I silenced myself

Over the past few months, you have noticed that the blog has been sporadic. For most, this means life was too hectic and it feel on the back burner. For me, it means that I silenced myself.

The blog has always been avenue where I could express myself, try my crazy marketing ideas and fail freely without judgement and concern of the outcome. Some where of the past few months, I chained the medium and myself.  I put standards around my writing, my activities and my honesty. I silenced myself. Read more

Life Lessons

Every day, I cross the link into the hospital. So you think on days that I play the patient’s wife it wouldn’t phase me much. It is business as usual, right?! Well, my logical assumption couldn’t be more wrong.

In the past 4.5 months, I have filled the patient’s wife role a lot. For our story, that means being Brad’s driver, cook, house cleaner, insurance provider, friend, the source of entertainment and social interaction. It also means, I spend a considerable amount of time waiting for Brad. In my time waiting for Brad, I have learned so much about our marriage, life, faith and myself.

  1. Average patient families do not pack their backpack and work while waiting. God has given Brad and I the strength to normalize and thrive in this chaos. Every time, I think I can’t possibly be stretched anymore, I find a way. I one time asked Brad, “What do normal patient families do?” and he responded quickly “worry.” I laughed and told him “who has time for that I have a lesson to plan and a report to pull.”
  2. Some expectations are needed for sanity, but don’t over plan or set your expectations too high. Some of the best moments, Brad and I have had over the past few months have been born out of spontaneity. No expectations of what the night would be so you could genuinely enjoy your company and night. This is still new for a type A person like me, but something I hope to adopt fully. You find joy so much easier when you don’t put all these restrictions on it.
  3. Never make an assumption about the person next to you. You might think you have the worst hand, but you never know what the person next to you was given. Now I am not suggesting you go around asking everyone, “How are you? No, really how are you?” I am suggesting be a bit kinder, smile a bit longer and talk to a stranger. You might be the only bright point in their day, or they could turn out to be the highlight of yours.
  4. My husband is the best thing that has ever happened to me. He is literally, the best thing since sliced bread. This is a real accomplishment for Brad since I have had a blessed little life. Brad inspires me every day to be the best version of myself. Every day, I wake up and thank God that he made Brad just for me. Even with all the craziness of life, I still think how am I lucky enough to be his wife? I am blessed enough to share my life with his funny, intelligent, inspiring, kind, generous and good looking man. Holy crap, what did I do to deserve him?
  5. Everything will be ok. Life might not look how you imagined, and you may have what feels like a thousand unanswered prayers, but it will be ok. Every day, I read two reflections, Blessed is She, and Jesus is calling. Between the two, they have curated something beautiful just for me. It is simple.
  • God knows where you are going.
  • Unanswered prayers are always heard, and we are waiting for something else to align.
  • Praise Him even through your worry, pain, anger and uncertainty.
  • I know that God is building us a life that is more stunning than I could ever imagine.

My husband, the zebra

I use to always tell Brad his spirit animal was an Elephant and I was a peacock. He would jokingly yell that fat jokes are not nice and I would defend myself claiming Elephants like him have a great memory. Peacocks, on the other hand, were bold, beautiful and oh so forgetful.
Our little routine often played out as a result of my bad listening skills and was the trademark conversation of our marriage. Based on no facts and pulled straight out of the blue, I used my animal analogy as the explanation for Brad’s overachieving competencies and my normal brain, but stellar good looks.

Over the past four months, I have determined that maybe my very well thought out analysis of his spirit animal was wrong. As of meeting the new doctor yesterday, I have determined that Brad is actually a zebra!

“When you hear hoofbeats, think of horses not zebras!”

In the medical community, there is a simple saying taught to remind folks to look at the most obvious explanation. When you hear hoofbeats, it should logically be a horse… right? Well in our case, we are lucky that Brad is a zebra! Being a horse would have resulted in a brain tumor. Finding the horse is what we tried to do for four months. Many educated people looked for those logical horses, but the hoofbeats didn’t belong there. Thank God!

