Guest post from my niece!

So, Brady is my niece...what can I say? LOVE that girl. I so wish I lived closer because I think we could have some great times conquering the world together. She's the reason I moved to California in 2001. I love her heart and always have. She thinks well beyond her 14 years and her compassion and conscientiousness always amaze me. When doing a report for her English class, she asked us if our story may be the subject. The theme was duality. I think the timing is great as this month is Luba's 1-year America-versary (arrived here 10/24/13). 

Here are her precious words: 

When I was little, my mom told me that it was wrong to take something that didn’t belong to me. I took this in the most literal way possible - if that boy over there was reading a book, that was his book. If a girl over there is drawing with colored pencils, those are her colored pencils. It seemed like a reasonable enough concept at the time. But as I got older it became harder to judge what belonged to whom. Not everything is as concrete as a book or some pencils. Maybe it becomes their family that is now yours. Or your family that is now theirs. When you’re in a relationship with another person, how do you determine how much of them is yours or how much you must give up to be theirs? If someone gives something to you, can it be considered taking? As I’ve learned from my aunt, the other side of gaining, it seems, is losing.

My aunt met her husband while on a mission trip in South Africa. It was both lucky and unlucky. Lucky, because she found him. Unlucky, because she lived in Orange County while he lived in South Africa. A while later, my uncle, Luba, applied for a visa and moved to Orange County to live with my aunt. They were planning their wedding. I thought it was a beautiful story - perfect, even. But I had to think about this new member of my family. I had to think about how his life had been affected, in comparison to my aunt’s, in comparison to mine. I gained a wonderful addition to my family, while he lost his family in some ways. Luba is not able to see his mother any time he wants, or go and visit with his sister, to whom he was very close.  He did become a part of our family, but I can’t imagine that it was the same type of family he had in South Africa. Luba lost his culture but was introduced to ours. He lost his home; he lost somewhere he was very familiar with.  Despite all of this seemingly insufferable damage, Luba has said to me that my aunt makes it all worth it. When he describes her as gorgeous, inside and out, intelligent, amazing, and most of all worth it, it causes me to rethink about the concept of gaining and losing. Maybe the other side of gaining isn’t losing. Maybe it’s backwards. The other side of losing, I’ve realized, is gaining. For everything you lose, you gain something that helps you to grow. All of this does not make their story any less beautiful or perfect, it just embodies the concept of gaining and losing in a way that goes far beyond some colored pencils and a book.

And, isn't she gorgeous?! Of course, she gets those long slender legs from me!

 Love, Danielle

Recovery & the lessons from it

I’ve been meaning to update regarding my recovery. Again, thank you for all of your well wishes, texts, prayers, and food! I have been speechless at most times at the generosity of my community.

My last post was about the surgery. I honestly think I’ve been in shock over the success!

So after the initial high and utter rejoicing over the success, I sort of plummeted. I had a really rough couple of weeks that started on the Monday or Tuesday after. I started having laryngospasms. Oh my word, I felt like I was trapped in a torture chamber that used to be my body. I could be mid-sentence and then have the constriction that would silence me then send me into a coughing frenzy. My vocal cords hadn’t even had much of a recovery after extubation and I was further irritating them with excessive coughing. By excessive, I mean that could be an understatement. I coughed all day. I coughed all night. No, I didn’t sleep through the night until a couple nights ago. I wheezed. My voice broke. Only a few sentences would come out before coughing fits began. I felt like I’d never have a normal conversation again. I had never had to FOCUS so much on communication. I had to carefully time sentences, coughing, length of utterances, and breathing. I was exhausted. I wanted to talk but it was so difficult and arduous. The increased coughing from increased effort just made my head hurt worse and my throat too sore. At times, I just stopped. Luba was fantastic. Sometimes, I just stopped and shook my head and he would continue. He ordered at the drive-through. He finished sentences. 

Talking, often for long periods of time, is my job. Singing kid songs is part of the gig. How was I going to continue and be decent again? I prayed and prayed that this would be temporary and steadily improve as I read more and more how some struggled with this still, after 5 years, after 10 years. Sometimes, people cough until they vomit. They’ve have to leave restaurants due to coughing incidents. Even though my surgery was successful in that no nerves were cut, there’s always collateral damage. We are so intricately designed. The only “catch” that is really left is an inability to move my arm in one direction. I can use it functionally and move it in full range of motion for all directions but one so I’m awaiting a PT evaluation for more information and treatment.

The recovery time, although hard for a few weeks, was a great time for Luba and I to catch up on lost time. Since he arrived, it has been a whirlwind of visa completion/interviews, wedding preparation, studying for the BCBA exam, and medical appointments. We’ve had little time for conversations, dreaming, discovering, and exploring. This time of rest allowed us just that. We were able to get away to Solvang and San Luis Obispo for a couple days. I could cough anywhere. I could feel like poo anywhere. So off we went! It was therapeutic.

When I returned, I found out that I passed my exam. I’m still in shock. I went in that day to the 4-hour DIFFICULT exam just off 1 week of sickness. No studying. I had saved all the hard material to prep that week. Then, the weekend before the exam brought 2 urgent care visits. I was hit hard. I couldn’t take any medication for a migraine that had crept up because the exam was within the week before my surgery so I took the exam with a cold and severe cough along with a 2-day old migraine. But, BOOM! Passed! This was the hugest relief because I failed my first time. I went in prepared, confident, and ready. This was one of my biggest lessons in humility. So now, Luba and I can spend our weekends like “normal” people. The weekend is ours. No studying. No stressing. I’ve been working on this “hurdle” with classes, fieldwork (1500 hours while working full time), or studying since 2011. It’s hard to believe that this portion is really over.

I’m now back at work as of Tuesday. It was great to get some structure and schedule again. While I’m happy that I caught up binge watching Orange is the New Black and Homeland, my mind needs momentum throughout the day. I work in 2 modes—machine-like fast & efficient or sloth. There’s no in-between. I got a very warm welcome from coworkers, parents and kids. It was the kids that I was happiest to see. One high-schooler literally beamed from ear to ear and shouted. How can receptions like those make you lose sight of what you are there to do and the impact one can have relationally? 

