incompetence :(

Hey everyone- sorry for such long lapses in between posts. Life has a way of being incredibly hectic and confusing out here. :) Since I last wrote, we have had a lot of changes. Mark finally underwent that surgery to help relieve his pain. When his left brachial plexus was torn out of the spinal cord, it left him with scar tissue on the cord- causing him extreme and constant pain. Our incredible neurosurgeon out of Johns Hopkins wanted to perform the surgery back in May, but our doctor here at Walter Reed was negligent and his oversights delayed this critical procedure by two months. Rather than retell the entire story, I figured it would just be best to post the letter that I just sent the commanding officer of the hospital and patient relations. If we do not get satisfactory outcomes from these people, I am prepared and very willing to contact congress, or anyone else that might be compelled to ensure that our warriors receive only competent and complete care.

The kids are all doing well- we are back into the homeschool swing of things and enjoying spending a lot of time together. Marky is excitedly collecting all fifty states quarters and is consumed with curiousity regarding state history, and Isaac was utterly thrilled that Batman has made a return to the big screen. Ariel is still obsessed with ballet and is turning into quite the little dancer. :) I am plugging along- it can be overwhelming- all of Mark's care and needs are very time consuming and present some challenges, but we are holding tight and continually praying for strength. Now that his pain is better (except for the surgical pain- which is temporary), I am excited to see him begin to enjoy life again.

So... for that letter.....

To whom this may concern,                                                                                                 August 4, 2012

       Please allow me to first express my appreciation for your time and understanding. I am consciously divulging some intimate details of our lives in this letter because I believe they are necessary for the reader to sufficiently grasp the extraordinary stress and pain that my family has endured due to our doctor’s negligence.

       My husband, Staff Sergeant Marcus Burleson, was injured in Afghanistan on December 9, 2011 while disarming an IED. He was on his hands and knees over the device when it detonated, severely injuring him. Mark suffered an amputation of the right forearm, a severe dislocation and brachial plexus injury in the left arm, a broken neck, traumatic brain injury, shrapnel in both eyes (blinding the left), many broken bones, lacerations, and burns to his face, he lost his spleen, and sustained much dental trauma. The past eight months have been laborious and riddled with pain. At first glance, Mark’s main injury appears to be the amputation, however the brachial plexus injury surpasses all other challenges in regards to pain, limitations, and frustration. The arm is paralyzed completely, his hand hangs lifelessly. I know that it’s appearance depresses Mark and he spends hours staring at his useless fingers, daring them to move. Most significantly, the injury is the source of unbearable pain. The force of the explosion caused Mark’s arm to violently whip behind his body, ripping the brachial plexus out of his spinal cord and virtually unplugging his entire arm. The resultant scarring on his spinal cord, where the brachial plexus used to reside, triggered massive and constant waves of pain that would frequently leave Mark screaming and gasping- even fantasizing about suicide. We would later learn that our neurosurgeon had already lost two patients to suicide because they could not live with the pain associated with brachial plexus avulsion.

       We were fortunate to be referred to a neurosurgeon at Johns Hopkins in March. Dr. Belzberg is a highly knowledgeable and respected brain surgeon and was explicitly clear upon our first meeting that Mark’s tests and descriptions of symptoms epitomized the experiences of others who had endured brachial plexus avulsion injuries. We left his office devastated but armed with the knowledge that we had to aggressively seek treatments while abandoning hope of any function returning to that arm. Even with the extreme likelihood that he would never regain the ability to use his only intact arm, Mark wanted to undergo surgery to attempt to reroute nerves and possibly, eventually allow him to bend his elbow. The surgery took place in April and Dr. Belzberg reported that the damage to his nerves and surrounding structures were extensive and that the outlook was bleak, but that he would be able to accommodate an additional surgery into his busy schedule to relieve the pain that was overtaking Mark’s life. This surgery was, according to the doctor, generally successful and often the only thing that provides relief. Mark had already tried the other medications that one must attempt before committing to the invasive procedure. We were ready to risk complete paralysis- even life- to have any degree of pain relief. Dr. Belzberg had consistently been supportive, reassuring and accommodating, but we were met with resistance in the warrior clinic from our own primary physician. Dr. Hawk was extremely resistant to the surgery and continued to subject Mark to different narcotics, a detox, suboxone and other medications that left him vomiting, depressed, in excruciating pain, and flooded with ideas of suicide.

