without blinders...

So a few weeks ago, I decided to start a blog.  Mainly because finding the Facebook “notes” page became way too complicated when they changed everyone over to “timeline”, but also because I felt like it would be good for me to make a place to share our story, and if someway, somehow, our story of our journey with Kai could help someone else, then it would all be worth it.  So I began my hunt for the perfect name for my blog.  After a LONG hunt for names, many of which the domain had already been taken, I was challenged by an amazing friend to find something that was outside the box yet still defined me.  “Living without blinders” just felt right.  I try to live life raw and real.  I lived for a long time behind a mask, which was exhausting.  But life has dealt me a lot of blows that has forced me to live raw and without blinders.  Just real.  So it’s all out there.  I’m a “what you see is what you get” sort of girl.  No more masks.  Just “life without blinders”.   So I’m working on setting that up… but in the meantime, as I brainstorm that perfect name… I’ll attempt to post another “note”.

So… here’s the latest.  Mind you, I typed out a VERY long update a few nights ago, which for some reason blogspot.com decided to delete, so I’m starting over.  The second time is always better because the glitches are all out right?!  J  So this past summer, the doctor’s did the Exome Sequencing test on Kai.  The nutshell version is that it’s a VERY rare test that costs LOTS and may or may not give us answers (see previous update!).  We were warned it could take 6-9 months to get back.  Over the course of that time, we’ve been sent to many other specialists, all without answers but continuing to fight to find a cause to Kai’s struggles that are progressively getting worse.  From day one of our journey 3 years ago, Kai was sent to see our AMAZING Physical Therapist, Betsy.  She’s been an answer to prayers that we hadn’t even thought to pray yet.  She has been a passionate advocate for Kai, continuing to stay on top of all the latest research and continuing to love on Kai like he’s one of her own.  She has been amazing…someone rare that you usually only pray that you will find in the healthcare system now, but she’s real and full of a heart for Kai and for his best interests and for our family.  We’ve been through quite a few Occupational Therapists since the start, but after quite a few changes, we’ve landed with Kim.  Kim is passionate about what she does and amazing at it too.  Despite having a more than full schedule of patients weekly, Kim was willing to take on the challenge of our sweet mystery diagnosis Kai, and we’ve never been sorry about the changes that led us to her.  She’s been incredible!  And then we have Jessica.  She’s been our incredible Speech Therapist from the start.  Due to scheduling conflicts originally, we changed around to multiple other therapists… but thanks to circumstances beyond our control, but definitely in God’s hands, Jessica was brought back to us at the therapy location closest to us where Kai was getting his PT and OT, and we’ve been beyond thankful!  She’s full of life and energy and a passion for our son’s wellness, but also for making his “therapy” fun while working on his progressively deteriorating condition.  And with THIS incredible team… Betsy, Kim and Jessica… Kai LOVES his therapy.  It’s a good thing too, because he spends 3 hrs every week with these girls.  But they’re a God send. 

I introduce you to them because they play an important role not only in the constant help to strengthen Kai’s weak and unstable muscles, but also teaching him to modify, adapt, accept his condition, and keeping his life, the life of an active and intelligent boy, as functional as possible, full of joy, fun, laughter, confidence, and most of all, hope.  So as I mentioned, Betsy, our PT, stays on top of all the latest research.  So back in October, she introduced me to this new TheraTog outfit that she had been researching.  It’s designed to help assist kids who struggle with muscle control and weaknesses.  They’re used for posture and torso alignment control.  So they don’t fix problems, but they definitely help with the symptoms.  So she got him one to try.  It was the best birthday present I could have ever received.  We have been working with Kai for 3 full years to try to get him to balance standing still with his 2 feet together for just 10 seconds.  See, that’s something you and I take for granted.  Go ahead.  Try it.  Easy for us.  But for Kai, 3 seconds was his max.  Then, he’d wobble and fall.  No matter how hard he tried, he couldn’t do it.  And trust me, he tried.  So 10 seconds seemed impossible.  THREE full years we practiced and worked at it.  But nothing.  Then enter Betsy’s research and the new TheraTog.  I only remember it was October because it was my birthday, and I was frustrated at spending yet another birthday with 3 hrs of therapy.  Normally, I sit in the waiting room with the other 3 kids, or run to the grocery for a bit with the other kids, but tonight, Betsy asked me to come back to his therapy session to see this new “suit” she wanted to try on him.  I can’t begin to tell you the next few moments in words.  It’s probably better described in tears.  She but Kai’s “suit” on him, and he stood.  Still.  Not just for 3 seconds, or even 10 seconds, but for 20 seconds.  My eyes were too blurry with tears to keep counting and watching.  All I knew is that I wish I had a camera of his face.  It was priceless.  His eyes, full of renewed hope.  His smile was as big as his face as he watched himself in the mirror actually standing still.  Something he worked SO hard on for 3 full YEARS… and suddenly it was possible.  He did it!  So that day, we began our fight with insurance to get him his own “magic suit” (as he named it that day!) as soon as possible.  Once again, Betsy was on our side, fighting with us.  Three of his other specialists who hadn’t even seen the suit or seen it on Kai wrote letters recommending the necessity of the “magic suit”.  We went ahead and ordered the suit…and just figured like everything else, we could continue the fight after it arrived.  So the week before Thanksgiving, Kai got his very own suit!  We’re still fighting insurance, but in the meantime, Kai is loving his suit, and that’s worth every minute of the fight!  It in no way fixes the problem, but it allows Kai to feel a sense of security that he can’t feel without it, so it’s worth it to see the confidence it gives him.  I’ve said it before and I say it over and over again… it takes doctors who are on your side and don’t just look at you as a number to get things done and to make forward progress and keep hope alive.  And for me, Betsy was a sparkle of hope that I needed on my birthday J

