Sometimes You Know Too Much

I know that not everyone will understand why I share so much of our lives, often in personal detail. There are many reasons, first...I process by writing. It is therapeutic for me to put proverbial pen to paper and silence the noise in my head by getting it out into a tangible format. Second, I have always believed that when we hide the messy, sad, even embarrasing parts of our lives, we are doing a disservice to others. We did not get to all the good in our lives by walking easy roads. The most beautiful and interesting people are the ones who have endured pain. Those who have risen from the depths and constructed their broken pieces into a beautiful mosaic...full of color, a few sharp edges...but ultimately a masterpiece we call life. These are the reasons I share. 

In this case I also share to document for Jon the days he lost. He has said multiple times that he is most disturbed by the fact that he just lost 4 days of his life. He has no recollection of the sequence of events that took place before he opened his eyes in the ICU with a breathing tube down his throat....so truly, this is for him. 

 In the moment you don't always realize that the decision you are making is a life altering one. To make or not make the choice would set you down two very distinct, and vastly different, paths. My decision to call 911, for the first time in my adult life, was such a moment. Now, this may seem obvious to many...but to a seasoned ICU nurse, this decision was difficult...let me explain. 

 Jon had tested positive for COVID about a week prior to that fateful call. I had just returned from my usual week of work in Las Vegas. He didn't feel terribe, but my Monday he was pretty fatigued and his ear was hurting. By Wednesday that earache had escalated and now included a brutal headache. The ear was also leaking fluid so we took him to the hospital, got some fluid since he was also febrible, and had his ear looked at. They said it was ruptured and he was given drops to treat it. Nothing seemed too amiss otherwise. By Friday morning he seemed to be doing well and even went on some holiday errands without me to grab some more gifts. He came home just as I was about to head out to a 1530 appointement. I told him I'd pick up Asher and that he should meet me nearby with Jackson so the boys could see Santa. He agreed. 

 I arrived to the Santa location at 1730 and called him to see when he was coming with Jackson. He said he had a 10/10 headache and wasn't coming. I brushed it off then as he tends towards the dramatic at times (can we say man flu??) and called my mom to bring Jackson instead. Both boys had a great time and I we returned home about an hour later. I found him in bed, lights off, with his hands over his face. He said he had a terrible migraine. I asked what he had taken and he said he wasn't sure. So I gathered all the meds to make sure I knew what he was getting. We tried many tricks to get this "migraine" to go away. He never complained of stiffness in his neck, only of typical migraine signs. He was lucid, despite being in pain, and nothing really triggered me to feel like he needed to be seen at the hospital. He ended up settling a bit and we agreed I should sleep in the office so I didn't disturb him too much. 

 I woke up early the next morning around 0400 as I was restless and a little worried about him. I went in to see him and he woke up, said his head still hurt, and I helped him to the bathroom. He was still lucid and making sense, and was fairly similar to the night before. I gave him some more meds, hoping it would finally solve the problem. I told him if this didn't clear up soon we'd need to go in, he agreed. I continued to check on him hourly, just speaking to him a little to ensure he'd wake up and see if he needed anything. He was clear and answering me appropriately...until he suddenly wasn't. 

 At 1050 I walked into our room and told him that it was nearly 1100 and he should probably get up and dressed so we could go into the hospital. He didn't respond. I shook him a bit and he stirred but still didn't answer. I turned on the lights and shook him harder. He opened his eyes and looked about me but didn't answer. I then rubbed his sternum and asked him what day it was. After a few attempts he finally answered me..."Tuesday"...it was Saturday. I then called my best friend's husband, Brian, as he's an ED physician. He didn't answer, so I called his wife, a former ED nurse. I kept her on the phone with me as I continued to attempt to assess him. I noticed he was also drenched in sweat, unlike earlier in the day. I called my son into the room and we tried to sit him up. He was able to sit up briefly but then laid back down. I told Shanne to run to our neighbors house to see if they were home as the husband is also a CrossFit guy and I knew he'd be able to help me lift him. I called Jon's brother, Jamie, and gave him a brief rundown of what was happening and to meet us at the hospital, that I'd update him as I knew more. Shanne quickly said they didn't answer the door so I called our other neighbor. The phone rang 3 times with no answer and in that moment I decided to call 911. While I had been on the phone with his brother I had asked him his name...he mumbled a response that was absolutely not consistent with anything sounding remotely like Jon. I knew then that something was terribly terribly wrong. 

As I walked through the triage with the dispatcher I remained calm. I knew his symptoms were not consistent with a stoke as they were focal and not unilateral. Besides his clear fever his oxygen saturation and heart rate were normal. Nothing else was clearly wrong. The medics arrived and began their assessment. His temperature was over 103 degrees at this point. I told them that he was A & O x 0. In medical terms this simply means he did not know who he is, where he is, or when it is. They continued to assess him and told me that they were getting the ambulance to come out. Since we live in a more rural area, the fire engine team is closer and has paramedics staffed. Now they were activating the medical side. 

When the ambulance team arrived the paramedic who had been working with Jon gave a brief report to his colleague. He stated, "I don't know if he can't answer or he just doesn't want to because he feels crappy." I was shocked, I KNOW my husband. If he knew I'd called 911 he would have perked up immediately and done anything to not be transported via ambulance. He was completely unaware of what was happening around him at this point and was no longer responding at all. I spoke up and told them that he COULDN'T answer them. They then tried to get him to stand up to get on the gurney, it was a complete failure. He wouldn't even sit up anymore. It took 6 men to get him onto the gurney. Six. There is no way I would have been able to do that alone. 