Yesterday, we met with a neuroimmunologist. I swear this is not a made up word even though it sounds like Dr. Seuss himself crafted it. Dr. Shanin spent 90 minutes reviewing Brad’s case with us. He knew that horses were ruled out and went straight to hoofbeats belonging to a Zebra. While he has some ideas of what it might be, he even is double checking prior work to make sure the interpretation of the hoofbeats were right. As D is unique and can’t check all boxes of any diagnosis, I am thrilled with rechecking. The newest hunch is autoimmune disease and vasculitis. While we seem to be now pointing the right direction, I have learned not to cling on to a hunch. For all, we know this zebra might be rainbow striped and turn out not to be this hunch at all.

So like many doctor appointment’s before, we do not know much about the long-term outcome, but we do know the steps needed to get us closer to naming D.

  • Blood work
  • MRI of brain and spine
  • Present findings to another case review (This will be the third time Brad’s zebra case has gone to a review like this)
  • Possible spinal tap

We meet with Dr. Shanin again on March 2nd. Until then, we will live by this little tale.

Each morning on the African savannah, a Lion wakes up.
The Lion knows that to eat, it must be faster than the slowest Zebra.
At the same time, a Zebra wakes up.
The Zebra knows that to survive, it must be faster than the fastest Lion.
The moral is ………
It doesn’t matter whether you’re a Lion or Zebra.
When the sun comes up, you better start running.

Brad is good at running in the figurative sense of course. In our 11 years together, I have only seen him actually run once. 🙂 Every day, you got to wake up and try your hardest to make the most of the day. Frankly, you gotta start running.

Dear God

Dear God

We met D nearly four months ago as she boldly announced herself at a concert. Like many times after, she rudely inserted herself at the most inconvenient times. She found her way into moments, when I was hours away for work, trying to take a night for myself, enjoying the holidays, meeting a tight deadline for work and oh so much more. D has successfully found ways to squeeze into every aspect of life and sometimes against my many attempts to keep her at bay, she win my attention, energy and causes overwhelming fear and what feels like a hollow out of reach future.

When the weight of D comes washing over me, I have to take a deep breath, shove D back where she belongs and keep repeating…. All in God’s time and in His plan.

To every [thing there is] a season, and a time to every purpose under the heaven. – Ecclesiastes 3:1

While I chant my mantra incessantly, the overwhelming waves of D have become more frequent. For a few moments every day, I am overtaken by it all and lash out. Once, I calm myself down; I turn my attention back to God – All in His time and in His plan.

On a particularly long day with D was rearing her ugly head – Brad with headaches and me with exhaustion and fear, I had a conversation that went something like this.

Dear God,

Did you know that we are on 100 plus days since starting this journey? And while I know this time frame is nothing for you, it is a long time for me. You realize that I live in the era of Amazon Prime, right? I mean even here in St. Louis, I can get anything in two days. We are considered archaic compared to the main cities that could get that same item in mere hours.

Here we are 100 plus days just trying to name D properly. Don’t get me wrong; I am overjoyed at the path you have chosen. I am humbled by your grace and power. I am astonished to read the word tumor on every document and know by your abilities; you changed our path.

But God, I am woefully human. I am impatient, and I need your grace. I need you to carry us through this next wait. I need you to help me find the line between your timing, plan and my own human efforts needed to push Brad’s care forward. I need you to heal my husband and show me the path for us.

Just as a reminder, you did create the universe in 6 days. Could you speed this up?

Love,
Your impatient child, Nicki

We meet the next doctor in 10 days. It will be 129 days since we first started this journey, and I speak for both Brad and me when I say we are getting tired. We are weakened by not knowing what comes next, or the time it takes to get answers and heal Brad.