Recovery and being on disability have been my teacher. Here are just a few thoughts from many and “I wanna’s” stick out from the recovery period:

1.     Follow up in life. I try to do this during deaths. People get a lot of attention and assistance until the funeral and then attention tapers off. Unfortunately that’s about the time when the shock wears off and reality sets in. I want to be better with the follow up—after surgery, after a miscarriage, after a death, after job loss. Go the distance. Check in after the dust settles because I bet you could be the only one. It just happens – not intentionally. Remember the anniversaries of these events. I think those can be the hardest. I wanna be better at this.

2.     Life’s kind of like a relay race. Sometimes we are running. Sometimes we are waiting. Sometimes our turn is not anywhere near yet. But we are all connected. Sometimes we run a bit next to the other person to gain momentum before we pass that baton and watch them speed off. Experiences are like batons. Hope is a baton. I ran my portion and I must pass on my story. Someone is waiting on it in order to finish their portion of the race.

3.     Better perspective. I try to always have a wider perspective and often times do well. This health journey was an experience like that to look past myself. I was mad, scared, hurt, you name it. But, I always knew it's not just about me. I always felt these internal dialogues in my spirit.

What if I lose my vocal cord? It’s “my thing.” It’s my job.

Then what?

Well I won’t be able to talk loudly and the volume outcome will be unknown. I am scared of losing my career. It would mean more surgeries and injections. 

Well then you can write that book you’ve dreamed of. People like your writing. Use that. You went into this profession because you knew communication was so much more than a literal voice.

What if I lose arm function?

So?

How will I get dressed? Write? Do daily activities?

There are people born without an arm or both. They never had life with one. They eat. They dress themselves. They live life. There are people with no legs. People lose limbs every day in the bravest of ways. Do you think you deserve this more than others?

What if my face is partially paralyzed? Everyone wants to like what they see in the mirror.

Seriously? (I think the Heavens shook in laughter) You’ll be just as beautiful. People live like that every day, and worse. You choose to like what you see. In reality, few people “like” what they see. Noses are too big, crooked. Wrinkles are too telling. Beauty is shown, not seen. Bright side: you'll have that voice you are so worried about. Make up your mind.

What if I’m physically just… “broken?”

You’ll still be okay. You are strong. You will figure something out. You’ll probably write some sort of manual or blog about it.

I always felt this message of “I hear you” or “I love you” but followed up with “you’ll be okay.”

The hardest feedback to hear was: “It’s not about you. It’s about me.” It’s sometimes hard to remember that it is as simple as that, or has to be, for us as Christians.

4.      Gratitude. I did come out with all of my function. Thanksgiving over that is every single day throughout the day. I’m thankful for my faith and my unique relationship with Jesus. I’m thankful for all of those quiet moments and assurance I received. I smile each time I remember those- even just being wheeled into preop room 7 (explained in last post). I’m more grateful than before of little things, and I’m so much more grateful for Luba. I thought I was before, but seeing him in action during the diagnosis process, surgery, and recovery, I’ve been in awe of his dedication, sacrifice, and courage. I always say this but he’s the kindest person I’ve ever met. He’s never complained or put his needs first.

5.      Empathy. I return to work with a new perspective but newly found empathy for clients and parents. I’ve learned to slow down and explain more during interactions with parents, specifically during evaluations. Unexpected news is hard to hear. I know this. Even when you know terminology like I did for my specific case, you still want to cut the jargon and be spoken to like a human. For the clients, I’ve learned to ease up and let more things slide. I’ve learned to be quiet and not try to fix everything (because that is part of my job). Wait for the person to ask for help, and in the meantime, LISTEN. At the moment, I still struggle with a communication disorder secondary to the surgery/recovery. It’s getting better daily and will subside but I feel how hard it is physically to focus on talking and formulating my thoughts all the while trying to move past any embarrassment or self-consciousness. I’ve experienced the “fix it” people (with good intentions) who start interjecting offering water, or something else. I have felt the times when you just want to forego the message because of the compounding factors or you avoid opportunities to communicate altogether.  

So, again, THANK YOU for your part in this recovery. No part is a small part.

Now, let’s get to celebrating, shall we?

Here’s to living life to the fullest, celebrating every day, going the distance with friends AND strangers, choosing to find new perspectives, and running that relay race and sharing that baton with others!

Love,

Danielle 

Surgery Day! 9/4/14

Has it almost been a week already? I’ve wanted to write this post but have honestly been too emotionally overwhelmed and in shock that this is really over. Medically uneventful. Miraculous. Short. For a few days, I would just look at Luba with a questioning look as if waiting for the other shoe to fall.

You can scroll back a few blogs for more background on what I had going on or what I was feeling. Basically, I had a very rare tumor called a vagal schwannoma. It’s on the “main dog” cranial nerve. Removal of the tumor promised vocal cord paralysis and temporary-permanent difficulty swallowing safely. I had surgery scheduled for March to “cut the nerve” and remove the tumor. Luckily, I’m one who researches and is slow to trust medical professionals when my “inner voice” or gut feeling is screaming inside. I ask a lot of questions and need adequate answers to feel satisfied (which is reasonable and should be the case for everyone). Something didn’t sit “right” and some medical professionals bravely chimed in along the way encouraging me to wait and further explore options.

Some questions to the initial surgeons in February:

Can I wait until after the wedding in April? No

Is this an emergency? Yes

Is there any way to do surgery and save the parent nerve—such as leave a small piece? No

Will I have a voice? It will be between a whisper to very hoarse.

What about the scar and my wedding? Photoshop does wonders for pictures.

After excruciating months waiting, fighting and experiencing some awesome mini-miracles and promises along the way, I got into UCI and had highly specialized surgeons on board to assemble my surgical team and they were willing to listen, collaborate and offer a newer medical procedure called intracapsular enucleation (IE). They actually offered the choice between “watching and waiting as there was NO HURRY” or surgery. Surgery was the best choice for me. That question about saving the parent nerve? Oh yeah, that’s IE. Based upon my conversation with the top surgeon performing this procedure in the USA, about 50% of surgeries with IE can result in minimal effects and no vocal cord paralysis. To date, he has seen no regrowth from the tumor piece that is left on the nerve in his cases over the last 30-40 years. This was what I felt most comfortable with in terms of treatment and moving on with little worry. Many choose to wait since it is benign and the procedure is risky.