 During this I had called my village and my good friend, Britt, came to get my boys. They had been sheltered in their sister's room in the back of the house and were completely unaware of the drama unfolding. When Britt arrived we closed our bedroom door and quickly took them down the hall, they didn't see anything and had no idea why there was an ambulance and fire truck in our driveway...but man did they think that was cool! I was still holding it together at this point, likely in shock, but I said bye to them and handed them off to Britt. My mom had also been sick so I knew she wouldn't be able to care for them well and I also didn't want them to notice daddy and mommy were suddenly gone. I'm so thankful that I have a village...this was only the beginning of how they all showed up... 

 I wasn't allowed to ride in the ambulance, so Shanne and I followed in my car. My brother-in-law was already at the hospital by the time we arrived. We checked into the security area and were told to wait while they settled him in a room. It seemed like an eternity before they came and got me. Only one person at a time was allowed in to see him...so each time I went in, I was alone. 

When I first saw him I noticed his lack of color. As a nurse, especially an ICU nurse, we use all 5 of our senses to assess patients. Now that I was in a hospital setting, my brain flipped instantly into nurse mode. Taking in his color, skin temperature, facial expressions, vital signs, body movements, sounds, breathing rate, depth, and rhythm...all of it...simultaneously. I didn't like what my assessment was telling me. He was very agitated and moving constantly. They were trying to get blood from him and he was swinging his arm wildly. I jumped in to help and held him down as the tech drew blood. He was able to wrestle away from me and the needle flew across the room. Thankfully no one was hurt and they were able to get what they needed. The doctor came in to speak to me quickly and told me what they were doing. Giving fluids, attempting to get his temperature down (which was now 104 degrees rectally), getting labs, and we were going to go to get a CT of his head. They asked if I could go to help keep him calm. I agreed.

I sat there with him, wrestling with him constantly so he'd keep his monitors on, not hurt anyone around him, and not hurt himself. My brain was having a hard time trying to process what was happening as I've done this hundreds of times with strangers...but this wasn't a stranger...this was my husband. My husband who hit me in his failing and had absolutely no clue who I was. It was so surreal...and it was only the beginning. 

 We went to CT without much incident, I insisted they strap him onto the table to keep him safe. We quickly got the results and there was nothing there...only some sinusitis (which he'd been dealing with weeks prior). This was reassuring and also maddening, as it meant we still had no answers. His labs had come back without much information either...nothing was too out of the ordinary there either. The doctor and I then spoke and it was decided they'd do a lumbar puncture. He suggested we sedate him as he'd likely fight them during the procedure. I agreed. 

I signed the consents and Jamie came to see him before we had to step out for them to complete the test. It felt like another eternity before they were done and I was let back in. When I saw him this time by stomach dropped. He looked terrible. Every siren was going off in my brain. I quickly looked at his nurse and told her, "he needs to be intubated." She said, "I know." I knew he needed the support of the ventilator soon. He was breathing so fast, working so hard to keep up with the demands of his body. His temp was now well over 105 degrees as well and they were trying to cool him down quickly...which is uncomfortable at best. They placed ice cold pads all over his core and upper legs and cooled them down to 5 degrees Celsius. Jon HATES being cold on a good day and I knew this was added torture to him. 

It wasn't long before I was told the culprit...bacterial meningitis. In that moment I knew this was much much more serious then we all originally thought. The ICU doctor was already involved and they knew he'd ultimately end up there once a bed became available. They moved him to the critical area of the ED and placed him on the ventilator and placed a large IV into his neck so they could give him all the medications he needed. 

When I came back in I felt beyond helpless. His eyes looked dry and were weeping so I asked for a washcloth so I could clean them. The nurse gave me one and left the room. I wet it with warm water and began to clean his eyes. First the right eye, it was red and irritated, but otherwise normal. Then the left eye. I lifted the lid and immediately my heart sank...his pupil was covering his entire eye. In medical speak, his pupil had blown. This is a very very bad sign. I frantically went from right eye to left eye to right eye and back. Checking again and again...saying "no no no no no no" over and over again out loud. Praying I was wrong. I wasn't. I ran into the hallway and started yelling for the team. They all came in and assessed his eye and agreed. They gave emergency medications to bring down the swelling and attempt to save his brain. The neurologist came and assessed him and then spoke to me. He discussed the plan and let me know they were also going to get an MRI once he was more sedated. He didn't have other deficits in his limbs, just the pupil at that point, so we didn't need another CT. I asked the neuro doc to be honest with me, how bad was this. He paused, took a breath, and said, "this is very very bad." 

 As he walked out of the room I started shaking violently, I took my phone out of my pocket and called my mom. I think in these moments...these incomprehensible moments...we all just want our moms. I'm not sure she could understand me. I sobbed the sobs of a women who knew the love of her life was dying. A women who didn't know how to face the next moment in front of her. I sobbed the sobs that I've heard many times in my career...and they never cease to rock me to my core. I heard those sobs and when I realized they were my own...I just sank deeper into them. 

 I walked out of the room...outside...and collapsed as soon as I saw Jamie. My world was falling apart, and now I had to tell him too. Between sobs I told him what the neurologist had said. Additionally, they were consulting neurosurgery to see if he needed to go to the OR and have a drain placed to monitor the pressure as well as drain excess fluid. 

During all of this one of my best friends, Alli, and my daughter had arrived. They were surrounding me with love, in the midst of their own pain. Jamie was a rock...literally and figuratively holding me up as his world was also crumbling. He'd go into the room when I needed a break. To see your previously strong husband in that state was rocking me to my core. I was numb and dying inside at the same time. Nothing and everything made sense. I felt only deep pain and a love so strong that I knew...even if he left me on this earthly side...we'd never actually be separated. 

