My fear for young Black boys

As many of you know, I have plans to adopt at some point. My first feeling is that it will be an African American boy, and from foster care. The reasons are a whole ‘nother blog post. Once that became clear to me, other realities did also. It’s in the forefront as we face our racial struggle in America with young black males and the relationship to law enforcement and the alarmingly high percentage of young black males in prison.

This post is not a thesis or academic piece so I’m not going to reference everywhere or make this formal. This post is simply to express some very real concerns I have regarding young black boys today and particularly the impact of autism and social language disorders. Firstly, I’m fearful for our boys. Before you click away because you’ve heard this on the news and disagree, hear me out. I work in the trenches. I’m not influenced by media – I think it’s biased and works to create a direr and more skewed side in cases. I also know there are cases they do not share that would be educational in topics. I grew up voting Republican. I grew up with many prejudices against young black men. See, hear me out. I have something to say. I’m coming from the little that I know – but my personal experience and what I see. As Dr. Leah Gunning Francis so beautifully and simply stated, “our eyes cannot unsee what they have seen.”

I do both speech and language (SLP) and behavior therapies (BCBA). I work with all races and ages who have language, social and behavioral impairments secondary to syndromes, autism, delay with no etiology, you name it. I’ve worked privately, in non-profit and in school districts. Daily, I address behaviors which are aggressive in nature, much of which is due to a lack of communication or deficits in social language processing. Who do I worry about most right now? Young boys with autism and other pragmatic (social language) disorders. Particularly, I worry about OUR young black boys.

As I looked into the creamy brown eyes of one of my clients, I feared for him. This delicious, full-of-life, sweet, hug-you-til-you-drop boy with brown skin who has a significant impairment will someday be out in the world. When he begins to drive and gets pulled over for something, will he understand what the officer asks of him? Will the language be simple enough? Will the officer repeat his question louder or will he rephrase assuming a lack of comprehension? If my client is faced with a gun, will he run like he does when he’s afraid or doesn’t understand how to navigate a situation? Will the officer shoot, assuming evading the situation due to guilt?  

Will my client be “out-talked” or misled to admission of guilt? When many of my clients can’t understand the language or the higher level of processing it requires, they default to agreeing with me. They take my perspective and use my words. It’s easier. They just don’t always have the resources to allocate to navigate the question, especially when in distress, or they yell “no” over and over and over again just to get the questions to stop. They can no longer listen – they need it to simply stop. Language can be overwhelming. When the language doesn’t stop When we don’t stop talking/interrogating/questioning, they can lash out. For some, a physical reaction is the only way that has been successful for them in conveying thoughts and feelings. We haven’t respected their words. Further impairments result in their brains not sending out that signal that we often get that says “not such a good idea right now!” in response to whatever action we are thinking about.  I wonder in times like this: Can we just take a break and come back later?

With autism, many individuals have difficulty processing language. If an officer asks something as simple as “Can I see your license and registration?” will that individual truthfully and wholeheartedly say no? NOT because they wouldn’t grant permission but because they think literally. No, the officer cannot “see” the license because it is housed in his wallet or glovebox or somewhere else, out of sight. This individual would take it out if he had been told, “give me your driver’s license.” Or what happens if he processes this and reaches over to the glovebox to take it out?? Does he lack theory of mind which tells him that the officer’s brain is going to give him the perspective of “reaching for a gun?”

With a growing number of individuals diagnosed with autism, we have to be prepared for this. I know several police departments have welcomed specialized training in autism – recognizing it, responding to it, and keeping those individuals safe. Thank you to those departments and officers who reach out and respond to such trainings. It’s a learning process for all of us.

We know the percentage of language disorders among prison populations is much higher than the general population. We know many don’t have the eloquent language to finesse their ways through interviews, the “vague” language to use in order to avoid being misled. What if we taught them their Miranda rights in plain simple English? I promise you that many have no idea what they are being read. It’s spoken too fast for comprehension and for processing for immediate and future repercussions. Is it also provided in writing for those with auditory verbal processing disorders? I believe in consequences (the right one) and getting “the bad guy” but I also believe in suspects understanding so that we CAN get the “right guy.”

