In the spring of 2006, our oldest son Josh was a senior in high school, in line to graduate with a 4.0 GPA. He'd been active in the Civil Air Patrol, and our Sheriff Department's Explorer Program. By spring break, he had received numerous college scholarship offers and a Senatorial Nomination to West Point. The day before spring break began, the dream he'd worked for years to achieve came true; he was accepted into the United States Military Academy at West Point. Josh was to be one of the select few to report to West Point in June of that year. His plan was to major in International Studies and Foreign Languages, with his eye on a career in National Intelligence. He did graduate in May of 2006 as a Valedictorian of his high school graduating class. But his sister accepted his diploma at the ceremony in his absence, because all of those plans changed in a heartbeat five days later.

On the last day of spring break, playing a game of pick-up football with his buddies, Josh suffered multiple concussions, but chose to "play through" the injuries until he ultimately collapsed on the sidelines after one ill-fated tackle. We'd find out later he suffered from what was termed Second Impact Syndrome.

 He was rushed to the emergency room, admitted into the Intensive Care Unit, was immediately put onto life-support, and into a drug-induced coma to minimize brain activity; all in hopes that it would minimize the brain swelling resulting from the concussions. Without essentially "shutting down" his brain activity, he wouldn't have made it through the first day or two alive. We set up camp in the ICU waiting room, maintained brave faces as best we could, greeted the onslaught of visitors, we searched for answers, awaited any shred of news, we remained hopeful, but we were on edge due to his very fragile and unsure condition. Within a matter of days, all efforts to reduce his brain swelling had failed, and we were told that he wouldn't make it through the day without an emergency craniotomy.

 At this time, the initial shock of the injury had just barely settled in, but this news took us into a state of disbelief and confusion. Despite this, we knew this was not only his best chance of survival, but it was his only hope. We weren't ready to say goodbye to our 18-year old son. Explaining this to his siblings, family and friends made it very, very real but at the same time very surreal. Josh did survive the surgery, which literally saved his life. The focus of his care after surgery changed immediately; they began the process of bringing him out of his coma, and immediately launched into a process of endless tests. They could now be proactive as opposed to being reactive. Josh had yet to move a muscle, had yet to open his eyes, had yet to do anything that was more than a blip on the monitors, but at the time, those blips were the only remaining fragment we had of our son. One miraculous day a few weeks after the injury, his eyes finally opened to a blank stare. Soon after we believed we felt that first minute sensation of the slightest squeeze in his hand, and we believed on one particular night that we saw the slightest of eye movements during a televised hockey game. It was our first glimmer of hope in weeks.

 Our initial meeting with the neurologist and the neuro-psychologist left us full of hope that there was still a chance that he may eventually recover to lead a relatively normal life; we eagerly embraced this hope after wondering for weeks if he'd even live. These first few weeks were our introduction and cruel immersion into the world of brain injury. Like most people, we had heard of, and even cared for kids with concussions, but it soon became apparent that we had absolutely no clue about concussions and brain injury. Like millions before us, it began to sink it that "it had happened to us" and our lives would never be the same.

 After about a month, Josh had stabilized and was released from ICU; we were transferred to a Long Term Acute Care Hospital. He had been taken off life support, and successfully brought out of the coma. He was still being tube-fed, he was still on a respirator to assist his breathing, and was heavily medicated for pain. But he was slowly becoming more alert - his eyes were open and he gradually seemed to start to recognize us and his surroundings, acknowledging us with very limited facial expressions. We tried to tell him what had happened and that they were doing everything they could to make him better, but there was no indication that he understood. That same blank stare. He had no ability for any physical movement - not even the means to turn his head bedside in response to anyone, no speech, no motor responses beyond slight movement in his left arm. But he was still with us, and his condition had improved. But along with his gradual "awakening" came the onset of severe pain, agitation, and "storming".  

  The storming was so severe at times that he had to be restrained so that he didn't further injure himself, and we found ourselves measuring time by "the next dosage of meds" to control his pain. He had gained enough movement in his left arm to become fairly adept at maneuvering out of the restraints - to us, it was a testament to his determination, but still a dangerous proposition with his skull plate out. We were told that as long as we weren't moving backward we were making progress, but we would have to develop a new paradigm. We had to re-define progress and recovery; we had to embrace measurements, goals and improvement in "baby steps". Many years later, that holds as true now as it did then. The challenges ahead of him and on us had just started to become apparent.