 And I prayed. Every moment I had. Into Jon's ear. Alone in my head. With others in person and on the phone. I prayed. For Jon. For our family. For the medical team. For peace. For strength. Sometimes it was more begging than praying. But all along I spoke to God. I knew only He had control over how this would turn out...whether it was they way I wanted it to, or not...He had it all in His hands. This was a small comfort to me...the only comfort I could find honestly. 

 Eventually Jon was moved to the medical intensive care unit. I was a little more at peace once he was there. Not that I don't love the ED team, but in MICU I was home. It was familiar. He was well sedated now, stable, and there was nothing to do but wait. It was nearing 0300 on Christmas Eve and I knew I needed to go home and attempt to rest. My village had tried to get me to eat...they mostly failed...and I needed to close my eyes. I drove home with Addy in silence. There were no words for the pain and uncertainty we felt. I tried to sleep in our bed, but there was a Jon-sized hole in the bed that felt like a void bigger than I could bear. I ended up on the couch, cuddling with our dogs for comfort. I only managed a little over an hour of rest. I got back up and attempted to do things I knew I should. I showered, I drank a smoothie, and I waited for my boys to come home. When they were dropped off I just told them that daddy was sick and in the hospital...and that he wouldn't be home for Christmas. They didn't ask many questions and were quickly off to play...bless the innocence of youth. I had called his nurse overnight and gotten an update. He was doing well, had gone for the MRI, and we had no real other information. 

 Jamie and I arrived back at the hospital mere hours after we'd left. We were now both allowed into the room...this was such a relief as I could now have support while I was wrestling internally between my nurse and wife brain constantly. At one point during the night I even had to acknowledge that Jon met the triggers for the hospital to call him into Lifesharing...as he could potentially become an organ donor if he continued down this horrid path. Thankfully, Darryl, told me that I could only be 2 things here, a wife, a nurse, or a coordinator...but I couldn't be 3. So I picked wife and nurse alone (that was hard enough). 

 To have that knowledge...to know the implications of what we were facing...to be able to read the signs myself and hear between the lines of what we were being told, and to translate that for our family. It was brutal. It was exhausting. It was surreal. I simply knew too much. Sometimes you just know too much...

That evening, around 1800...as Jamie and I stood in his room holding his hand...he stirred. I said his name loudly and asked him if he heard me. He shook his head yes. I then asked if he knew it was me. He shook his head yes. HE SHOOK HIS HEAD YES. ON PURPOSE. He heard me. He knew me. We weren't out of the woods by any stretch...but was he was in there, Jon was still Jon. He was still my husband. It felt like a weight came off my chest in that moment. 

The rest is not as dramatic. The breathing tube came out the next morning. We now know that the bacteria that caused his meningitis was likely from his sinus infection that went to his ear. They believe that the COVID infection is ultimately what cause it to go into his brain. He'll be getting twice daily antibiotics at home for the next week...luckily he married a nurse.

Jon remembers most things from that point on. He remembers writing notes. He knows CrossFit and his wife saved his life. He knows he's forgetful and is getting better about letting me help him. He's exhausted. Like a to-the-core kind of tired I've never seen from him. But he's home. He's alive. He's going to be ok. He may have lifelong deficits, or he may not. We don't know. But I don't care. He's here.

If you got this far, thank you. Thank you for letting me process my own way. I know this experience will have it's own ramifications on me. I can feel them. It is a heaviness that sits on me...even in this happiness, there is still sadness and pain. I know that a person likely can't go through something like this and not take a while to process and recover. And that goes for both Jon and I. Even though he remembers nothing, he sees my pain and knows what I went through...he feels guilt...sorrow...and an overwhelming feeling of loss. We're working through it all...together. 1% better every day. That's all we're going for.

To every single person who has called, texted, messaged, visited, responded, donated, given us food, love, gift cards...we are absolutely overwhelmed by all the love and support. It has buoyed us, specifically me, in this sadness and will get us through as we move forward. Thank you is not enough, but it's all I'm capable of right now. I love you all. Thank you God for bringing him back to me. I know not everyone gets this chance, I've witnessed it time and time again. I promise I won't waste it.

Through The Looking Glass

It's taken me a long time to try to process what's happening around me enough to string coherent words together on a page.   As my state, my county, my hospitals, my people are in the midst of what can only be described as a disaster, I had the realization today that what I'm witnessing now is the closest to what I experienced in Afghanistan that I've ever seen stateside.  It's crept up on me, the stress...the fear...the realization that my people aren't drowning, they are already underwater and all I can do is stand on the shore and try to throw them a life raft.  

It's like the frog who was placed into a pan of water and as the water began to boil, the frog didn't sense the danger...until it was too late.  This euphemism may seem silly, but it perfectly illustrates a common aspect of human psychology...we tend to accept things if they come upon us slowly, steadily...until one day we are standing in boiling water with no way out.

America is the frog.  Except in this story the entirety of healthcare has been screaming out warnings for months...pleading for help, for safety, for compliance...and it fell on deaf ears, or maybe not deaf ears...they heard us, but they didn't care.  America as a whole simply wanted to bury their faces into their TikTok videos and ignore what was happening in every hospital in this country.  But the water kept getting hotter...and the frog didn't notice, because the temperature crept up degree by degree...until one day the bubbles started to roll.  At that point there wasn't anything left to be done...the die had been cast and the frog's fate was sealed.  

I am one of those healthcare workers who has been screaming for help since March.  Pleading with my family and friends to listen, fielding texts messages from well meaning people trying to decipher if this was truly a problem or not.  My answer was always the same...it's a problem, but the numbers aren't what matter to me, what matters to me is how the hospitals look.  How the ICUs look.  If they aren't bogged down, then we are ok.  We are no longer ok...not even close to ok.  The water is boiling over. 