         Our family was beginning to feel as though we had to fight to get the surgery. I could not understand why Dr. Hawk was unwilling to refer Mark to Dr. Belzberg for this procedure and why we must be subjected to months of torture. Our three children lost their ability to communicate with their father. His screams of agony terrified them, and they quickly learned that Dad was incapable of talking, playing, and otherwise engaging with his family. I became almost desensitized to his punctuated screaming, as there was nothing I could do to relieve him and I am highly stressed as I homeschool our three kids, cook, clean and take care of a husband with no hands. Mark was no longer a functional human being; every moment was a struggle and he fought just to maintain his will to live. When we finally learned that Dr. Hawk and his team was seriously proposing that they send our family to Tampa to attend a polytrauma center that specialized in pain control, I became emblazoned with anger. My children have suffered incredibly through this ordeal. They are finding support and stability in our extracurricular activities and friends here, and I was completely unwilling to uproot them again- especially since it was highly unlikely to work. If they were insistent on sending Mark to Tampa, Mark and I felt strongly that they would have to allow my family to stay in building 62 (we were told that we could only remain there up to three months while Mark did polytrauma- meaning that if he were gone for three months and one day, my family would have to pack up, pay bah and lose our convenient quarters before he returned to resume treatment at Walter Reed.) The stress that this scenario caused our family was severe. We lost sleep and could not understand why Dr. Hawk continued to refuse this surgery.

         Dr. Hawk scheduled a meeting to discuss the likely move to Tampa during the first week of July. My entire family arrived at his office about ten minutes prior to our late afternoon appointment, and sat in the waiting room almost a half an hour past the scheduled meeting. When Dr. Hawk finally sent for us, we were anxious, the children were losing patience and we were upset because the tardiness caused us to miss our daughter’s ballet lesson. Even worse, when Dr. Hawk  sat down to discuss the situation, he frequently left his office to take other phone calls- which he told us was about a different patient. I was livid. Had we been a half an hour late, we would have been denied our appointment. If Mark continually interrupted Dr. Hawk to make unrelated phone calls, we likely would have been reprimanded. The disrespect was palpable. We were very anxious about the situation and did not want to leave without answers, so we did not leave and continued to subject ourselves to Dr. Hawk’s behavior.

           The discussion with Dr. Hawk revealed something very troubling. When I asked him why he was so opposed to the surgery, Dr. Hawk responded that it was invasive and he was not convinced that Mark’s injury was a complete avulsion as opposed to nerve tears or stretching because he had not undergone the tests necessary to discern if he had been avulsed. This confused me because our original doctor, Dr. Marchessault, had preformed a CT myelogram in January that revealed pockets of fluid in Mark’s spinal cord, proving that an avulsion had occurred. When I asked Dr. Hawk what needed to be done to identify an avulsion (and why it hadn’t been done more than 7 months post injury) he replied that we would need a CT myelogram. Enraged, I told him that we had done that test in January. When he expressed doubt, I explained that my degree is outside of the medical field and that I would have no reason to know what a CT myelogram was. Mark and I emphatically suggested that he review Mark’s notes. What remained of my confidence in Dr. Hawk’s ability to care for my husband was rapidly being depleted by his incompetence. Dr. Hawk almost comically scratched his head and was surprised to note that the test had in fact been completed in January. Immediately, he agreed to the surgery, since he had also spoken to Dr. Belzberg that morning and learned that the polytrauma approach would be fruitless and that the pain was severe. So please, allow me to recap: the only reason that my wounded husband was denied life altering surgery was because Dr. Hawk had never thoroughly read his notes and was unaware of what Mark’s major injury was. Also concerning- Dr. Hawk knew that a test was necessary to determine what the extent of the injury was (CT Myelogram) and never ordered it- though he was not aware that it had already been completed. Mark’s life since the injury has been torture. There has been no respite, until July 26 when Mark woke up after six hours of surgery that involved removing four vertebrae in his upper back/neck and burning out the scar tissue in his spinal cord that was responsible for his pain. The surgical recovery has been horrific. He can not bend or twist his neck, and the pain from the actual procedure is extreme, but Mark is ecstatic because it is still a vast improvement from the nerve pain that was wreaking havoc on his will to live. He had immediate relief and a desperate desire to try and live again. He has a lot of work to do on his relationship with his children. I am excited to have my best friend back. We spent months living in an abyss of pain. Unnecessary months and unnecessary pain, which could have been prevented if Dr. Hawk had made a sufficient attempt to know his patient’s injuries.