I also feel strongly about officers. I’ve grown up respecting law enforcement and will continue to do so. I know of so many personal and safety sacrifices they make in order to keep us safe and to do what is right. I also know that MOST are making up for lost time and reputation due to a minority of “bad cops.” Those poor representatives of what law enforcement is and should be are strewn all over our TV screens leading us to believe that they speak for the majority. We know it, officers. A few bad ones cannot overshadow the majority of good.

We have a lot of intelligent “bad guys” in prison, I get that too. I’m only particularly worried about those with language disorders and pervasive delays such as autism. This can also apply to our immigrants with limited English skills and lack of cultural fluency in this country. It’s personal to me in so many ways.

Look at this sweet face who is now a (semi) young Black male

freshly immersed in American culture 

Luba made it more personal & more tangible to me

I guess I keep thinking of how can we all work together? Parents, therapists, mental health professionals, law enforcement, teachers, and the list goes on…..how can we make the world safe for officers and youth? Perhaps as Dr. Leah Gunning Francis also pointed out, we should bring in the parents. No panel on TV has a mom as part of the discussion. I can’t believe I never noticed this as I’ve watched mostly MEN who are political and highly educated argue over the cases at hand. Moms of black boys, come to the table. We need you.

This is just the tip of the iceberg but I hope the next time you watch a police shooting clip, you don’t immediately think “he shouldn’t have resisted arrest” or say “well, he ran.” I know some of you think them, I have in the past. I had “until me eyes could not unsee what they have seen.” If we can all think and process more holistically, can we find more ways to refine the process? Can we not respond in an exasperated manner because these “thugs” we see on TV were once young black boys who smile, dance, hug you til you drop, giggle, and hope? I would venture to say that they never set out to disappoint, to be imprisoned, to be failed in our public schools and special education system.

The first step, I believe, is to listen. I didn't believe a lot of this actually happened (HOW? I still ask) until I saw it and until Luba came. I'm hopeful. Together, we can. 

Love,

Danielle

Hey, hey! Time for an update!

Well, hello there! It has been a while, hasn’t it?

We’ve both been busy settling in to “the Lou” and finding our rhythms…..I thought an update was long overdue!

I’ve so missed this blog. I do not want to get back to the “single, party of 1” lonelier days but man did I have some serious time to think, think, think, and write, write, write. It was good for the soul. That’s one soul-care activity I desperately need to find time for again. We absolutely have to find time to lead ourselves and care for what we need to thrive. Right? Right!

As for me, I’ve been getting busier at Easter Seals Midwest. It has been a nice slow start building a case load and learning the ropes. I’ve done several evaluations and starting to provide some therapy. I’ve made several mistakes. Why do we initially go to “Maybe I’m not good enough” or “people are going to think poorly of me” when we make a simple expected mistake. I’m learning through this learning curve to be gentle and to extend grace inward. Starting over is hard. I’m so used to being “a big fish in a little pond” in terms of knowing things about work and having all the answers to feeling like a “drowning minnow” sometimes. I’m reminding myself to really feel this process and to appreciate the experience. Don’t get me wrong- I love the placement. I left a great group of co-workers back in California, but I was also welcomed in by a great group of co-workers. I’m appreciative every day of the professionalism, friendliness and knowledge of my fellow BCBAs. The rest of the staff is great too and truly care for the success of the clients. Another new part of this process for me is evaluating older clients (hence the steep learning curve). I’m assessing two clients now – both of them are in their late 20s.

As for Luba, he started a new job on July 1!! WOOT! It couldn’t be more perfect for him. He is working at the International Institute. It’s an agency that assists immigrants and refugees. It especially warms my heart as I had the chance to experience what this country offers refugees back in 2011 when I served CreateCommon Good in Boise, Idaho. So far, so good – he loves it. I’m so happy that he has been able to find a non-profit and one where he can connect uniquely with the ones served by it. We had learned about this organization by two different people in the same weekend (they didn’t know each other) so he hopped on to the website and found that they were hiring. 

As for us, we have been able to celebrate 3 birthdays so far! Finally, in one city! My birthday was in June and my sister and Luba celebrated July birthdays within a couple days of one another.  Two things: 1) you can tell who the photographer in the family is, and 2) I love cakes for birthdays. I did pick out a cannoli (with an appropriate candle) for myself but I love cakes for others. I believe everyone should have a birthday cake (or pie or whatever) for a birthday, with cheesy writing!