I've tried to explain my perspective but people don't seem to get it.  As an organ procurement coordinator I travel to every ICU in my county.  I have a literal front row seat to the disaster as it has unfolded.  Today, as I entered one of our local hospitals I was almost stopped in my tracks by the calamity around me.  I was instantly reminded of the numerous mass casualties we ran in Kandahar.  There weren't bloodied soldiers everywhere, but there were patients stacked into converted rooms, PPE clad nurses, respiratory techs, and doctors running around trying to put out fire after fire, and there was an overall sense of hopelessness...of loss...of defeat.  As I received report from the bedside nurse taking care of the patient I was following we spoke a bit about what was happening.  I've known this nurse for over a decade...worked alongside her many, many years.  She told me that this was the worst thing she's ever experienced in her entire career...that she doesn't know how they are doing it.  What was left unspoken was the knowledge that none of them know how long they can continue until the entire system collapses upon itself, bringing everyone down with it.

I left that hospital and traveled to another one nearby...and was immediately met with the same situation.  These nurses, pushed to their brink, were trying their best to take care of three ICU patients at once (the CA state ratio for ICU patients is one nurse to two patients, almost every hospital in our county has been above this ratio for the last week).   The nurse I spoke to was gracious, and thankful for the help she was getting from another nurse...a nurse from a less impacted floor who had been floated down to help her care for her assignment.  Amidst it all she was simply thankful that her team was able to support each other.

These are not isolated incidents or stories.  This is playing out in eleven counties around us.  There simply isn't room.  Even the morgues are full.  I found out that there is a person at a local hospital who's job it is to rotate the bodies in and out of the freezer every two hours.  Imagine being that person.  Imagine that for a moment.  That's where we are at right now.  We watched New York go through this months ago and seemingly learned nothing as a society.  It was simply a story we watched on TV, blaming the media for over hyping the situation.  Well, I can assure you this isn't hype, it's fact.    

It's been exceptionally difficult to sit on the sidelines and watch this all play out...now it's excruciating.  That is not to say I don't believe in what I do with my whole heart...I completely love organ donation and have been so proud of the lives I've helped to save this last year while the world fell apart.  But now, as my best friends on earth struggle more than they've ever struggled before, I'm torn.  I sit here, looking through the proverbial glass, into a world I know better than the back of my hand, completely unable to help them.  I walk beside them every day...through their halls...around their corridors...watching everything they are experiencing, absorbing their stress and pain...and feeling useless.  To that end I've asked if I can go back...not permanently...and not to the detriment of my primary job of saving lives through organ donation, but I can't keep sitting here and not attempt to throw my skills into the mix.  I know that my impact will be very small, but if I can help one nurse to have a slightly better shift...help one patient suffer a little less...then I'll have made a difference.  My co worker aptly described this personality (her personality included) as the "people who run towards danger."  She's right.  We aren't the only ones in our organization who feel this way either.  I guess that's what makes us all truly great...our never ending desire to make a difference, to save lives, to alleviate suffering, to step alongside another human and share the burden, make the load even just a little bit lighter.  I am honored to work with such amazing, empathetic nurses.

The one small ray of hope in this entire drama has been the delivery of a vaccine.  I cried as I saw a picture of one of my best friends being vaccinated.  I didn't realize how much fear I had that she would get sick at some point...that she would infect her husband...that they wouldn't be ok.  I've teared up as every friend I have in medicine (and it's a lot) has posted their vaccine selfies.  I will cry actual tears when I receive mine and when my husband receives his.  And when the day finally comes that my mom is able to get hers, I'll finally have a huge weight lifted from my shoulders from the fear that she would get COVID and possibly die.

But despite the vaccine this is long from over...and again I plead with the entirety of America to please listen to us.  Listen to the people on the frontlines.  It is bad out there.  There is no more space and even fewer healthcare workers to help.  And I truly fear it's only going to get worse after the holidays...hard decisions will need to be made and more lives will be lost simply because of the lack of resources.  Disaster medicine is here.  The war front is now on our doorstep.  The front liners are now your last defense.

Stay home, wash your hands, stay healthy...and for the love of God wear a damn mask.

We Are Autism

I feel like I need to get this out...put it down on proverbial paper so that maybe I can reference it when the inevitable questions arise...and arise they do...often...always.  Most are well meaning...some are accusatory, and many are fraught with sympathy and even fear.

Our son, Jackson, was diagnosed with Autism Spectrum Disorder (ASD) on April 2, 2018 (on Autism Awareness Day) at just over 18 months old.  I was not surprised...in fact, I was relieved.  When Jackson was around 13-14 months of age I found myself googling the signs of autism in very young children...I’d pour through YouTube videos posted by parents...searching for my son in these children’s behaviors.  Jackson is my third child...my third toddler.  I knew something was off.  He was a beautiful, happy boy...but he would not communicate with us.  He’d babble, but it never seemed to carry any meaning.  He had no concrete words that he used with regularity.  Beyond that he wouldn’t point to things he wanted or drag us to objects he wished for us to get.  He’d just cry...and tantrum.  He had very repetitive, odd behaviors.  He was obsessed with closing doors, drawers, and latches (he was so obsessed he’d close all the baby locks for us if we forgot!).  He'd get upset if you got in the way of his sometimes obsessive routines.  He also seemed to lack the normal toddler empathy.  Most young toddlers, when faced with another person who is sad, will attempt to comfort that person...they may simply acknowledge the sadness, become sad themselves, or offer a toy as a means of attempting to make the person happier.  Jackson seemed entirely unaware of the emotions of those around him.  Once when I was very sad and crying he sat on my lap and laughed at me...I’m sure my tear stained face with mascara running down was funny to him.  He also seemed to only have two emotions, happy and upset...there was no in between.  