And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly, therefore, will I rather glory in my infirmities, that the power of Christ may rest upon me.  – 2 Corinthians 12:9

While the body and mind might be weary from the long journey, our spirits, laughter, love and faith is strong. Every day is a gift. We all carry around our own personal versions of D, but we must not forget that today is a gift. A gift that we should treasure! It is ok to let the weight of it all wash over you from time to time, but pick yourself back up and say, “In His time and in His will.”
In His time and in His will, Brad will be healed, our burden lessened and ideally sleep restored. 

Around The Bend

In less than 24 hours, Brad and I should know what the future holds. We jokingly tell people that our life is dictated by doctor appointments. We live from one appointment to the next. Well, this period is almost over. As we have many times before, we will anxiously await the doctor telling us what our next stage will look like. Normally, I have some expectations around the appointment – more scans, holes in Brad’s head, blood work and waiting.

Tomorrow, I have no expectations even though I have desperately tried. I have played every feasible scenario out in my head, but none resonate with me. None, actually feel like our life. As much as I try, it seems like a silly day dream. One that has taken a turn from the independently wealthy scenario into the “what if” world.

The problem is that I don’t even have a solid “what if”! Do you know how hard it is to Google, brain lesion/tumor/inflammation/mass affected by steroids not ___, _____ or ______ with characteristics and defined through scans as _____, ______ and ________. You literally read the weirdest articles that give no direction.

In my attempt to get some control, I read all 99 medical reports which have gotten me into a tailspin and a medical degree through WebMD.

For the first time in my life, I have no expectation or fake control over what comes next for us. I have to scoot over and give the wheel to God. I have to trust that while I can’t see what is around the next bend, He knows and has planned our trip every step of the way…snacks included! While I know this, it is still hard as I thumb through Brad’s medical record one more time. Maybe, they missed something that I a non-medical person can find. 😉

It is an awe-inspiring and oh so terrifying experience to not be able to plan or imagine your life after 11:20 am on Wednesday, January 4th. Tomorrow might be painted with the greatest relief and joy yet, or the gut-wrenching truth of this is the hard road ahead. No amount of worry, Googling or using my WebMD degree will change the words that come out of the doctor’s mouth.

For today, my intention is simple.

Trust in the Lord with all your heart, do not depend on your own understanding. Seek his will in all you do and he will show you which path to take. Proverbs 3:5-6

Tomorrow, God will share the path that he has chosen for Brad and I. One that we have patiently waited 96 days to be revealed. I pray for grace, acceptance and the ability to let him lead.

Thank You!

It is rare that I am speechless, but today I am. We are 86 days into our journey to determine what D is made of and I am continually humbled. Since October 1st, we have had many scans, blood draws, headaches, pills swallowed, sleepless nights, hundreds of missing words and two lovely new holes in Brad’s head. When you take a step back, it can be overwhelming and appears impossible that anyone could find joy in the journey.

Well, I like to tell people, I have never felt so blessed or stressed in my life. The stress part is pretty obvious. An alien is growing in my husband’s head, and we have no idea what it is, how to fix it or what our future holds.

The blessed part can seem a little less clear unless you are looking for it, and I have been searching. While searching for God and joy throughout this uncertain road, it became clear. YOU, yes I am talking to you, have contributed to the feeling of being blessed.

Since October 1st, we have had thousands of prayers from all across the world, kind words, meals dropped at my door, teary phone calls, countless words of encouragement and unconditional love.

Today, when we can get so wrapped up in opening the (insert toy here) we wanted, but remember to take a moment and be thankful for the gifts you receive every day. I am thankful for my little life in Florissant. My life that has a kitten in the window, giggling nieces and nephews, supportive parents, overwhelming support from friends, an understanding boss, the ability to still chase my dreams, strong faith in the storm and most importantly being Brad’s wife.

For everyone who has helped us along this long road, Thank You!