 Josh's initial therapy was 'simply' sitting up in bed at a 30 degree angle, propped up by pillows on all sides. Over the course of weeks, he graduated to occasionally stretching out his limbs and joints (his first Physical Therapy), and testing his swallowing capabilities (his first Speech Therapy). Eventually, he built up his strength enough to be able to be transferred physically out of bed and into a therapy chair for a half hour. This simple maneuver was intensely draining, and being beyond the walls of his room proved to be too much stimulation. Shortly after, he endured his next surgery to replace the skull plate. It seemed a catalyst of sorts as he took steps in improvement - he developed good movement in this left arm albeit without hand-eye coordination, showed slight movement in his left leg, and became more alert and aware. Two months post-injury, we were sure that he recognized us as family on some level. When not suffering from the pain and the storming, he was quick to laugh and smile and our hopes swelled. In June we got the word that there was room for us at Craig Hospital to begin rehabilitation. We had been anxiously awaiting admission as we'd heard so many good things about them; we were thrilled to move on and be admitted to Craig.

 Craig was the real beginning of our own personalized crash course in traumatic brain injuries, and one of our few respites from the demands of 24 hour attention. Josh's new neurologist advised us that his stay at Craig was our opportunity to get some rest, get things at home in order, settle things with our jobs, and come to grips with his injury as our life going forward would be the biggest challenge of our lives. He was right, and we found the staff could be trusted to care for Josh while we were trying to get our lives in order. Really, it simply meant we could sleep in our own beds most nights because we were still there most days and late into the evenings every night. They immediately put him through another extensive battery of tests, and the scans confirmed damage to the left temporal lobe and frontal lobes of his brain, but no damage to the other lobes, the cerebellum or the brain stem. It also indicated an accumulation of cerebrospinal fluid (CSF) at the insertion point of the skull plate, and enlarged ventricles. This was when we would first begin to learn some of the more detailed terms that would come to redefine our son, and our own lives going forward; aphasia, apraxia, and hemiplegia. It began to sink in that we were in for quite a ride, but even then the prognosis was too unsure to be spoken.

 Josh settled into Craig, monitored 24 hours a day. On good days, he was able to participate in short mat classes to start developing range of motion, exercising and stretching muscles (after 2-1/2 months, Josh still had not been able to move a single muscle with purpose, save for his left arm). On bad days while storming or suffering from pain, he stayed in his cocoon of a room, riding it out; at times he was almost manically happy, and at other times storming so bad that our mere presence in the room was too stimulation and we'd have to leave for his own good. But gradually, he began to withstand the time out of his room, mat class, and acclimate himself to being in a wheelchair for up to a couple hours a day, working on stamina, orientation, strength and vertigo. We seemed headed the right direction. However, towards the end of June, we'd begun to notice declines in his performance in therapies, alertness and responsiveness, highlighted by increased agitation and confusion. We were no longer 'moving forward'. A new CT scan confirmed a greater accumulation of CSF which was once again increasing pressure on the brain. Hydrocephalus had gradually started to visually affect him and hinder his ability to progress. It was determined that the insertion of a VP shunt was needed since he was producing CSF at a greater rate than his body and his bloodstream was able to absorb. A few short days of recovery later, he was back at his work on his therapies. So, three life-altering months after his injury, things were looking up once again and we heard the words "potential discharge" for the very first time. A target date of September was set.

 Throughout July and August, the CSF flow from the shunt was gradually increased to normalize the pressure on his brain, his progress improved and we believed him to be back on track. The reductions in pressure were adjusted every week during this period, and at each change in flow he would have to spend a couple of very difficult days of re-orientation due to the continually decreasing pressures. Each reduction eventually increased his cognition and ability, but it also resulted in some pretty serious initial disorientation and perhaps an awakening of sorts for him. Cumulatively, this process resulted in helping Josh become more pleasant, alert, cognizant and responsive, but every weekend was spent fighting through the constant changes to adjust as best he could for Monday morning therapies. Over time, the storming had pretty much ceased and his personality began to show again; he started cheating at thumb wars and reveled when he won (which was always), he started making faces at people to elicit a laugh, he began to feign surprise and urgency just to get a rise out of us, he was sharing "secret", unspoken jokes with his brother, and he began communicating much better with his facial expressions so we weren't so completely in the dark about his needs or wants. He also unashamedly turned on his charm during this period and began to flirt with all of the nurses and techs. He was an 18 year old male after all and got a free pass, but he took great joy in establishing his reputation. He stole a lot of hearts, became one the "favorites on the floor", loved to hang out at the nurse's station to interact with everyone in sight, building relationships that last to this day. All without being able to speak a single word, move his limbs, process the overwhelming activity on a hospital floor, or be up in his chair for longer than a few hours a day.