          We understand that we will never be able to undo the past or retrieve time lost due to Dr. Hawk’s negligence. The reason we are reaching out is because this can not happen to another warrior. There are many positions for doctors that do not require such compassion and dedication. All of Dr. Hawk’s patients are wounded warriors, faced with life altering and extreme injuries. We live in a hospital. This is not routine care, and should not be handled by an inferior provider. We deserve someone as dedicated to the warriors’ recoveries as those brave men and women were dedicated to our nation’s safety and freedom. When we discuss our experience with fellow warriors, we are astoundingly met with agreement. Dr. Hawk is not trusted.  

         Finally, I would like to reemphasize my gratitude for your time and consideration. I understand that this was lengthy and contained sentimental details and I truly hope that our situation is not repeated. It is so disheartening to encounter such indifference from someone so influential in our treatment when the majority of the military and civilians seem to appreciate the warriors and desire to help them move forward.

                                                                         With the utmost respect,

                                                                             Sara Burleson

a small evolution

When we first arrived at Naval Hospital Bethesda, my children were shocked and terrified by the injuries that our military had endured. Images of amputations and disfigurements made them hesitant to metaphorically peek out from under my skirt. I'll never forget Marky's refusal to use the male restroom outside of the Marine Corps Liason office simply because he was scared- he would have rather held his bladder than face the reality of our situation. Eventually, the children would begin to play with their legos and barbies in ways that helped them cope... Isaac tucked a teddy bears legs up and told me that the bear was one of Daddy's friends- a lighthearted and friendly gentleman from our unit back home. Ariel eagerly engaged me in a series of games involving princess barbie bomb techs- we were baking cookies with our brand new sparkly pink prosthetics for the terrorists to make them happy since "they must be sad, sad mommy, to hurt so many people". Such insight from a three year old. As we met more and more warriors- and sadly welcomed other bomb techs to our community, my children began to embrace their new lives. We are priveledged to know an incredibly brave and kind man who sacrificed the majority of his limbs and sustained other injuries. My daughter hides behind my skirt for an entirely different and beautiful reason when she is around him now. With pink cheeks and a sheepish smile, she tells me that he will marry her one day and that she loves him very, very much. She draws pictures that I keep forgetting to bring him, and she emphatically talks about him and wonders when she can knock on his door to say hello. Ariel just turned four. This man is not an amputee or an injured warrior- he is simply a beautiful person worthy of admiration. No strings attached... and for no other reason than for who he is.
    It has been some time since my last post, because our schedule has just been so busy. We were able to make a trip up to Massachusetts to see my sister marry the man of her dreams, and I found solace in spending time with my brother- my best friend. We are back in the grind of hospital life and may be experiencing some more changes in the near future. The doctor's have been unsuccessful in their attempts to control Mark's pain and may opt to send him to Tampa to benefit from a polyrehab treatment center there. Neither of us believe that it is in our kids' best interests to move again, so we may ask family to go with him and temporarily advocate and support him. We have been through so much these last seven months, that it will be important to maintain the children's dance/music schedules and allow them stability. The military doesn't seem as keen to consider anyone other than the active duty individual, so I feel as though it is my maternal responsibility to ensure my children do not get uprooted again, as that will cause them unecessary and excessive stress.
   I am so grateful for all of the support and well wishes we have received from people who have read my blog. The hospital life is certainly isolating, and I miss reaching out to others. So... thank you. :)

one day at a time :)