We have had two visitors since we moved. Jody visited us in May and the Diaz (April) family stopped in for a night during their move to Indiana. 

In June, I went back to LA for the GodChicks Conference. I go every year and its the single biggest event that feeds my soul. I take home so many nuggets of wisdom that I go back to throughout the year and years beyond. This year, I saw Joyce Meyer, Christine Caine, Holly Wagner, and Rich & DawnChere Wilkerson. I've already bought my ticket for 2016 - along with fave girlfriends. It was so great to reunite with friends- ones that went to the conference with me are my prayer posse. After the conference that Saturday night, I was able to meet up with my closest girlfriends for dinner.

 Joyce Meyer - going strong in her 70s!

 Can you believe I had written this in my journal one year earlier, at the same conference - this is the message I kept hearing all weekend whispered to me....it was true! 

 DawnChere Wilkerson

 Rich Wilkerson - I forgive you for befriending Kanye West

one of the best messages I have ever heard

 lunch with some of the strongest & bravest women I know

 Christine Caine

The conference was at the Dolby....the DOLBY! The Academy Awards are held at the Dolby Theater in the heart of Hollywood. No gold idols on this stage this weekend!

Socially, we are making some connections. Luba has met some South Africans and we’ve had a couple of dinners/lunches and plan to see them again. It’s nice to connect with South Africans for him and I get to live vicariously. Hearing them speak in Afrikaans takes me back to days in South Africa. They are the friendliest of people. 

A braai, in America!

We’ve been to 2 Cardinals games already. It’s so fun here! The ins & outs are so easy and it’s like a whole community there around the ballpark. There is not “right in for the game and right out after” like I’m used to. I’m learning about this whole “Cardinal Nation” business. And its serious business too. We went to games coincidentally that were against California teams – the Dodgers and the Padres.

I started a book club on meetup.com so that I could meet some gals that like to read and come from a variety of backgrounds. I had great luck in CA with meeting friends that way. I’ve met some really cool women so far. One of them had also gone through the same visa process as me so we hit it off immediately. What a strong connection we make through hardship, right? You cling to those who “get it.”

I'm looking for a new ENT so that I can get a check up this year. I had my thyroid checked as a routine ultrasound since I have 3 nodules living there...no big deal for now, but we will watch them. (yes, this is separate from my "neck testicle" I had removed) I met with the doctor for the results. None were found. What? Where in the hell are they? Oh well, still nothing to worry about. But, sitting across from this computer/desk is an all too familiar scene. 

It took me back to 2013, the beginning of my journey with the tumor I had removed. Each glance reminds me of life, of love, of tenacity, of faith, of healing. The list goes on. And to hear another physician say "You had that removed with NO damage whatsoever? No effects? It makes me giggle inside. It makes a warmth wash over me and I look above. I just bet God winked. No, I bet he got up off that throne and WOOPED or fist pumped (or some move we haven't learned yet but will be popular in a few years because he knows everything!)! A spiritual bond grew during that season that is indescribable. I need those moments because I forget sometimes that it even happened - what a recovery! I don't take one single moment for granted though as I'm able to continue on working and use my voice. 

I’m also unveiling a new project soon – a business. I’ll save the details for another post but it’s something I’ve always dreamed of but never thought I was ready for. So after some thinking, I figured WHY NOT! For now, I can dip my toes in the water to see how it goes and it gives me the chance to take care of myself (providing speech, extra cash) and see where this goes. I’ll never know if I don’t try, right? If I don’t believe in me, then no one will.  To be continued but here's a look at a business owner!

That’s about it for us for now. Keep in touch - we miss you!

Love,

Danielle (& Luba)

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.

That time I got married in Vegas....

Remember that time I got married in Vegas? Oh, oops! That cat didn’t make it out of the bag for many people because I wanted to save up all the zeal for the “real” wedding in April.

Well anyway, I did.