Fear of course crept in from time to time but I always felt God whisper a couple things:

I’ve given you this voice. I won’t take your gift but I will enlarge your territory.

It is done. “It is done” is something I felt on a daily basis no matter how I was feeling. I just felt like I was given an inkling of foresight although I wouldn’t know details.

I prepared for this battle for months. A battle for life, for freedom is exactly what it felt like. I joined a FB group with those with the same diagnosis. Some have had surgery while others are waiting or are in the process of having surgery. It was nice to be in an online community where others understood my every feeling. They were transparent regarding their experiences and post-surgical complications whether temporary or permanent. I researched, I fought systems and procedures (including the insurance company), I prayed, I bathed myself in healing scriptures and songs, and I assembled a prayer team that would serve as the Navy Seals in the spiritual world. For every moment that I was under anesthesia and in surgery, there was someone designated to pray for 15 minutes up to 1 hour. It was a carefully assembled team of those who were able to commit to drop everything and ONLY intercede on my behalf. They prayed for the surgeons and surgical teams. In addition, there were countless others who prayed as time allowed or as the Spirit moved. There were churches praying – churches that I have never attended or heard of. Moms and Grandmas that I do not know personally were praying. From one end of the earth to the other across time zones, people prayed in unison. I can only imagine the thin line between Heaven and Earth in those moments. The thought of it brings tears every single time. The countless texts with scriptures about healing just solidified what I already knew. Those texts have rolled in along the way and continued throughout the morning of the surgery. So many made sure that I would receive those messages before going in. That experience of community and “an army assembled” is truly indescribable.

My mom drove in from Mississippi and arrived Tuesday night before my scheduled surgery Thursday. We all checked in to the hospital at UCI by 6am. I felt eerily calm. Maybe sleep deprivation helped? The staff was quick to check me in and get me started. I was so thankful because the waiting was the worst and waiting had gotten so old by this time.

They came to get me and walk me into preop. I giggled as I saw the room I was headed to and heard the nurse say “I have #7 checking in.” Seven. My favorite number. Of course, I was in 7. Seven has significant spiritual significance and represents the foundation of God’s word. It is the number of completeness and perfection both spiritually and physically. “It is done.” A wave of calm and peace washed over that cannot be explained. I was ready. I had been obedient. I had listened. I had stepped up to the line as far as I could go and I knew that God would complete the rest in a most miraculous way. My favorite line from one song that became relevant for me (It Is Well by Bethel) was:

And this mountain that’s in front of me
Will be thrown into the midst of the sea

We had some fun in preop as I waited for the surgery time. My mom, her husband Joe and Luba stayed in before Mom and Joe left in order to leave Luba and I with some last moments of quiet. I’m thankful for those few sweet moments of vulnerability. I loved the anesthesiologist team and they went above and beyond for my comfort and finding the best for me including searching for a smaller endotracheal tube (and she scored the last one in the hospital AND negotiated it from the person about to place it in a man). My endotracheal tube was larger than average due to the nerve monitoring features. I was wheeled into the OR by the anesthesiologists and then O-U-T with no warning or countdown. I asked the nurse to take a picture of the tumor and then I woke up in recovery. Maybe they shut my bossiness up because I had also reiterated that although I did not care who watched what, I did not want residents touching any cranial nerves. This procedure was tricky enough and saving my vagus nerve by highly specialized surgeons was described by one as “dicey” although they would do their best.

I can’t describe the feeling of facing the unknown before going under. With most surgeries, you have an idea of the aftermath of the procedure or you know WHAT is coming out. For me, they couldn’t identify the cranial nerve to which it was attached with certainty but I knew it was “probably” one of 3. If it wasn’t the vagus, I knew they wouldn’t salvage the nerve and I would wake up with paralysis of some sort or deficits. Because of the importance of the vagus, they would spend time to avoid disruption to this one only. Still, I knew that I may wake up with some deficit and I knew it would still be “okay.” I was aware that when God assures you that you will be “okay” it may not be in the way you expect. I knew the learning curve all too well of how long it takes sometimes to realize that you ARE okay and there was a plan all along. Still, “it is done” washed over each thought and fear.

I had two teams for my surgery. Although this tumor did not appear to be malignant, both teams are specialized in oncology and neck/skull base tumors. An ENT team did the opening/closing and navigated TO the tumor. She had to get to the tumor without damaging other cranial nerves along the way as well as major arteries and veins (the tumor was nestled by my carotid artery and jugular vein). The neurosurgeon used a microscope to perform the surgery on the tumor/nerve. All nerves were monitored throughout. The surgery took less time than expected being between 4-5 hours surgical time.

I woke up in recovery, alone with a nurse. I have never felt as vulnerable as that moment. What was my new reality? She said they wanted a few minutes with me before calling in the family. The first thing I did was check my vocal cords. I cleared my throat. I thought of something to mutter to the nurse. Was this real? One of the surgeons came in and asked me to stick out my tongue and then to vocalize. She left. I asked the nurse if I lost any function. She said no. My mom and Luba came in. I was still groggy but could see by Luba’s expression that something must be “big.” I then questioned facial paralysis. He asked if I had seen “it” yet. I had not. I assumed it was bandaged but it wasn’t. He took a picture so I could see. These are the pictures I saw—my first glimpse of the surgical site.

Shortly after, I went to the postop room where I would end up spending the night. When I went to the room, I asked for water and was offered a clear diet. I devoured that plate. The ENT team came in to check in. I was immediately bumped up to a regular diet. Really, no swallow study?! A few hours after this risky surgery, I was eating a quesadilla and drinking coke all the while  TALKING to my mom or Luba.

I had no pain other than that migraine that had been following me for weeks. I had no sore throat which was promised to me by the anesthesiologist due to the size of the tube. My mom spent the night with me – no cot, only a hard chair. I so miss family. This time was a gift. With who else can you be as vulnerable? By rounds the next morning, I incessantly asked when “check out” is. I was ready to take my grateful heart home.  At noon Friday, they removed the drainage tube (Ouch!) and discharged me. I was headed home in less than 24 hours after the surgery concluded. I had a bandage to be worn for 24 hours while the drain tube site healed and then removed with no further covering.