 He began to really make some headway in his therapies, responding reliably yes and no with head movements, re-learning how to use a variety of simple switches and tools to gain some semblance of control over his environment, and gaining more movement in the limbs on his left side. Also, during this period of time, they continually downsized his trach tube in preparation to wean him off the ventilator, so he was challenged to maintain his breathing for the first time since the injury. They also began a series of spasticity treatments on his right arm in attempts to reduce the severe contraction of his muscles.  Treatments consisted of injections of botox and/or phenol alcohol into the muscles which offers increased stretching and temporary loosening of the muscles - in essence these treatments kill the nerve endings in hopes that they would improve during their re-growth. Used in conjunction with splints, braces and/or casts the hope is to permanently lengthen the muscles to lessen the contraction of his muscles. These initial treatments were once a week over the course of a month, gradually stretching out the muscles and casting them in place over several days. Five months after admission into ICU, the trach was finally removed, at which point Josh was finally able to eat real food again, and the feeding tube into his stomach was eventually removed as well. It quickly became apparent to us as well that he had developed quite an appetite over that period of time. He had lost 35 pounds over the summer, which is significant for a young man that weighed about 145 to begin with,  and he was thrilled to make up for lost time, gaining back as much as 5 pounds a week. Therapy sessions were started to re-teach him how to use a fork so he could begin to feed himself. With the absence of the trach, he also started experimenting with his vocal chords again and creating for the first time a wide variety of noises. We initially compared this to an infant first learning to talk, but we quickly had to correct ourselves; children learn to speak through mimicking and assigning meaning to words. Josh has to physically re-learn how his tongue, lips, teeth, breath, and vocal chords work in harmony to produce any given sound. You don't teach a child HOW to form a sound - this is all very literal therapy, baby steps - have you ever stopped to think HOW to make a "P" sound, a "D" sound?  Every sound became a therapy of its own, delaying any application of speech - that became a future goal. With the trach finally out, and setting aside the obvious benefits of breathing on your own, we were all very pleasantly surprised to hear him laugh audibly for the first time during one of his respiratory therapies almost six months after his injury. This was a huge milestone -  I'm not sure who was more surprised, him or us, but we all had a good laugh, and a good cry!! Speech therapy could finally get to work. July and August were very busy months, but seemingly very productive.

 A new CT scan in September indicated that the shunt (on the right side of his skull) had done its job, evident in his ability to work and progress during those months. The same CT scan also indicated that a pool of fluid had gotten trapped at the re-insertion point of his skull plate on the left side. This was causing increased pressure on his brain in this location. Also during this period, due to Josh's increased participation in physical therapy it had become evident that the contracture of his muscles (arm and legs) was severely limiting his abilities and progress. It was decided that two surgeries should take place to help him continue his recovery; first, a second shunt put in place for the left side of his skull to reduce the build-up of fluids trapped there, and secondly, an intrathecal programmable pump implanted to deliver a muscle relaxant into the base of his spine to help with his range of motion and flexibility, specifically targeting the lower extremities. With these procedures completed successfully in September, they revised the discharge date to November in hopes to gain 60 days of quality, healthy rehab time with these 'tools' in place. Unfortunately, that optimism dissipated within a matter of a couple short weeks. Josh had become physically ill, was experiencing a great deal of pain and began storming once again. We were going backwards once again, and it took a few days to determine why.

 Ultimately we found that the shunt originally placed on the right side had become infected, had spread to the shunt just placed on the left side, and was rapidly spreading to his brain. Aggressive anti-biotic treatments were unsuccessful, so surgeries were scheduled once again to remove both shunts, and it was back to ICU for almost a week in early October. On one hand, these brain surgeries presented another very real life or death situation, on another we had become almost numb to them and it was just another "routine" surgery. We were exhausted in all ways, shapes and forms, but they were absolutely necessary so we proceeded and spent more nights in the waiting rooms while Josh endured yet more surgery. Our second homes for the last six months. After these procedures and without the shunts in place, the fluids and the pressures began increasing again, and it was somewhat of a race against time with the anti-biotics to rid him of the "bug"….and obviously, lost time in therapies and rehab as battling the infections was a full-time job. He was finally deemed clean enough at the end of October to be scheduled for surgery to replace the shunt one more time. Then it was back to gradually reducing the pressures, the re-orientations, and the re-awakenings. Déjà vu all over again. It goes without saying that the November discharge date was off the table - as was the additional 60 days of quality rehab time. After having been 'snake-bit" with discharge dates, we would just have to play it by ear and see how he progressed.