You have shown us the face of God time and time again. You have lifted us on days where the unknown road seemed unbearable. You made us smile when you shared your joy as I feared I would never have a normal happy life. You have given us gifts every day, and for that I am grateful. You have impacted our story! While I do know what the road ahead of me holds, I know that God has blessed us with you. Just as Simon helped Jesus carry his cross, you have helped carry our burden without complaint. You have opened yourself to walk on this path and share in both the joy and sorrow. You have emulated God’s love!

This Christmas season, I am humbled and grateful. Thank you for being part of our story. Merry Christmas!

I am an imperfect human.

crystal river

I am an imperfect human.

Regardless of who you are, I think this week was hard. Social media was filled with fear and hate, the sun is set prior to coming home from work and I know, my anxiety about to-dos was at an all-time high. While I try to not to get caught in the rat race of life, this week I was sucked in.

I am an imperfect human, and I was struggling.

My Dad reminded me of this concept during our now regular teary phone call. I was filled with immense guilt over snapping at Brad about our Halloween decorations still being up. That morning, my vanity was high and my compassion was low. The words slipped out and I was immediately field with regret. My Dad’s advice was oh so simple, but directly from God: “Nick, you are only human”. This small phrase helped lift the veil of struggle and pity that had covered me all week.

I am an imperfect human who wasn’t looking.

All week, I kept thinking, God where are you? Why is my worry so heavy and my burden so strong? I kept praying and begging for Him to help, but ignored His replies.

God never leaves us! He was patiently waiting next to me. Trying to reach me in my deeply imperfect state. He had not left me, but rather I turned away from Him and became worried with the details of life. While difficult for a stubborn controlling woman like me, He will carry me through with joy when I let Him.

To open the blind eyes, to bring out the prisoners from the prison – Isaiah 42:7

God used my Dad to help open my eyes, and simply reminded me that I am human.

I am an imperfect human who seeks to know Him.

Throughout this experience, I have learned that answered prayers don’t always look like what we want. Here I am begging for God to help me carry the burden and the answers were all around me. God was showing His love through many people reaching out, but I was caught in my own prison unable to see.

In this life, there are not coincidences. They are God moments! Here are a few from my week:

Prayers, prayers and more prayers. I jokingly tell people that Brad is going to make our community saints by the end of the year because so many people are praying. I am amazed at the power of prayer! I am truly humbled at those who are praying avidly for us through their own struggles. Their ability to show God’s face through their own burden is something I am striving for daily.

God’s timing is never wrong.  A few weeks ago, my Dad reached out to a family friend who is a missionary in Mexico. JD sent a quick note back saying he was praying for us and internet was spotty. This week, he wrote us a beautiful note. One that God had planned for this very moment.

“Faith allows divine love to break into this fallen world. This is an opportunity to grow in faith. God reserves opportunities like these for some of his closest disciples; let us show God that even when things are tough, we will not leave him. We will not abandon him.”

At this point, I am like OK, OK, I hear you. I know that you are with me and I have to focus on you to get through.

Nothing is lost when you have faith. I had faulted on my morning prayers this past week. With my inability to see God near, it was hard to pray. Of course, this was the week that I found my Jesus is calling book. I had put it in a safe place. 🙂 In all seriousness, I had been looking for it for 6 weeks and even had a new one in my Amazon cart. It was not lost, but tucked away until the time was right. The first reading was Learn to Appreciate Difficult Days. Again, I was telling God OK, OK, I hear you.

Then Jesus got up early in the morning when it was still very dark, departed, and went out to a deserted place, and there he spent time in prayer. – Mark 1:35

If we let ourselves out of the prisons was make and open our eyes, we will see God all around us. He was with my all week, showing His love and mercy for me. God will never abandon or stop loving me. It is my job to keep my eyes and heart pointed to him. He will carry me through with joy if I let him.

I am in imperfect human and I keep my eyes pointed to Him.