Since being home, I’ve experienced minimal pain. I’d describe it as “discomfort” from time to time as the site heals and itches and stretches. Daily, swelling goes down and range of motion increases. I have had barely a sore throat here and there. I’ve eaten everything I have wanted. I’m just trying to be still (SO hard for me) and continue healing. I know an infection could result from carelessness. I’m careful to avoid lifting or straining the neck. All of this? Pale in comparison to what real possibilities were.

The scar? HUGE but I’ll take it. It reminds me of provision. It reminds me that I’ve been entrusted with yet another miracle. It reminds me that I’m loved in the Heavens and across the Earth. It reminds me that I have a story that must be told. It reminds me that I’ve been given much and with that gift comes expectations and duties. It reminds me to love better, stop and smell the flowers, and worry less. It reminds me that we all carry an unseen burden so lead with kindness and grace. It reminds me that even in my darkest times, a host of people will come running with their lights to show me the way, fight on my behalf, and love me through the process. The scar reminds me that humanity is good and we are one. Will I hide it? Never.

Thank you for your part in this journey. God did this, but He worked through so many of you in a very tangible way.

With a very grateful heart,

Danielle

Extra pictures (warning: "IT" is in here)

who I felt like when I checked IN to the hospital for surgery

Mom & I spending time before surgery day 

"It" aka "Testy"

Hooray! It's over! And I can eat hot dogs! Much needed play time awaits Luba and me

Proudly sporting this scar, standing next to the best choice I ever made

The BIG DAY is almost here! Good-bye "testy!"

Well, I wanted to update once more at least before the big day, surgery, on September 4. I’m so very grateful that so many are in my corner, on my team, gathering the Earthlies and Heavenlies together. Prayer support has spanned the globe. How cool is that? I am loved beyond measure. People are praying that I do not even know. I have never met some of the people who are spending quality time interceding on my behalf. Stop it-it’s too good (don’t really stop it, you know what I mean).

Luba and I went to preop Friday to take care of paperwork and have some tests run. I shuttered a bit as she recalled surgical risks. I’m not even going to put them in writing but they are very real and can be permanent in nature. As for as health and preparedness, all looks good and we are ready to go next week. My stomach turns as I say “next week.” Is it really here already?

Speaking of stomach turning, I was really hit hard this weekend. After I got home from preop, I started feeling poorly. Well, actually, I was light headed all day last Thursday. By Saturday morning, I had a nasty cold. Being the proactive person I am (and over anxious to not delay surgery), I hit urgent care early and got some staples to kick this virus. With that medication regime and your sweet prayers, I was healed ever-so-quickly by Saturday night. Then, I woke up Sunday with EXTREME stomach pains that came in waves and were so intense that I would sweat profusely and nearly vomit and pass out. Luba also noticed a weird red patch on my arm that quadrupled in size during the night.  Back to Urgent Care I went. I did earn the “Duchess” award on yelp for my 2 visits in one weekend. Bam! Stomach flu. Bam! Cellulitis. Does anyone under 60 have this? It just sounds like a more mature illness. Needless to say, constant pain with waves of piercing pains (that send you bent over or to the fetal position) coupled with the inability to eat or sleep can wear one down physically and emotionally. It’s those moments when vulnerability really sets in. It sneaks in like a thief during those wee morning hours when all is quiet and appears serene and you are lying there in pain (whether emotionally or physically) as if you are the only person in the world or awake. So much is simply out of our control. In those moments, fear and doubt so easily creep in and often comfortably settle in to our souls. It was in those moments, that the surgical risks began to replay in my mind. I had to remind myself that I’m going to be okay, and in those moments it wasn’t easy. Faith is a choice. It’s like looking in the pantry to find that can of rotel tomatoes (for the Southerners) and you keep being bomarded by other cans of things you don’t need falling out. You have to move cans, shuffle things, but keep looking. There it is! Way back in the back corner! You have to reach, grab a step stool if you must, and pull that baby out! Got it! That was me. I had to reach past those loud voices coming in shouting the likely risks and “what ifs” and hear again that still quiet comforting voice that says “you will be okay. I’ve got this.”

It was my last weekend that I kept totally open to study for my licensure exam coming this Saturday (8/30). How will I pass this thing?! I banked on that time frame for the last portion that required my full attention. Passing that baby will be a miracle on its own! I’ll take it and do the best I can. Some things are just out of our control. That happens. Just do your best with what you have.

Y’all, can we all just take a moment to celebrate Luba?! God bless that man. He came here last October just in time to ride this roller coaster of watching me study-fail the exam-recover-freak out-study again, medical appointments, tests, and illness. He has learned more about the American health care system and insurance than he ever dreamed. He has been so patient and understanding. The support has been unreal. I contribute my strong stand and perseverance to that guy. A gem. A gift. When this is behind us, I’m hoping we can finally share some FUN adventures together like short day trips, road trips and just enjoying the CA weather and lifestyle, very few of which we have been able to do since his arrival. We’ve wanted to host more dinners and spend more time with others but just have not had the chance. We have had marriage boot camp and I know we are better for it, but dang, can we just get a break?!? You can just see how kind he is by his sweet face. I'll not mention all the mockery that has gone on in this house this weekend--which is NOW funny, now that I'm on the mend.

Throughout this all, I'm reminded to celebrate: 
Health. Love. Second chances. Companionship. Friendships. Prayer support. Being able to speak. Moving from sharts to farts (oops, did I just say that? Stomach flu win). Adventure. Life.

Go celebrate. Press onward. Believe in miracles. Eat more rotel tomatoes in your recipes.

Putting my trust in UCI physicians but my faith in the Great Physician – thank you for covering me so completely,

Danielle

P.S. For those of you who don't know what rotel tomatoes are, you should learn. Top shelf in grocery. $1 can. Throw those in a chicken spaghetti recipe (Southern potluck fave) or warm Mexican dip in the crock pot. I’ll teach you. 

I needed a loofah. This may be the most expensive one I have ever purchased. My wash regimen for a few days before surgery.

Being Brave

If you are just tuning in, you may want to catch up with a couple posts (this one & that one) to know what is going on.

