like I said, she's amazing and would bend over backwards for us, and she did!  She was going to be in clinic that Thursday (it was a Friday when I called her, and they are only in clinic 1x per month in the Duke location near us!), and although her schedule was over-booked, she told me to come in early before her first patient, and she would see my little man Thayne and do an initial evaluation, and do his blood tests to see if he had AOA2 like Kai.  The next few days were a blur. It was a God thing to have an appointment that quickly, but I also knew that we were facing yet another long wait.  She told me the wait would be at least 8 weeks, possibly longer.
So we went to Duke, had the tests drawn, and began to wait.  We only told our very close friends and family.  Honestly, I couldn't handle anyone asking me any more questions, or asking me whether or not the labs were back.  I just needed people to pray, and I needed my close friends to just understand if there was days I just needed to melt down and cry, or go for crazy long workouts with no explanation.  I said from the beginning I don't believe in painting a pretty picture, but instead I believe in being raw and real... living life without blinders.  The next 8 weeks were not pretty.  I tried desperately to hold on to the promises I know that God gives us... that He will be there every step of the way, and He'll never give us more than we can handle, and that He will give us strength for each day (and moment of each day!).  But I must admit there were many days I had doubts.  I asked a lot of "whys".  My mind filled with fears and what ifs... how would I cope with 2 boys with the same disease, both ending up in wheelchairs within a few years time?  It was the prayers and encouragement of my close friends and family that walked me thru what felt like the longest weeks ever.  That was the beginning of June that it all started...
I mapped it out on my calendar... results were due in around the end of July or early August, IF labs ran on time and didn't mess up.  I also knew from experience with Kai that the lab often messes up and has to do re-draws on the blood, or just takes way longer than they originally say.  I've learned to wait.  But I was hopeful for the 8 weeks... I had planned to drive my kids up to Canada to see my family and spend time visiting family and friends for 2 weeks over my kids track out at the end of July/early August.  That way, if the results were delayed, at least my mind was occupied.  I had e-mailed the specialist my numbers at the cottage "just in case", since I don't have any cell reception of my own up there.  I sent that message full of doubt, but figured it couldn't hurt.
I don't know why it always amazes me how perfect God's timing is, but somehow it does.  This time was nothing different.  I had gone for a long run alone on the hills on our second to last morning at the cottage.  My parents had gone for a jog together before me, and Kevin had agreed to watch the kids.  My parents came back and were hanging out catching their breath before heading down to join Kevin and the kids at the water, and I was still out running... and the phone rang.  Now you have to know, when we are at the cottage, there is hardly a single minute we are actually inside the cottage unless it's raining, especially at 11am.  Yet again... God's timing that my dad and mom had just walked in the door from their run!  Dad answered and as soon as he heard the woman say her name, he knew he needed to get either Kevin or I, and since I was gone, my mom began shrieking for Kevin (yes, she shrieked!  it's a huge lake and I'm pretty sure the rest of the lake knew she needed Kevin!  hehe!).  Kevin ran up to the cottage (some ungodly amount of steps!), and anxiously answered the phone.
Just to keep you in suspense like I was ... I'll remind you I was out for a long run alone, with no phone or access to anyone!  I came back to find my dad still sitting in the cottage, and all he says is "Dr. McConkie just called.  I think you better go find Kevin."  (and Kevin was out in the kayak by this time!)  AHHH.  I didn't know whether to throw up or cry or swim out to the kayak to find out what she had said.  I suddenly didn't know if I wanted to know, because if it was bad news, I was too tired to go run more miles and cry it out, but if it was good news, I wanted to know.  Kevin finally paddled in, parked the boat, and began to tell me.  She had called... the test results were in... and Thayne Kekoa did NOT have AOA2!!!!!!!!!  I must admit I stood there in shock.  There was a million things I wanted to say and do but my body froze.  I couldn't do anything but just stand there!  It wasn't until my mom wrapped her arms around me and began to sob that tears of joy and incredible relief began to fall.  I don't think I fully realized the weight of fears that were weighing on me about his tests until the results came back until that moment I felt them lifted.  I cannot describe it, but I do know that the only thing that kept flooding my mind was "thank you Jesus".  I've thought many times since that moment... "would I have been able to say Thank you Jesus if the results had been different?  would I have been able to trust that my God knew and knows what He is doing, even when the tests don't come back like I ask?"  I don't know.  I wish I could say a confident yes to both of those questions, but I don't know.  One thing I do know today though, is that I'm beyond thankful for the clear test results for Thayne.  And I also know that I still hold on to the promise that He will carry me moment by moment, giving me strength for today and hope for tomorrow.

On a side note, some friends have asked, and you may be wondering the same thing... have we had our girls tested?  The answer is no.  We do not plan to unless they begin to show symptoms or unless they go to get married (it's important they know they as they will need to make a choice of how to tell their future spouse and also they'll need to make informed decisions if and when they decide to have children of their own).  But for right now, I'm choosing to rejoice in Thayne's news, and take each day one moment at a time with Kai's struggles... and I'm thankful I have each of you covering us in prayers and encouragement!