When I met her

One week ago today, I asked to see her. Yes, you heard me right, her. We named the tumor as a way to separate the struggles we encounter on this road. A good friend of ours and role model mentioned it in passing the other week that her husband and her separate Jan wants vs. MS wants as a way to keep frustration at bay. This, of course, was another gift from God as it was two days prior to D spurring her nasty ways. Brad wanted to cook me dinner after a long day, but D bucked up and prevented it. It is easier to accept the hardships when you think of D as an unwelcome guest in our marriage.

Again, you heard me, our marriage went from three (God, Brad and me) to four now that D has decided to join. I have heard a lot about what D might be and a lot about what she is not, but I wanted to meet her. I wanted to see the exact location that she camped out and how comfortable she had made herself.

This is what I learned from meeting D…

  • Brad’s writing is more profound now than ever before not because of his own talent. Yes, this sounds harsh because he is a brilliant writer, but D is pretty comfy in her reading nook. I have new found appreciation for his writing because it is clearly not easy and he is being guided on what to share. He feels inspired to share his story and he is being guided, I believe by God, on sharing his story.
  • Brad is the most optimistic person I have ever met. D is taking up a good amount of room and I imagine if roles were reversed, I would be complaining about her every moment. He takes her with stride and laughs at her every chance that he gets. Again, God is with us on this one as D alone should be driving a person nuts.
  • She has a big booty and that booty will be evicted one day, just not today. We will wait patiently as we determine who D is and how to gracefully kick her out of our marriage. Until then, we wait and pray. As my brother wrote after hearing the news, “red wine tonight and prayers, prayers and more prayers” This is the perfect plan to deal with D in stride.

I am glad that I met D. She is unwelcomed, big booty and making herself way too comfy, but it shows me how strong my husband and marriage is. We are blessed that throughout our unwelcome guest, we can find joy, share our story and most importantly be given the grace to wait for her eviction. I will celebrate when my marriage returns to normal as it should be; God, Brad and me.

Sleepless Nights

Brad’s snoring use to drive me nuts. So much that I would make jokes about smothering him with our beloved kitten. Now it is a comfort to know one of use is truly asleep. For the past month, our nights have started with pure exhaustion taking over and a wake-up call at an ungodly hour. We have found a sense of norm in our new hours, and taking turns on who is up half the night. I jokingly tell people it is good practice for a newborn baby when the time comes. Read more

My Husband’s Brain Tumor

Busch Wildlife St Charles Missouri

We are 22 days into this new journey, more needles than I would like to count, meeting our new BFF, CT and MRI at every turn, 2 nights in the hospital and one scar forming. We should be 22 days into the most terrifying journey of our life. 27 years old and faced with a tumor straddling language and reading. My two favorite parts of my husband. The parts that will last when the laugh lines settle in and our family is grown. The parts that matter when you are 80, sitting on the porch and telling stories about when we were kids and newspapers were actually paper!

Here we are 22 days later feeling more blessed today than the last. Stress fades a bit easier and finding the joy seems to come a bit quicker. 22 days of terms we don’t understand and unthinkable outcomes, turned into hundreds of prayers, unmeasurable love and God being everywhere we look.

At first, I am sure people thought we had lost our minds. How could we receive devastating news with unknown around every corner and still smile? How could we handle it with grace and faith that we will be ok? How are you accepting ok might not be the outcome we want? The answer is simple and oh so hard all at the same time.

God took care of us to this point. He prepared us in every way without us ever knowing it. I once heard, when you look into the rearview mirror, you can see how God has gotten you there. Well, when you are analyzing ever moment of your life to determine when the symptoms started and how you are feeling, you get to see the path a little closer up. Honestly though, there is too much good not to think that God will carry us through.

As I have since watching my entire future get whisked away into an ambulance, I pray not for my own desires, but to be given the peace and strength to accept God’s will. Something that is hard for a stubborn woman like me.

When faced with tragedy, you can ask why me or be thankful for what you have. Brad and I chose to be thankful for each other, our faith, family and friends. Thankful to love a bit fuller and get to do this crazy journey which some think is incredible grace and we now call life.