Caught up? Welcome back! Thank you for checking in and keeping up with what is going on.

I think my last blog post regarding my medical journey was that I finally made it to UCI and was seeing the ENT surgeon that I fought for and was given the decision of “wait and watch” or surgery. I’ve decided to continue with surgery. If you know me, you know that I do not “wait and watch” well. For me, I need the facts. I need to face the wall and move past it. The hardest part of the past 8-9 months has been wondering about the surgical procedure and aftermath. I need to close this chapter and move on with life. This can’t own me anymore. Another huge factor is that I know I’m going to be okay. I’ve had so many “Only God” moments that have given me peace throughout the process. I’m not alone. I already feel this “It is done” feeling in advance.

I just received my date for surgery: September 4 @ 8:15 a.m. (Thursday).

Before I went to the GodChicks conference this June, I had been thinking for months about the word “brave.” 

I had recently introduced it into my vocabulary at work, speaking it over my clients, in lieu of superficial adjectives (which stems from this post). Unbeknownst at that time, I’d need this word myself. How would I know that I would need it spoken over me almost daily like an anointing, a confirmation, a declaration? How would I know that I would choose it as an anthem, so to speak? When I went to the GodChicks conference, I chuckled when I saw the theme: Be Brave (Oh God, you stinker, you always drop these nuggets in for me). I knew I would glean so much from the weekend when I laid my eyes on that word, my word. It felt like I had been administered a booster shot to continue on with the sustenance I had gotten (and continue to get) through words I’ve been given from others, only-God moments, prayers, and messages whispered to me through prayer and quiet time. There are always small gifts & tokens that we are given at the conference but this year they were far more meaningful and served as daily reminders. What you surround yourself with matters.

The word BRAVE and what it means really became personalized a few months ago. One evening in the middle of some difficult emotions, I just prayed. It was all that I could do. I honestly prayed to see Jesus in my dreams. A bit lofty but I was desperate for something. For some clear message. Anything. I went to sleep - expectant. I awoke in the morning a bit disappointed because it was not what I had anticipated. Had He not heard? It felt like an extension of my work day. In my dream, I had seen clients’ faces. I had seen families’ faces. I saw them as they journeyed through the emotions and stages of grief that often comes with a diagnosis. I saw them smile with each milestone reached. I saw gratitude. I saw joy eclipse every other emotion. I saw myself working with them equally rejoicing over the tiniest step toward something bigger. I saw myself celebrate steps that I used to overlook. Then it hit, “You DID see me. Just like you ‘get to’ see me every day.” I’ve always said that I feel I meet Jesus daily. He’s in the desperate parent. He’s in the child that has to work much harder to meet milestones. He’s in the child who may never meet certain milestones. He’s present when we celebrate tiny steps in lieu of “big” milestones. I realized that I’m blessed with daily inspiration. I am surrounded by BRAVE people every day, almost as if they are already whispering encouragement back to me by just allowing me to be part of their journey. For a long time, they have modeled bravery in its highest form. Through this journey, “the teacher becomes the student.”

Storms come. Bad things happen. We can’t avoid them. We just have to brace ourselves and keep walking, which means walking toward the giant, the storm. Control typically is not in our bag. What we can do and can control is our perspective and make choices. Choose joy. Warrior up. For me, I’ve chosen to “be brave.” I’ve chosen to find joy in the midst of the heartache, disappointment, and range of emotions. I’ve chosen to believe when I can’t see. I can’t wait & watch. I can’t bask in a pity party (well, sometimes I indulge myself a couple minutes here and there). There are people on the other side of this battle waiting for my experience. There’s glory that will be witnessed. This is part of my story- a chapter I would not have chosen of course – but clearly one that is essential for the rest.

I’m constantly reminded by the verse that my mom always shared with me and I’m using it as my “battle guide”:

¹⁴ Stand firm then, with the belt of truth buckled around your waist, with the breastplate of righteousness in place, ¹⁵ and with your feet fitted with the readiness that comes from the gospel of peace. ¹⁶ In addition to all this, take up the shield of faith, with which you can extinguish all the flaming arrows of the evil one. ¹⁷ Take the helmet of salvation and the sword of the Spirit, which is the word of God. ¹⁸ And pray in the Spirit on all occasions with all kinds of prayers and requests. With this in mind, be alert and always keep on praying for all the Lord’s people.

Ephesians 6:14-18

For me, I am choosing to continue to find joy and see and focus on the Only-God moments that come as I keep walking onward- straight into “it” (one could even add a –sh to “it” and get a feel for what the situation is). I have surrounded myself with various levels of support—from the friends to the strongest of prayer warriors that have committed to praying daily. A strong team of prayer warriors have signed on to pray literally through every. single. moment. of the surgery. How amazing is that?! People have chosen to pray fervently for 1 hour. An hour! I can scarcely process this love and support. I’m literally streaming tears as I even type that. To keep up my own encouragement, I bathe myself in verses about courage/strength/provision and listen to worship songs. I have to battle the fears, which are legitimate. There are some very real risks involved; however, it is out of my control. This is an unfortunate situation in which I find myself and I am aware of the risks but I have to move forward and press into it with positivity. Of course, the risks and fears are not dismissed or ignored but focusing on them is too harmful. It breeds unnecessary and unrealistic fears.

I’ve just come across this song by Bethel, “It is Well.” Listen to it here to hear how just how beautiful it is but the words are themselves like an anthem.

Verse 1
Grander earth has quaked before
Moved by the sound of His voice
Seas that are shaken and stirred
Can be calmed and broken for my regard

Chorus
Through it all, through it all
My eyes are on You
Through it all, through it all
It is well

Through it all, through it all
My eyes are on You
It is well with me

Verse 2
Far be it from me to not believe
Even when my eyes can’t see

And this mountain that’s in front of me
Will be thrown into the midst of the sea

Bridge
So let go my soul and trust in Him
The waves and wind still know His name 

It is well with my soul
It is well with my soul
It is well with my soul
It is well with my soul

Thank you for your support and encouragement.  It’s truly a gift.

It is well.

Love,

Danielle 

P.S. If you have the gift of time on the surgery date and you feel called to serve in this manner, please contact me for a doodle request to come on board the prayer team!