So we fast forward a bit again… it’s now December.  Our weeks in between consisted as usual of a minimum of 3 therapies, and then anywhere from 1-6 other doctors appointments for Kai.  Then, throw in there what was supposed to be a “well check” for our 10 yr old daughter Kalia, and turned into quite a nightmare when the pediatrician tells me that she spots a pretty serious case of scoliosis in Kalia’s back that needs immediate attention.  So just in case I was bored, I got to add in more specialists for Kalia to begin to monitor her back.  Initially, they said it looked so severe that it would require surgery right away.  Yep, just in case I had nothing else to do with my other 3 kids, one being special needs, all I needed was a child with back surgery.  So I begged God through many tears to please not let it be true.  With the recommendation from our pediatrician, I took her to one of my doctors who is a chiropractor, but also a holistic specialist.  And yet again, God showed up with more of His little blessings.  After x-rays and a thorough exam, she realized that Kalia has an extra lumbar vertebrae that just makes her extra special J  So instead of 5 lumbar like you and I have, she has 6, so her spine has to curve just a bit to make room when she bends (and it also means there’s a very strong possibility she will be tall… taller than me!).  So there’s a high probability it will cause her some pain down the road if and when she has kids, but for now, they will just treat the symptoms.  Somehow, it had also caused one of her lumbar vertebrae to rotate 90 degrees the wrong way, so they are working with her twice a week now to try to manipulate it back into it’s normal positioning before she hits her growth spurt… but I’d 100x rather this than surgery!  So just add those 2 appointments to my calendar every week please J    

So this brings us up to the current.  Last week, the specialists at Duke messaged me saying that they are expecting results THIS week on Kai’s Exome Sequencing that we had done this summer.  So… for me, mom, something that I had been able to push to the back of my mind for so many months got forced back to the front and center.  So now we wait.  I sit on pins and needles waiting for the call where they will hopefully tell me some answers.  Today, I got a call… and our lead Duke geneticist said she’s still waiting for the results.  So again… we hurry up and wait.  She’s called the lab again today and is hoping for a response tomorrow.  We’ll see. 

Your prayers have been critical.  The prayers, calls, texts, hugs, and tears you have shed with me as I wrestle through this have been more help than you know.  I’ve been following the journal of a family who lost their sweet baby boy just an hour after his birth.  It’s amazing how God uses a journey of pain to speak to you in ways you never dreamed possible.  And as I read their story, their pain, their joy, their anguish, I found tears freely falling down my face.  For those who know me very well, you know I don’t cry.  I fight.  I fight because I have to fight and keep moving or I get stuck.  I have to fight, and for me, not feeling makes it easier to just fight and fight some more.  But this week, I felt.  It was something rare, but something I needed.  I needed to feel.  I needed to just cry the tears of “what if”.  The tears of anger.  The tears of frustration.  The tears of exhaustion.  The tears of “why”.  The tears of a mama hurting for her son.  The tears of a mama who wishes with everything in her that she could take the pain and frustration and embarrassment and hurt from her sweet little boy who fights harder than anyone else I’ve ever known. 

But then I get back up, brush off those tears, and fight again.  And wait.  I hold on desperately, by a thread, but desperately to Jesus.  Because that call WILL come.  I pray it’s tomorrow, but it may not be.  So I have to wait.  Just hurry up and wait some more.  And in the meantime, I appreciate your prayers.  Your love without expectations.  It’s a long road ahead… but we’ll take it one day at a time… and wait.