Elevator

        It's days like today that I feel hopeful. Days when nothing particularly amazing happens, but yet I'm caught in a whirlwind of gratitude. It's days like today when life is enough to hold at the end of the day. Circumstances haven't changed for better or for worse, but there is an unchanging and unshakable foundation of hope that I find myself standing on. Most days, hope looks like a thin sheet of glass that I am standing on high above the earth below me--like the see through floor of an elevator in a posh London highrise. The foundation has tested strong, but I look down and am filled with momentary fear. Today, despite looking down, I realize that hope isn't as fragile as I often think it is.

       Hope- expectation - expectancy - expectant - trust - promise

    
       In the definition itself, hope has nothing to do with emotion. It's an attitude. Hope is a truth buried within us--one that sustains despite circumstance. I often think that hope relies solely on how I feel in a given moment. I either feel hopeful or I don't. I hope for something or I doubt. Hope is often discussed like it is some fragile state of being--like it could shatter like the glass floor of an elevator. Hope isn't weak; it is tough. It's audacious and unapologetic. It doesn't crumble at the sight of fear or shrink back at defeat. Hope carries us even when we are broken.

       Hope found in God is the most beautiful of all. Set aside from him is there any hope at all? It partners with faith and they cling intimately like fingerprints on glass. I have held hope tightly recently--both for myself and those in my life that are facing heartache. Hope coupled with faith runs through my veins not because I am strong, but because at times of despair it's all that we have. God supplies us with hope and faith because he knows that we will need them more than the ground needs water to sustain growth. Today, I am hopeful and faithful.

       I stand on the seemingly fragile foundation that appears that it may shatter beneath my feet. The truth is, hope is stronger than I will ever know and it's going to lift me up one floor; one trial at a time.

Three

One day I met you
You were wearing a white jacket
Rolled up sleeves
And too much hair product

One coffee date
With two other girls we knew
Soy and Caramel latte
And too much to tell in one hour

One second of starring
Before you caught me
Flushed cheeks so pink
And I looked the other way

One year of friendship
Me in polka dots and you in gray
English rain and puddles
And a kinship like glue

Two suitcases packed
Moving back home
America and family
And too much time apart

Two calls a day
Me missing you; you missing me
900 miles by car or two flights
And too far away

Two vows of "I do"
Me in white and you in black
Family and friends to celebrate
And a new chapter began

Two toothbrushes and opinions
To crowd a tiny bathroom
Just you and me--one last name
And our apartment was home

Two years in New Hampshire
Me crying because of the cold
One hug to keep me warm
And two winters of snow

Three--makes a small family
You, me, and the pup
Cleaning up pee and poo
And a new little life to love

Three years of appointments
Specialists and tests galore
You next to me
And no one else would do

Three years of happiness
Despite what has come
Hand in hand is what matters
And God guiding us

Three years of coffee
Three years of snow
Three years of hugging
Three years of knowing
Three years of "I do"
Three years of tears
Three years of truth
Three years of loving

One.
Two.
Three years of us.
No one else would do.



Happy Anniversary, my Matthew. I love you. x

somewhere

somewhere beyond the fluorescent lights.
beyond the sunrise.
past the showcase lighting.
is a glimmer of light in the darkness--outshining all three combined.

somewhere beyond the facade.
beyond the masks.
past the fake personas.
is a glimpse of self in the mirror--outlasting all three combined.

somewhere beyond the clash.
beyond the crash.
past the echoed cries.
is a voice of peace in a whisper--outlasting all three combined.

somewhere beyond the busyness.
beyond the job.
past the temporary fix.
is a life of purpose in the soul--outlasting all three combined.

Health Update--Putting the Pieces Together

        I write these updates for those of you that have been a huge support network for Matt and I. If anything, I have learned that asking for help and support isn't a sign of weakness. I realize that the people in our lives want to be there for us and God has given you to us so we can be lifted up in times like these. We pray to God that we have also been a support to you in your times of need. I also write these updates for myself. My spirit repairs little by little when I write even if my body doesn't.

      I wrote this yesterday:

                 Now? Now is one of those moments when the facade crumbles and the curtain falls. My fear is revealed and I feel naked. I am sick and my body is rebelling against me. I don't know why and answers won't be here when I wake up. I have to wait. Wait for doctors to read, analyze, and announce the test findings when they have set 15 minutes aside. I have to pay for their time and use my extra change to buy some energy in a Styrofoam cup as I wait. It's the waiting that kills me and the guilt. Guilt for not feeling faithful enough, strong enough, thankful enough. I buy doctors' time but I cannot buy peace. I trust God, but doing so doesn't help me do the dishes or put normal feeling back into my legs. I trust. I believe. I strive. Still, I am tired, weary, and hopeless most days. Afraid of what will be there and also afraid that nothing will. Friends and family pray and it carries me, but I still find myself on hands and knees begging for God to reveal what is wrong. Today I am weak. I feel less than human...like some desperate flower trying to flourish on rocky terrain beneath harsh winds and snow. Do I believe he will rescue me? Yes, but is it enough to only believe? Today I am raw. Real. I only want to be new.
 