Learning to wait

First of all, I’m so appreciative of those who read my last blog post. I’m humbled when people actually read all my random thoughts and updates. Secondly, I have survived on the subsequent comments, well wishes, emails, texts, and visits with me all the while teary-eyed as you told your own story and mentioned threads of mine. All of our stories are interwoven. You see me, you hear me, you care. It’s truly a gift.

Today is the 4^th of July. Freedom is the theme of the day. For me, it’s my “word” this year. I’ve been experiencing freedom in ways that I could not imagine – most of it has come through vulnerability. The hugest freedom has been loosening the chains of “control” in my life. I’ve been moving, slowly (sloth-pace), from the driver’s seat to the passenger’s seat. Okay, maybe I’m “riding the hump” (sorry, had to add a country phrase) or straddling between seats, but I’m moving.

I woke up this morning with just an overwhelming peace that I never thought I would fully embrace or grasp—the peace of submission, of waiting, of letting go. Some of you know bits & pieces of what is not said publicly in the blog and you can affirm the fact that God speaks tangibly to me. For me, there’s no way I could not believe because I’ve had way too many “Only God” moments, ones that leave both the believers and the non-believers stumped or with “chill bumps.” It leaves some shaking heads and shrugging, “How does this happen to you?” The beauty of it is….that I know. I know I’m loved. I know I’m created for a purpose. I have grace. I have provision.

For the past few years, I feel like God & I have had a very special roller-coaster-ride, patience-teaching, submission-inducing relationship. I’ve been able to yell back, rest, cry, throw things, high five, laugh, question—all the while knowing I’m loved beyond measure, taken care of, and will continue to be taken care of. I’m infuriated by the Christian-ease shown when people show real human emotions. I am enraged with hearing “give it to God,” “if you’re worrying, you’re not praying,” etc.  I cognitively get all those things but I appreciate my relationship which allows me to be human, the way I was created. I’m allowed to have emotions—be scared terrified, sad, angry. I’m allowed to process these AND know that I’ll be okay. I know I have a resting place that I’ll nestle in after the occasional internal emotional fight.

How did I get here? Me- the control freak, detail-obsessed, must-know-timeline beforehand to begin, do-it-quick-and-check-it-off-a-list person? Simple: Repeated tangible moments that are undeniably “Only God.”

For some reason, I woke up with one of my earliest happenings on my mind. There are many “miracle” stories in my childhood. One that played out as I woke was being in a car accident at ~21. I was driving home via “back roads” from Alabama to Mississippi after a hair appointment. For months earlier, I had been thinking that I should learn the names of roads in case of emergency (at this time, we had recently gotten all roads renamed/named for the 911 system). I came around a curve in the road to see a car in my lane. It was a woman driving, and her child was standing in the seat next to her (don’t even get me started…). There was no way I could hit them in any way. My first thought was the child. I swerved and missed. No biggie—until I went to get back on the road. My car hit loose gravel and I began to swerve from one side of the road to the other, quickly losing control of the car. At that moment, I felt the spin. I could see flashes of trees, houses, familiar landmarks. I felt the car slide up a slight embankment. Those few seconds felt like an eternity. For some reason, logic kicked in. I held my legs close to the seat (flashbacks of broken legs from locked legs extended to the pedals from in auto safety classes in school), took my feet off the pedals, gripped the stirring wheel, and held on. I felt the car go up and then start to flip. One of my worst fears was slowly (although I’m sure quickly) being lived. Then, it was realized. The car flipped and rested, upside down. My first thoughts were to get out—I’d be so upset if I was okay and then the car caught on fire or something. I had no idea what the condition of the car was like on the outside. I unbuckled my seat belt and fell face down on my opened bible that had fallen out of the glove box (1 regret in life? not looking at the passage!). I couldn’t orient myself to get the passenger door open – who’s used to opening the door from upside down? I called 911. I didn’t freak out until she said “Where are you?” and I couldn’t answer. What were the names of those roads??!?! I couldn’t read the small sign from so far away. I tried to explain where I was in terms of landmarks and other major roads. Reality hit when she said “Don’t worry ma’am, we are looking for you.” I knew she had no idea where I was. This is a low traffic area in this time of day as well so I knew that no one was coming quickly. Suddenly, two guys that looked like convicts (understatement) drove up. I panicked. But, reluctantly I engaged them. I asked them to simply open my door so I could crawl out. They did. I was thinking “now what?” so I remained on the phone with the 911 operator (God bless these people). I joked and told them if they had anything to hide then they may want to get on down the road as the highway patrol was on the way. I kid you not, they bolted like a flash of lightning. By this time, I was able to read the cross streets and emergency personnel were on the way. The volunteer fireman from down the street showed up. I asked him to please cancel any ambulance and have only the highway patrol arrive. He did but I heard him on the phone—“I think she’s okay. She looks okay. She wants to cancel the ambulance so her dad doesn’t get billed for an unnecessary ride. She’s making jokes.” Because of my “kookiness” from being so freaking glad I was “okay” they assumed I had a head injury. The volunteer fireman said he didn’t want to come to the scene after the call because that “curve gets everyone” and “most people wrap themselves around the tree.” You see, I missed the trees. My car slid right through, hitting nothing. I had no scratches. No glass broke. I didn’t hit my head during the spinning and flipping. I was the first person in an accident per his knowledge that wasn’t seriously injured. Purpose? I knew I had one. This moment was loud for me. Provision? Although it wasn’t my first taste of it, it was my most flavorful.

Most of this “learning” however began with my visa journey. I had only so much control. I could control submitting paperwork and some details. My attention to detail and organization could shine in the execution of paperwork. The rest—approvals, dates, requests for additional info (the important stuff)—was out of my control. We worked by a timeline that either caused feelings of elation or desperation. None of it was “approximate.” All in all, most of our steps were completed or approved in 50% of the time expected which is what I prayed for. The ones that weren’t, however, were very delayed. Actually, I prayed for a quick trip through this dreaded timeline but I also wanted our story to be a reflection of God’s presence in our relationship and to highlight things that only He could do.

