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 6th (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….
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