         Over the past three years of being ill, I have accepted the fact that I will have daily fatigue and cognitive problems (lack of concentration and difficulty remembering things). In fact, I came to a place where I was learning to "live around" those things. In June, I began to experience new symptoms that were really concerning. Since June my body has quickly attained new symptoms and seemed to begin a decline. There have been several occasions when I have lost the ability to move my legs properly. For 2-5 minutes, I can only wiggle my toes rather than extend my legs out straight or kick them. My speech has suffered at times--whether it's not being able to form words or slurring when I speak. The cognitive problems have become worse. There are days where I cannot remember things that happened earlier in the morning or I cannot focus well enough to read or hold a conversation.

        Matt begged me to go to the neurologist so I made my first appointment on August 7th. The neuro listened to me patiently and made an immediate plan of action. She ordered an EMG test which I was able to take the next day on the 8th. If you don't know what an EMG is then searching on Google is your best bet. I can't describe all that it does in detail and I wouldn't want to bore you. In short, it checks the health of your muscles as well as the brain to muscle connection. The EMG revealed that I have muscle damage in both legs and I tested on the "low end of normal" in my reactions. It's currently unexplained since I have not had any past trauma to my legs. On August 15th, I went for my second test--an EEG. Again, Google is your best bet for finding a full explanation. Yesterday, August 16th, I went for an MRI of my spine to check the health of my spine and for the existence of any tumors or abnormalities. These results will be available to me when I have my follow-up appointment with the neuro on August 28th.

        The neuro did blood work which showed that I have Lyme Disease. That is, Lyme on top of the auto-immune disease I have. I am on an anti-biotic for 14 days and I have to see an Infectious Disease doctor on the 21st of August. He should be able to tell me how long I have had Lyme. It's possible that Lyme could be causing the neurological problems I have been experiencing. I would have had to have it for more than a year, though. Depending on how the EEG and MRI results come back will determine if Lyme has caused this or if I have an underlying neurological problem.

       At the end of the day, my hope is in God. That doesn't mean I don't get scared, though. Thank you for reading this and keeping Matt and I in your prayers. Please do pray for my health, but also keep my sweet husband in your prayers, too. He has been such an amazing support and I know he is tired and carries his own fears. Thanks to him for encouraging me to make an appointment with the Neurologist!

      Your prayers are priceless to me. The thing that I love about your prayers and support is that I never know when you're sending them my way. They're an invisible offering of hope to us and it's often the unseen and unheard that lift us up the most.

       Pressing on until the 28th.

With love,
Nikki xx

Holding Faith

      

       Last month we took my parents and the kids to D.C. for the day. My little sister Olivia has always been my shadow. She insisted on holding my hand the whole day and clinging to me non-stop. She is eight-years-old and at that age when life still seems so bright and full of fun to be had. Her tiny hand wrapped around mine every chance she got and Matt captured it for me. It's those small moments that make the biggest impact on me. I walked around with Olivia thinking I was offering her safety from the cars on the street and tourists that she was bound to run into. The day wasn't anything spectacular other than the simple fact of spending it with family. Olivia was at my side all day--small and enthusiastically willing to be with me. Her cheesy kid jokes and unceasing giggles made me smile. The day began, photos were taken, and then it was over.

      Here I sit about a month after their visit and I am overwhelmed by a new insight. A simple black and white photo is illuminated by the dull light of the laptop screen and I am...surprised. I'm surprised that I didn't understand sooner. I'm surprised that a kid can teach me a lesson. I'm surprised that we often overlook the smallest things and just excuse them away as "the norm". We do, though. The sun rises, we get dressed, we breathe through another day, and we cover up at night in the same bed without feeling as if anything has changed.

     I looked at this photo today and I realized something. Olivia wasn't holding my hand to be protected; she wanted to be with me. This may seem like the most mundane thing to write about. Hang with me a few more minutes, though. Now I didn't hold Olivia's hand because I simply wanted to be with her, but I did it out of instinct to protect her. So, what's the big deal? We held hands the entire day for two totally different reasons. In the Smithsonian, I didn't want her running into the crowd so I held onto her. At the same time, she wanted to show me something so she held onto me and guided me through the crowd to each exibit.  Two different perspectives. Two motives. One day. One act.

      I see now what I didn't see that day--faith. It's something that on my best days I don't have much of. I used to feel guilty for that--not having enough faith because that's a core need in Christianity. Cliche' sayings follow us--"keeping the faith" "living the Christian faith". Then, life happened and God showed me something that no Christian had ever bothered showing me before--that faith isn't some polished and perfect state of being. It's raw, it's sometimes tattered and torn; almost always minimal. But small faith is enough for God to work with. It's enough to carry me from day to day.

     In every one of my five doctor's appointments this month I have walked in holding onto faith. I have held on to faith as my faith has grown smaller and medical records have grown thicker. This is no noble thing. My faith often rests within me as some wilting flower--it's not pretty, but it is deeply rooted in something other than myself. At the end of the day, I have to open my hands in faith, no matter how small, to God's provision. He knows. He holds me to love me and I often hold onto him because I am fearful and uncertain just as I was with Olivia. Two different perspectives. Two motives. One day. One act. He holds me.

     Small kids often teach big lessons to those of us that have grown too old to open our eyes to possibility. We've become jaded and often times have lost faith. When I see this photo of Olivia holding my hand--I see faith holding on to me because Olivia's middle name is Faith. Just like Olivia, God clings to me simply because he wants to and I hold on tightly because I know I need to.

Different perspectives and motives? Maybe, but Olivia would say that what mattered to her most that day was being together hand-in-hand and facing the unknown together.