I’ll share one of those moments that was one of the most profound for us. Luba’s police clearance was delayed. It was our final piece of paper before a last submission to the embassy to get scheduled for an interview. Calls were made. In turn, false promises were made. More calls were made. More promises were made. No police clearance came. Emotions were beyond definable at that moment—we could do nothing, nothing but pray. Our friends & families prayed.  Luba was working with the police academy and set out for an assignment that was changed at the very last minute. Instead, he was to take a couple people to the airport. Of all of the people that could have landed in the back seat of the car, she was the ONE we needed. She could assist us with our missing paperwork. She was a high government official and in charge of this very thing. She heard our story. She exchanged personal information with Luba. By the beginning of the next week, it was in the mail to us and we were on our way. (Long story short: she saved us from waiting for paperwork that was never coming without some bribery & corruption involved and months of delay). At that moment, I began to really set up camp and rest in a verse that had been shared with me by my friend April Diaz much earlier:

For the revelation awaits an appointed time;
    it speaks of the end
    and will not prove false.
Though it linger, wait for it;
    it will certainly come
    and will not delay.

Habakkuk 2:3

When my medical journey began, I started out again as who I’ve always been. I had to mentally run through a timeline with steps to “get this tumor out.” Again, everything was already lined up and revealed little by little. It was proven yet again that His ways are better than mine. Had I gone by my course of action, which was logically and medically sound in nature, I’d have the tumor out now but would definitely have some permanent neurological effects. The surgeons were not trained and appropriate for my case. I would have entrusted my voice to sub-par physicians and surgeons all the way around. I had trusted them, and they had been wrong – all of them. I was reminded of Habakkuk 2:3 each time a delay occurred—insurance mishaps, that yucky feeling in the pit of my stomach knowing something wasn’t right, the anesthesiologist on the case that urged me to get a 2^nd opinion even though surgery was scheduled, the ENT who is a specialist and told me to wait, the fight with insurance. It even occurred as the #1 surgeon (out of state) for this rare tumor contact ME to be of assistance after he read a Facebook post. Seriously? He contacted ME after I had researched him online, wished for his opinion, and gave up the thought of contacting him when I didn’t find an email address online. The very next morning, I woke up to a message from him which included his email address and some confirmation of questions (& second guesses trying to push in) that had been racing through my mind. A few months ago, I was grasping for any date for surgery. I rushed. Today when you ask me when surgery is, you get a nonchalant shrug and “Dunno.” I know it’s going to be scheduled on the right day. The right surgeons are going to be there. I’ll have my posse praying through every minute of the surgery. I will be okay.

A few weekends ago, I went to my all time favorite women’s conference in LA. I go every year. It sustains me until the following year. This year, the theme was “Be Brave.” “Brave” was a word I had been thinking through for weeks so I knew it was going to be good. And it was. One speaker, who is a Grammy-winning recording artist, recounted his experience of having vocal fold damage during intubation during surgery. It was refreshing to see him back up and singing, albeit different than before the surgery, and still living his purpose. He was there for all of us, but I knew he was specifically there for me.

One thought kept resounding in my soul all weekend:

I’ve given you a voice—what makes you think I’d take your gift?

You’ll speak louder after; your territory will be enlarged.

It is done.

I believe it. It’s mine. I claim it. I hold on to it. I wait for it. The right time will come and it will not be delayed.

Love,

Danielle 

What's REALLY going on? My last 8 months journey...

Deciding whether or not to write this post has been a significant personal battle. First of all, it lets everyone in—not just those that I chose by emailing or asking questions or eliciting to pray. As I think back on my word for this year “freedom,” it relates. My “freedom” will come, I know, through vulnerability. I’m good at being transparent with the past with everyone and vulnerable with the current with whom I choose. The connection comes in the present. I was saving my story for a “look what happened to me” and sharing the parts I wanted. I feel a tug to share now.

I could write for days the lessons I have learned thus far but I’ll just update all to the backbone of the story. The systemic effects of this reality have far-reaching effects that will go far beyond me and the now, and I know it will be another chapter in my story.

I don’t want to share it, at all. I need to share it.

Warning: it’s long!

I’m a Speech Pathologist, as most of you know. The neck is my bag. I know everything in there—where it originates, what innervates it, where it goes, etc. I know the structures. I know there is no “waste” in there. You need everything in there. I’m always feeling my neck area—weird, I know, but I do. [Who is NOT weird in some way anyway?] Last Spring, I started to feel that my lymph nodes felt different from each other. I asked around. No one seemed concerned. I assumed I was fighting something and didn’t know it. When you work with children 3 and under, you are always fighting off some “thing.” It never went down but only became bigger. It moved. It seemed more superficial than deep. The lymph nodes were asymmetrical. I was busy preparing for Luba and was neck deep in the visa process so I let it go.

Luba arrived in October (2013). Two weeks later, I got sick and that forced me to go to the doctor for treatment. He treated the primary issue that brought me in and as he was leaving, I asked him haphazardly to check my lymph node to see if he felt like it was as swollen as I thought. The look on his face was enough for me to know already that it wasn’t a lymph node we were worried about. He asked when I first felt it. He asked if anyone in my family had had cancer. I knew the other issue that I was just treated for was to get me in there.

The journey began…..

What timing! Luba had just arrived. As he became acquainted with the area, he was now being dragged all over Long Beach to medical appointments. He got to see me at my worst, right out of the gate. Our “newlywed” stage felt robbed. I had an ultrasound and subsequent MRI. When the MRI technician came in midway through to insert the contrast dye, he asked “Why did you wait so long?” I knew he had found a mass, and I knew it was large. I had consultations with neurosurgery and ENT. I had an angiogram to ensure it wasn’t connected to the carotid artery. I had another ultrasound guided biopsy on the mass for fine needle aspiration. It rendered nothing (well, nothing but a HORRID experience. This radiologist/tech combo refused to give anesthetic). I was under the care of what I would consider very subpar physicians. The stress level was skyrocketing as I finished my fieldwork for ABA, prepped for the exam, finished planning a wedding, and did the “rest of life’s necessities.”