I knew something was different with my beautiful boy.  When I sat in the waiting room for his 18 month appointment I stared at the long list of marks I’d made in the NO column of his MCHAT (modified checklist for autism in toddlers) it started to click that my mom intuition wasn’t wrong.  As his pediatrician went over the form she suggested starting the process of doing speech and developmental assessments.  She didn’t sound concerned and even suggested we could wait...but I knew this was what he needed.  We pressed onward.

Jackson’s speech assessment occurred prior to his full developmental assessment as a scheduling fluke.  As Jon and I sat in the speech therapists office I watched her watch Jackson with her trained eye.  I tried to see him as she did and not simply as his mother.  I watched him throw every toy on the ground...become upset when we would put the toy back.  I saw him walk in circles around her office trying to open and close every door and drawer he could reach.  I noticed how he refused to engage with her as if she didn’t exist.  She asked us questions and towards the end shifted her focus and mentioned several times that she wouldn’t proceed until his developmental assessment was complete “in case he got a diagnosis.”  As we left the office I looked at Jon and asked him if he heard what she wasn’t saying...he hadn’t.  I knew with certainty in that moment that our little boy had autism...there wasn’t a shadow of a doubt in my mind at that moment.

The next few weeks were a flurry of phone consultations and paperwork.  The day of his official assessment I was mentally ready for the outcome.  We sat in the psychologists office as she went through the litany of standard tests with him.  It wasn’t long before she went back to her computer and stated simply that Jackson had ASD (autism spectrum disorder).  It felt as if a weight had been lifted off my shoulders...we had a diagnosis, my mom intuition had not been wrong, and now we could move forward and attack this.  I glanced at my husband and realized his world seemed to be crashing down.  He had not come to the same conclusion I had and instead was waiting to see what the experts said.  This was his first child and he didn’t have years of parenting experience to back up what he was seeing and what would be considered “normal” in a child Jackson’s age.  My heart broke for him as I then realized so many dreams we had had for our son may never come true.  In all honesty I really tried not to dwell in that dark place too long because I knew it wasn’t productive...but there are still many moments that those thoughts come unbidden.

From there Jackson went through many, many more assessments...from our local regional center, Applied Behavioral Analysis provider, and even our school district.  It was during this time that we realized how rare an actual medical diagnosis of ASD at his age was.  As I always do I dove into the research to see why.  Most of it seems to be insurance driven.  As of 2017 California is one of 46 states that mandate treatment for children diagnosed with autism...but that treatment is costly (an estimated $17,000 per year and 1.4 million over the course of that child's lifetime) .  Although the American Academy of Pediatrics recommends screening children beginning at 18 months, most insurance providers will not give an official diagnosis until age three...even though research as shown that early intervention services can greatly improve a child's development.  As early as 1992 it was recognized that developmental trajectories were already well established by the preschool years and delays in communication could have lifetime affects on these vulnerable children.  However, if these same children were intervened upon early and given a substantial "dose" of treatment (in the form of behavioral, occupational, and speech therapy among others) then by the time they reach school age they have a chance at being indistinguishable from their peers.

I'm still unsure as to why there is a huge disparity between the research in favor of early intervention and the actual diagnoses being made.  Many have pointed out that even if Jackson did not receive an official diagnosis from our insurance he could still be evaluated and treated by our local regional center.  While this is true, the actual therapy hours available to him stand to be much less and therefore would decrease the "dose" of helpful interventions he would be receiving.  As it is now he has been approved for unlimited therapy hours by our insurance.  He also receives services from the school district and the regional center.  Some families that do not receive medical diagnosis from their insurance are only approved for 10 hours or less per week...they are then faced with paying for needed therapy out of pocket.

The other problem we've seen since entering this mystifying world of autism is the prevalence of families who want to ignore the warning signs.  Many have asked us if we are going to get a second opinion.  Our answer is a resounding no.  At the end of the day neither of us care what label they give our child so long as they are giving him the treatment he so desperately needs.  To fight the diagnosis and label would be to fight and perhaps lose the countless hours of therapy he gets...and that is simply counter intuitive in our book.  The therapy he undergoes causes him no harm.  It is all play based and usually fun for Jackson.  Although they impose demands upon him, he is rewarded for complying with those demands.  His life is getting easier as he is learning how to effectively communicate with those around him (via sign language as he remains non verbal).  Our little boy is blossoming with all the hard work his team is doing...and we couldn't be happier.

I know that our family and friends simply want the best for us...but I assure you we are carefully and thoughtfully navigating every aspect of this journey.  I feel for those families who have to struggle to obtain services for their children and I'm thankful every day that we have a team of doctors and an insurance provider who understand and agree with the overwhelming research in favor of early intervention.

At the end of the day we only want what is best for our child and our family.  We have embraced this journey as best we can...some days are a struggle but we have an army behind us who are there when we fall.  Thank you to those who have been there for us...your support and love is not unnoticed.  We also rest firmly in our faith and know that God gave us this child because we were well equipped to help him...for that and so much more we are eternally grateful.

Between Nothing and Everything

There are moments in life that you know you'll look back upon someday and remember.  Maybe you'll remember them with gratitude...or a smile...or an element of sadness.  How I'll look back on today is not yet determined.  

Let's back up a bit because I feel as if I'm being a bit vague.  My point in immortalizing this is not to garner sympathy, but rather to share this crazy journey in an effort to someday help others...in the meantime I'd rather not walk it alone.