Luba arrived in October (2013). He came here on what is called a fiancé visa. One of the stipulations was that we would be married within 90 days of his arrival. No stress right? No biggie? I’ve loved being in a 3-some all this time—me, Luba, and US government. We knew we wanted to share the moment publicly in a warm personal ceremony surrounded by our closest people. We knew we’d have to have a legal ceremony within the timeline in order to proceed with the process, and it would occur before we had the chance to plan the “real” wedding. The idea of going to the courthouse didn’t appeal to me. I like “off the beaten path.” I like quirky. I like fun. So, the idea hit to do something I SWORE I would never do (remember me and my nevers? Yeah, I always end up doing them) --- VEGAS BABY! DRIVE THRU! I mean, pop-out-through-the-sunroof-limo-ride-straight-up-to-the-window Vegas. I asked Luba and he preferred that idea over the courthouse. To him, having people with us being witness and having fun was the deciding factor.

So we did it! My friend April and I booked it. We booked it right there at the District in Tustin, sitting right outside Pinkberry. We laughed until we nearly cried booking this excursion. Yes, there is a dropdown menu where you can choose Elvis to be present or not.

On the morning of November 9, we headed out to Vegas! I look back on it now and chuckle. We were so new to one another and he was barely recovered from jetlag. We knew we were serious and had made this commitment to each other long before. There was no question that we would marry within a short time frame. It was just so weird for it to be “here” already. We had waited so long. We had spent hours talking about it.

We headed out and of course realized “too far into the trip” that Luba forgot his passport at home. We called to make sure that we could use an alternate ID since he had his driver license from South Africa. We first headed out to get our marriage license once we reached Vegas. It was quite the fiasco with no passport because his driver license listed his first 2 initials and last name. On November 9, I was set to marry “Li Mntanga.” Birds weren’t chirping at this moment as I realized this would not fare well with our paperwork. This process requires one to be meticulous and each detail must be perfect and triple checked and matched to other documents. It requires one to be OCD to the –nth degree. I recited like a crazy person: Oh God help me. Just move on. Just enjoy and do damage control after the fact. “Li” is probably wonderful too.

We had friends meeting us in Vegas at the hotel. We had a fabulous suite waiting for us at the Hard Rock Hotel (thanks again, AB!). We lunched, walked, and wasted time as we waited for the room to be ready. What was taking it so long?!?!?  I swear we spent half a day hanging at the reception area.

We didn’t have time to check in at this point before we’d have to be ready to leave so we got ready at a friend’s room. Can you feel my stress level rising?! I’m having heart palpitations as I recall all this. We met the gang downstairs at the lobby where the limo was waiting. It was on!

We all piled in and headed to the little white chapel. We pulled in behind another limo finishing up. I could see the “menu” on my left. I only had nervous giggles. I applied more MAC red lipgloss. What else could a girl do?

Finally, it was our turn. I was given my bouquet. I was surprised at how lovely the flowers were. We had a pastor come to the window and greet us—this meant a lot to me, not just any officiant. The photographer climbed in the car with us to capture the moments before and during the ceremony. It was short. She gave a little blurb, which I recall being nice but couldn’t tell you one thing she said. We said the standard vows. We didn’t exchange rings. I wanted to save this for our ceremony with friends and family.

Afterward, we got out and took some pictures at the chapel before heading back to the hotel for our drop-off. We were dropped off at the Palazzo for a dinner reservation at Table 10. This Emeril Lagasse restaurant is Cajun themed so it was a perfect place to celebrate as our “real” wedding would be in New Orleans. After dinner, we walked around to show Luba Vegas and then headed back to our suite, where the action ensued. No, not that action….BUT there was some mean dancing skills being showcased there that night!

BUT, walking in to the room was a fun surprise! While the room had been delayed, Candice & Kerrie Ann were able to sneak in first for some decorating. Turns out, I barely missed them at the Hard Rock when we were walking around. Apparently, April had redirected us walking when she spotted them around the lobby. We walked in to balloons, chilled champagne (ordered to be waiting from my friend Jody), bundtinis (my fave dessert), and gifts. It was a perfect night. We revived classic booty music hip hop songs. I laughed until I cried. We’ll all remember my new husband trying owning “the worm” on the floor.

The rest is history – and well, because – what happens in Vegas stays in Vegas.

Here are some pictures from the night. Oh and remember that lip gloss I liberally applied in nervousness? My all-time favorite pictures are the ones where Luba’s actually wearing it after the kiss that sealed the deal. And, look how it's all over my lips! Enjoy!

Love,

Danielle, the Mrs.

P.S. When we got back, we were able to show the passport and get the name corrected. Phew! But, I did enjoy that rendezvous with Li.