Cancer was ruled out. The thyroid was ruled out as being an issue right now although some nodules showed up. One of the imaging reports mentioned possible schwannoma so I googled it. I began to hope and pray that it would not be the diagnosis. I kept seeing vagal schwannoma pop up. The incidence is small. It is a very rare tumor of head/neck tumors. I also kept seeing “brain tumor” as I googled this specific tumor. Technically, it was considered a brain tumor due to its origin and being a cranial nerve. I kept seeing support groups pop up. Is this where I was heading? It couldn’t be. It hits too close to home. I am the one who has the profession to help others who have effects from this diagnosis. Surely it was a tumor in the parotid gland or something that could just come out. Inconvenience and out!

After several visits and physician conversations, it was strongly assumed that I had a schwannoma, a nerve sheath tumor. It was a very real possibility of being the vagus nerve. It was nestled up against my carotid artery and jugular vein. I lost it, emotionally. I knew what that meant. Damage to that nerve can be quite intense. It’s permanent. Although I knew as an SLP what this meant, I asked the surgeon at the time “So if you cut my vagus nerve to remove the tumor, what does that mean?” To which he replied, “You are a speech pathologist, you tell me.” I was horrified. I had to say aloud that I may likely have vocal fold paralysis. My job is very important to me and is a mission. I was created to do this job. Flashes of faces that count on me daily to do my job well kept scrolling through my mind. I just walked out of there, dazed, and cried for the longest time in my car. Why does this happen to me? Why can’t it be an ovary? Do a hysterectomy, remove it, I don’t give a rip but why this area? MY area of work? How does something so rare happen to me? It seems perfect for a pedophile.

After I collected myself, I was furious. I don’t need bedside manner but that was abusive to me. I was offended. How dare you, you jack ass?! I went to see his partner who just wasn’t able to adequately answer my questions. A voice inside kicked in—RUN! They had insisted, ONE MONTH before a wedding, to take it out. It HAD to come out. I’m not a vain person but I didn’t want to have a fresh scar across my neck on my wedding day. [By the way, he had a great solution “Photoshop does wonders for pictures] Screw you, man!

I thought I had reached the bottom. I was at a loss. I couldn’t get into anyone better due to having an HMO. I couldn’t change it. Luckily, my support/prayer team through all this sent weekly well wishes and scriptures. I had/have Luba constantly ensuring that it is going to be fine.

I was fighting to see a higher level “tertiary level” ENT at UCI. I just could not be treated by a primary level ENT. This tumor is so rare. When I polled ENTs (that luckily fell in my path along the way, I knew none before this!), they all said that they would not touch me and that they would refer me to a specialist who worked in this carotid area every day and one that would work as a team approach. Ah, the words of ETHICAL physicians!

Seriously, God sent an angel in the form of an ENT. The connection was crazy in how our paths met. He’s #1 in Long Beach. He met with me and literally soothed my soul. He said these things are slow growing. I could even watch and wait for years. He released me to enjoy the wedding and deal with it after. My soul came alive and parts of me that I thought had lost the battle awoke.

I had just enough in me every day to rally to fight it. The detail-oriented OCD person in me rose for the fight. I filed a formal complaint with the department of managed healthcare as I had exhausted all my rights within my insurance company. I had little hopes as I faxed in my case to a government agency in Sacramento. I was sure they were busy and backed up with other things. Ten minutes later, someone called me to say that she was going to fight with me. She saw my need and felt my desperation. She knew I needed a specialist. She was communicative. She was supportive. She gave me tips. She felt like a partner. I was energized by hope. I gave it 200%. When I came home from the wedding, I found that we (took a village) won! The state had a legal team on it and had an independent medical review. I needed a higher level ENT with a certain kind of expertise and they overturned my insurance company. The insurance company now had to pay for UCI. It’s also largely because of the other ENT’s support and input that my win was a success.

Where am I now? Happily seeing a surgeon at UCI. I’m deciding between “watch and wait” (as these are benign and slow growing) and surgery (inevitable at some point). Many wait due to possible/likely permanent side effects from surgery. I feel like I need to close this chapter in my life and face the future. I have a huge army on my side on earth and in the heavens and I know I’ll be ok. Of course I hope I’m OK in the way that I hope to be OK but either way, God’s gotten me this far with everything lined up perfectly and supernaturally. He won’t stop before/during surgery. I’ve had other “Only God” happenings over the past week but I’ll save those for now. It has been further confirmation that we’ve got this and literally supernatural answers to questions upon which I’ve been dwelling.

Looking back: the timing of Luba coming? It seemed terrible. I felt so badly for him. I felt like a failure. He arrives and then the bottom fell out. I see now though that I would not have made it. He has been to all of my appointments and having another person there even when my struggle was internal and unvoiced made the difference. We definitely hit the ground running. Because of this and other visa issues, we have dealt with issues that I’m sure others don’t face until years of marriage.

Every day is a crap shoot. Emotions can be anywhere at any given moment and can change in a second’s notice depending on what triggers it as I think of a surgery in that critical area and the aftermath financially, physically, etc. Thank you for those that know and have been patient.

For others, some of you have had no idea that this was going on. I’ve made it to work, I’ve taken my ABA board exam, I got married, I celebrated on a honeymoon, and I’ve fulfilled my duties in ministry. All the while, there was an imaginary thought bubble over me that changed from moment to moment but often said “See me. I’m here and trying my best to stay engaged, but I’m worried. I’m mad. I’m scared. I’m hopeful. I’m wearing my brave face.” It reminds me to imagine a thought bubble over everyone. We walk around with a mask, and sometimes in a catatonic state juggling a myriad of emotions. Many of us are in survival mode but never let anyone know. It reminded me of this video that went viral a while back. Watch it here (for real, this is your Sunday sermon...watch with a new perspective). Let’s see each other. We may not know the situation but let’s treat each other with kindness. No one knows what another is dealing with under the surface. Sometimes our heads are barely above water. We can't rely on another's "good" answer to our "How are you?" Assume others need care. Show support. Share emotion. Let people in. In the end, it's people that matter. It's your community that make the difference. 

I’m going to be okay. You are going to be okay.

Thank you for reading and being on my team & thankful for "my people,"

Danielle

Enjoy my best Halloween picture! There's my "thing" there that show you why the MRI tech was so shocked. It has been affectionately named "testicle" by Luba or "Bumpbessie 2.0" by Mom. Who remembers Bumpbessie 1.0 in middle school???