I started having headaches a few months ago...but not just headaches, migraines.  Ones that didn't seem to fade and instead increased in frequency.  One afternoon it all became too much and I asked Jon to please take me to the ER.  Once there they had to do a complete workup as I've never been diagnosed with migraines.  I had the complete run of testing including a CT scan and MRI of my head.  Nothing showed up that could be the cause of my headaches...but they did find a small meningioma (or brain tumor).  I later learned that meningiomas are fairly common and almost always found incidentally.  Mine was small (1 cm by 0.5 cm).  It wasn't pushing on any other structures nor did it seem to be an issue at all.  I was advised to follow up with my primary care doctor.  

Thankfully I'm actually friends with my primary care doc because I used to work with her at Mercy.  So I sent her a quick email asking what I should do next.  She put in the requisite referrals to neurology to follow up on the headaches and neurosurgery to follow up on the meningioma.  When I met with the neurosurgeon we devised a plan to simply monitor the tumor with another MRI in 6 months.  If it grew at all in that time we'd remove it...if not we'd continue to watch it until it inevitably grew large enough to be removed, "but that could be when you're 60," he said.  I casually mentioned my history of cancer and he thought that maybe it would be prudent for me to get a PET scan to rule out any metastasis as that is the only other thing this tumor could possibly be (besides the very likely benign meningioma).  

Again I typed up an email to my MD and she put in a quick referral to oncology.  They were on board with the idea of the PET scan and I got an appointment rather expediently.  As the day of the scan approached I was more concerned with the 10 hours of fasting than the actual test results...but I did as they said and only consumed clear liquids for the day...even though I was working and probably a beast to deal with that day (sorry guys)!

The test was uneventful...boring and long, but not too awful.  They inject you with radioactive glucose, you wait for it to work, and then you lay in the scanner while the machine looks at how your cells use the glucose.  Cancer cells utilize glucose more readily and hence have more avidity (they light up) on the scan.  

After the test Jon took me to get some food and we went home...sadly I couldn't come within a meter of the kids since I was still harboring some of the radioactive agent...so I drank plenty of water to clear it quickly (mama needed to hug her babies)!

The next morning I logged into my computer at work and pulled up my chart.  At the facility I work at we are allowed to read our own chart (just not that of our family members).  I found the scan from the night before and double clicked it to read the radiology report.  I've been a nurse for a long time and read hundreds of radiology reports.  I'd already read my CT and MRI reports numerous times.  I understand the lingo...I usually scroll to the end for the concise reading.  This time I read every word.  

3 avid nodules.  Three.  In my left axilla.  My lymph nodes.  Three of them.  One 11mm.  One 9mm.  One 6mm.  "Further testing recommended to rule out active disease"...

I logged off my computer and walked to my charge nurse.  I was crying.  I could only motion him to a computer where I logged on again and had him read the report.  Maybe I wasn't reading it right.  His face said I was.

Ok...maybe it's nothing.  Possible.  Maybe it's something early.  Also possible.  Maybe it's everything...

So that's where we are at.  This weird limbo in time between nothing and everything.  I've spoken to my doctor and our next move seems to be biopsy.  Let's see what those little lit up suckers are.  Why are they lighting up so readily?  Why only on that side?  What are they trying to tell us?

I guess we'll find out...soon.  Until then, we wait...and pray...and hope...and tell ourselves it's nothing, but prepare ourselves for the everything.  

So maybe someday I'll look back on today as the day that started it all...and maybe I'll look back on today as the day that was nothing.  Either way today was a stark reminder that life is all those little Hallmark sayings wrapped up in the mundane moments.  It is precious.  It is short.  It is meant to be lived...and enjoyed...and loved.  It is dirty, and ugly, and difficult.  Life. Is. Everything.

So whatever these three little nodules say...I mean to live through it.  Whether it's nothing, or everything.  Life is meant to be fought for...and I'm ready for a fight. 

Always Go Towards The Light

It's a beautiful morning...I'm alone in my king size bed covered in fantastic new linen (gifts from our insanely perfect wedding two weeks ago)...my husband just left for work...I'm sipping coffee and looking out my bedroom window on the 2.4 acres we own...I'm missing my kiddos more than words as they are spending some quality time across the country with their dad, but I'm feeling the little man inside me kick up a storm to remind me that I still have one baby with me. 

Life. Is. Good.

But if you know me, really know me, you know that it hasn't always been this way.  I did not arrive at this point by accident, nor luck.  I arrived here through trials and tears...through the traumas of war and the trauma of a marriage no longer salvageable...through blood and sweat...hard work and dedication...faith, hope, and a whole lot of grace.

I've been meaning to write this for a while...to put into writing the evolution of my life over these past few years...to remind myself someday that life can change unexpectedly and one must always be thankful for what they have...cherish it, hold it tight, and work like hell to keep it.

Two years ago I was still in Afghan land...in that place that I still haven't really put into words...that place that changed me at my core...made me more grateful, made me not take anything for granted, slowed me down and woke me up.  Even though I was surrounded by trauma and sadness...I found my tribe, my people, my Afghan family.  The people who saved me everyday, gave me sunshine in the rain, and held me when I fell...out there and back at home. 

Two years ago I was out there...but my life at home was falling apart.  Had been for years, but now it was in a full on collision course with the end.  That train never stopped and the day after I came home from nearly a year away we began the official process to end our nearly 11 years of marriage.  Although it was what I wanted, divorce is NEVER easy.  It's a process that strips you to your core and examines parts of your soul you've never seen.  It takes two people who were once a team and puts them into the arena for a Hunger Games type battle.  It drags family and friends into the muck to choose sides, hold up alliances, and make the waters even murkier.  It's ugly...even when it's mutual.