 We received a gift on his 19^th birthday a few weeks later when he was finally deemed "bug-free", healthy and recovered from his most recent round of surgeries (the eighth surgery in a span of eight months). It was a truly birthday to remember!

 Throughout November, he'd again made good progress when he was feeling well physically. He'd learned to move his wheelchair some on his own with his one good arm, he'd started to learn to feed himself, he'd started to identify some objects correctly on flash cards, had become much more accurate with his positive and negative responses, had increased his range of motion with his left arm to the point of being able to play a game of "catch" with a nerf ball, and had built his endurance back up to be up in his wheelchair for the better part of the day. He'd made enough progress in Speech Therapy to mimic a number of words, although he still couldn't make the connections necessary to initiate or apply his speech voluntarily.

 Right before Thanksgiving, we were surprised to learn that they had set a final discharge date of December 15^th, giving us three weeks to prepare. So we set about our next round of lessons - learning how to implement his care plan, learning the details of his day-to-day care requirements through three weeks of intensive training, and to make any final home preparations to get us ready for our next phase of life. At our final team meeting at Craig, his prognosis was laid out for us. They believed that his chances of ever walking again, of ever regaining use of his right arm, and of ever having meaningful speech - and consequentially ever living anything resembling a normal life, was slim to none. He would always be dependent entirely on us. There was even one opinion voiced that he was unable to understand what was being said to him - relying more on tone and inflection than actual words. While we believe we were truly blessed to have him at Craig throughout half of 2006, we couldn't completely buy into the details of the prognosis, and we rejected out-of-hand the contention that he was unable to understand what was being said to him. We had just spent almost every waking moment with him for the last nine months, and knew that this idea was just wrong. He got it. He understood. He just couldn't reply or react as we can. Nevertheless, we were ready to strap in and get to work. Josh did, and does, understand this - and has never given up on anything.

 For us as parents, 2006 was defined by unending nights in waiting rooms, endless hours meeting and trailing doctors and nurses, countless days getting through the next good, or bad day, weathering the insecurities and anxiety of the unknown, feeling the tension of multiple brain surgeries, giddy with hope garnered from even the most minute success, and feeling the devastation of the many setbacks. We were emotional and physical wrecks; exhausted but coming home with our son!

 In contrast, 2007 was characterized by furious activity. We learned to care for our disabled son, we tried to reintegrate ourselves into our jobs, we negotiated for benefits and insurance, we arranged for in-home caregivers, nurses, therapists, out patient visits. We begged for financing, obtained equipment, built a home addition, made major home modifications. We rearranged and reinvented our lives, and by the end of the year (almost a year and a half post-injury), we were all finally able to move back into one home for the first time!

 In the years since, Josh has continued to work harder than any of us - his full-time job healing and working his therapies is very demanding, and although progress continues to be measured in very small 'baby steps', he hasn't let up. His physical, occupational, speech and cognitive therapies continue to become more challenging, more strenuous and more productive. It's very difficult to relay in words his progress - honestly, some people may not see progress, but we live within our new paradigm of 'baby steps' and marvel at his efforts and his progress. We suspect that he may well be dependent on us in the future, but he remains an inspiration to us all, and we refuse to take anything off the table for him. We've actually been very blessed in a number of ways; first and foremost, we have our son with us, who was literally hours away from not surviving a traumatic injury. He's got a great attitude, maintained a very unique sense of humor, remains determined and loves life. He's become our inspiration, our teacher, and our hero. We've been lucky enough and worked hard enough to obtain the things we need to keep him progressing through the help of friends, family and some incredible caregivers. The strides we've made in providing for him would have been impossible with the support system they provide. Unfortunately, through our experiences, we've been witness to some incredibly heart-breaking and devastating scenarios after an injury such as Josh's, and we recognize how truly blessed we are now, and how truly blessed we were before this injury. We just wish we had known….

 We move forward, all doing the best we can - watching Josh amaze us at every turn. The tension and stress of those days is gone, only to be replaced with the rigors of our new lives. Even this life has become, in an odd sort of way, 'normal'. But, we never would have believed any of it if it hadn't 'happened to us.'