As I laid in bed next to my mom one night before we moved (since I was no longer sharing a room with my ex), I cried.  I cried because I didn't know where we were going to end up...I didn't know how custody was going to play out and if my ex would truly fight me for our kids...I didn't know anything.  I just didn't know.

We sold our home and I moved with my mom and kids to a rental nearby.  In the course of all this I had surgery to repair my knee that had been injured in combat training...I was reduced to crutches and was no longer the strong, solid chick who could outlift some of the dudes...but rather a former shadow of myself.  Sleep deprived from stress, unsure of my future, limited by my new disability...

It's in these moments when your life has shattered to pieces that you have a choice...you can choose to sit among the wreckage...or you can choose to take the pieces and rebuild them into something stronger and more beautiful.  You can choose to see the light that is always at the end of the tunnel...even if it's so far off in the distance that you have to use binoculars to see it...and move steadily towards it.  I assure you that in this process of rebuilding that you will make mistakes.  Pieces you thought fit, won't.  You'll possibly have to begin again and start from scratch.  But the light will never move...and if you keep your eyes fixed upon it you'll reach a point where you are blinded by it's brightness.

I finally got to a point, on my own, where I was making it happen.  Custody had been worked out, the kids had started at a new school and were happy, I'd started a new endeavor as a health and fitness coach, I was slowly regaining my strength and with it my confidence.  Things were looking up...and then they took a drastic turn.

A long time friend was returning from his own tour of Afghan land and wanted to meet up for coffee to discuss life-post-Afghan and catch up as we hadn't spoken in almost a year.  I agreed...but as the day grew closer some strange part of my personality took over my better judgement and asked him why he wasn't just making this coffee meet up into a date...like a real date.  He took some time to answer (as I now know he always thinks carefully about what he says before he utters it) and told me simply that he never thought I'd be interested in going on a date with him...I told him he should ask.  And he did.

With that one small turn of fate my life changed course entirely.  I firmly believe that once your feet are on the path they are meant to be on, doors open and opportunities arise around every corner. God, the Universe, whatever you believe in (personally I choose Him) rewards you for moving in the right direction by consistently giving you more chances to keep going forward.  But this is not a passive process.  You have to try.  You have to work.   You have to be willing to struggle a bit.  It's not easy, but at least you finally are moving towards that light with a vengeance and a purpose.

He moved in, we got engaged, the kids loved him...my ex and him even got along really well...we got pregnant (wayyyyyy earlier than we planned, but again, you take the chances and keep moving forward)...we found our dream home and bought it, we moved, and we had the wedding of our dreams.  Life is far from perfect now, but I wake up every morning, look over at my sleeping husband, and say a prayer of thanks for this man and this beautiful life we are creating.

Sometimes the road seems long...but look hard for the light and never, ever stop moving towards it, because standing in the light is the most beautiful experience you could ever imagine.

Unraveling

I apologize in advance if this post seems overly personal and the thoughts extremely scattered.  They are and it is.  This is merely MY experience coming home.  From deployment.  From a combat zone.  From a trauma hospital.  Back to my life that has completely changed in the time since I've returned.  I'm not the same person who left over a year ago.  That girl is gone...

Dear Mom,

I've been home almost four months now.  Four months since I set foot on US soil again.  Yet some days it feels like I left yesterday.  I've struggled to put this all into words... but I'm going to try because I feel like it may be a form of therapy, and trust me, I could probably use that about now. 

People constantly ask me questions..." How was it?" "How are you?".  Such well intentioned, innocent questions.  And yet the answers still allude me.  It's not that I don't try to answer, but in all honesty I don't think I can.  So usually I just give the same answer, "life changing."  It was...

They prepared us so well to go there.  Every element of trauma, combat, and life covered in excruciating detail.  Of course they glossed over the things we could expect upon return... and then again as we processed out in Germany.  But we barely listened.  We were tired.  Really tired.  Bone deep kinda tired.  Seven months in Afghan land will do that to a person I guess. 

We were given lists of symptoms we might experience as we returned to our "normal" lives.  And I truly think if life occurred in list form I may have understood the signs.  But that's not the way it works.  Life isn't organized like that.  Life is messy.  Sticky fingers, kids yelling, people shouting, world changing kinda messy.  It was easy to miss the signs.  I missed the signs.

Put me in a small space with crowds and you'll find me pressed against a wall on the verge of tears.  Normal. Perfectly normal.

Sleep... or the lack of it.  Waking up every few hours from the nightmares not always of things I'd seen... but of being trapped, unable to get home.  Of course sometimes there were bombs and broken bodies, but that isn't always the case.  Normal.

Racking sobs at a commercial or a movie trailer that vaguely reminds me of life there.  Tears running down my face dragging my mascara with it.  Normal.

But it's not normal, is it?  I'm not "normal" anymore.  WE aren't normal.  Those of us who have lived in that place aren't normal.  We have to adjust to our new normal, but we aren't the same.

But why?  I wasn't beyond the wire constantly on guard and fearing for my life with every step.  I wasn't wearing my body armor knowing it was the only line of defense between me and an IED.  I wasn't the one rolling into the trauma bay on a gurney and full of blood.  That wasn't me. 

I've been a nurse for a while now.  I've worked in a trauma center since day one.  I've seen death on every level.  The expected, the senseless, the hopeless.  I've seen it all.  I've held hands as life has slipped away.  I've been the only witness to last breaths and final prayers.  Why was life and death in this place so different?

I've figured out a small piece of that difference.  A small string in the unraveling of this post-Afghan life.  It was about walls.  Those high, almost insurmountable walls I had built around my heart.  In the states we all know that every patient has a story.  But I don't know it.  I don't live it.  I can keep them at arms length and not let it get to me.  Those walls came down there.  The patients there were not merely patients.  Many were friends, comrades, brothers and sisters in arms. 

The boy in trauma bay one had sat at the next table at the DFAC that morning.  The girl in bay four had passed me on the street on her way to the motor pool to head out on her mission.  The Major standing at the foot of the bed had been in front of me at church last Sunday.  The boys milling about the trauma bay had been here before, many times.  Some so often they'd earned nicknames.

I'd stood beside them at countless Purple Heart ceremonies.  Seen their faces in too many crowds.  Knew their names.  They were fighting for me, with me, next to me, in front of me.  They were so familiar to me that every time my pager went off it came with the fear that I would know the face in front of me on the gurney.  These patients were personal.  They were not nameless.  I knew their stories.  Even if I didn't know them directly, I lived the same life they did.  I wore the same uniform. There were no walls.  Only us against them.

While I still don't entirely understand the why of it all, this is a start to figuring out why a piece of me will always be at the base of those mountains in Southern Afghanistan.  A piece of all of us will be... and in that we have an everlasting camaraderie and kinship that will last a lifetime.

I know this is only the beginning of putting these pieces back together.  It's a long road and I'll always be a bit different now.  But I'm not broken, just bruised.  Fixable.

Life.  Changed.

XOXO,

Me

The Low Down Skinny (or Healthy)

There's a reason this blog was named Identity Undecided.  Basically this girl goes down so many different life tangents it would have been impossible for me to stick to one topic, so I gave myself the ability to be ADD with this blog (didn't need hindsight for that revelation!).  That being said, I'm sure many of you are wondering what the heck I'm doing lately with this "fitness coaching" stuff... let alone with a multi level marketing company like Beachbody.  Well, let me tell you a story...

In reality, this was not a spur-of-the-moment decision.  My journey to coaching started years ago.  When I was a new nurse on night shift I was tired.  Like Tired (with that on purpose capital T).  There isn't quite a tired like the after night shift tired.  But a girl needs to look good in those scrubs and stave off the dreaded nightshift weight.  I wasn't really training for any crazy run or triathlon at the time (and I hadn't gotten the CrossFit bug yet) so I needed to do something.  I had heard about this program called Insanity.  It seemed totally something I'd be in to.  So I conned my friend (fellow nightshift nurse) Alli into joining me in this program.  We'd meet daily to complete the crazy, heartpounding, sweat-inducing suffer fests (I say all this tongue in cheek because I LOVE Insanity).  Turns out, that sh*t works.  Like really works.  I felt comfortable rocking a bikini after that program.  And then I moved on to Insanity Asylum... and then P90X.  I did them all... with Alli, alone... whatever it took.  I loved it... every awful second. 

And then I found the next race to train for and got lost in my world of endurance sports... joined the Navy Reserves, and eventually deployed to Afghanistan... where I fell in love with CrossFit.

But before I left I saw that my coworker and friend Jaclyn had begun her Beachbody journey.  She has always been someone I've looked up to.  She is a beautiful soul who has poured her heart into her business, her coaches, and her customers.  Her love of people and their fitness journey was inspiring.  She reached out to me but I wasn't quite ready to join her... leaving for deployment kind of threw a wrench into life.  I told her then, over a year ago, to keep me in mind... something in her journey resonated with me...I felt like that could be my niche.

Fast forward to a few weeks ago.  I was post surgery, looking at months of rehab and not going back to full time nursing in the very near future.  Jaclyn reached out to me again.  She wanted me to join her team.  In the year I'd been gone she had built a thriving following.  She was real, genuine, and truly had a heart for helping people reach their goals.  I wanted a piece of that.  A chance to help people reach their best version of themselves.  An opportunity to enhance wellness instead of combating illness.  So I said yes.  I jumped in, became a customer and a coach with Beachbody...and haven't looked back since.

You know, it becomes exhausting as a nurse to constantly deal with illness.  Don't get me wrong, I love what I do with a fierceness.  But there is something so satisfying about helping someone along the road to wellness.  Not popping a pill, but truly getting into the nitty gritty of life.  The dirty laundry of bad habits, poor nutritional choices, little to no exercise, and an overall lack of accountability (or anywhere on that spectrum really).  To be a ray of hope.  A voice of reason.  Someone to hold a person accountable and tell them that you know what... you can do this.  Honestly.

But let's be fair.  Beachbody sells products, right?  Yep, they do.  Great ones at that.  I have never been one to sell things I don't believe in.  I have to be fully invested and in love with something to even think about promoting it.  And I love Shakeology.  I love Insanity.  I love P90X.  And I'm loving my 21 Day Fix kit.  I also love running, biking, swimming, and CrossFit.  That will never change.  I've incorporated the products into my life.  Sipping my Shake O after a tough workout.  Popping in a DVD when I really don't have time or energy to get to the gym.  I'll never be the girl who exclusively works out at home.  And honestly, right now I'm so limited on what I can do that I'm relying heavily on my 21 Day Fix and it's portion controls to keep me in check.  And you know what... again?  That sh*t works.  Like really works (I'll prove it soon).  Fancy that.

So really I say all of this to say that I'm not here to be a gimmicky salesperson.  I'm here to help you.  Honestly.  Genuinely.  I want to join people on their journey to health.  And I want to be joined on mine.  I want people on my team that have the same vision as I do.  I want people who push me to be the best coach I can be, and I need accountability too.  I believe in the products Beachbody offers.  I spend my money on it...I work hard for that money and I believe in investing in my health and the health of my family. 

I hope this gives you all a clearer understanding of this new "thing" I'm doing with my life.   I'm happy, working towards healthy, and ready for this new adventure.

Got questions?  Please ask.  I'm an open book.