   It's only been several days since my last post, but the time has been nothing short of a whirlwind. Most importantly, my lovely daughter turned four. I stayed up all night making her a ballerina cake- she was ecstatic- we keep birthdays very low key- no big parties or super expensive gifts- like Hanukkah, I try to keep the focus on family, love, and celebration... sharing a special day. I see how materialistic many people seem to be these days- and homeschooling the kids has helped them escape adopting the seemingly common preoccupation with being cool and having the latest everything. We had such a beautiful time- a few other of the wounded warrior families helped us make her birthday special and Ariel's adorable little friend from ballet joined us with her family.
    The Marine Corps gave us orders to detach from Mark's command in North Carolina to attach to the wounded warrior batallion... but TMO (traffic management) takes a long time to get arranged (the movers), so we are losing money since we still have to pay for our base housing in NC, but the military stops paying me significantly less than minimum wage to care for Mark. With the cost of groceries out here- and the cost of having to relocate a family of five, we have been a bit stressed financially- especially with expenses such as our trip to Raleigh for Isaac's medical care, driving back to Lejeune to collect more belongings and see Mark's old shop. We are also driving up to Massachusetts in the next couple of weeks for my sister's wedding.
   I am a bit anxious to take Mark up north. We have been on a couple trips since he has been injured- drove up to Massachusetts for Passover with my dad and to NC for Isaac's appointment, but his pain is out of control and he has days that are lost to intense bouts of nerve pain. His surgeon had mentioned that he has had two patients commit suicide because of the pain associated with the brachial plexus avulsion injuries- and Mark's is kind of a worst case scenario. I wonder how he will handle all of the commotion- I am a bridesmaid in my sister's wedding and I fear that Mark will be unable to handle the children (ring bearers and a flower girl) while I am participating in the ceremony. I am very excited to see my sister get married though- she has been with her fiance for a long time and they are so obviously perfect for each other. One of those matches that must have been created by a higher power.
    Our trip to NC was certainly emotional and somewhat dramatic. We met with his team member from Afghanistan- his wife, son and he drove up to meet us for a day and night in Raleigh. I have developed a close relationship with his wife, and was so happy to see her and her son, but was somewhat nervous to meet her husband. I have so many questions for him- and I know Mark does too, but they know eachother much more intimately than he and I do. My family is dealing with the intense aftermath of an event that must haunt this brave man's dreams. Every moment of my life- and my kids' lives- is spent affected in one way or another from the blast. This deployment will never end for us- and even though his team member is home, I know that he will always carry a burden. I suppose that is just one of the many sacrifices our servicemen and their families must make. But... I tread cautiously when discussing the events of their deployment with him, as I do not want to exacerbate his pain or trespass his threshold of comfort. There is no guidebook for navigating the aftermath of a horrific act of violence, but a huge part of me absolutely yearns for any and every detail of what happened that night- and of what Mark's life was like during the deployment before the blast. I read on his fit rep (report of his conduct, etc used to help determine promotions) that he was disarming bombs on multiple occasions while under enemy fire. I can not imagine. I'm so lost in regards to his professional life. I also feel perplexed when I learn details from others about his time over there, rather than from him. I understand why he misled me while he was in country- Mark would tell me that they were not busy over there, that it was not as dangerous as people made out.... but now I know that he was in one of the most dangerous areas- that he became a part of the most brutal and disgusting aspects of humanity- he was the recipient of unadulterated hatred and unbridled violence. Sometimes I stop suddenly in the midst of our hectic, but repetitive routine, and face realizations that this man I have been married to for more than eight years has chapters in his life that I have yet to completely read. I wonder if he will ever be able to heal completely from his emotional injuries. Our situation would be so different if he had received his wounds in a car accident or even an EOD related accident, but the truth is that he was targeted- someone wanted to kill him... and others like him. I hope spending time with Mark- with months of healing under his belt- was helpful to his team member, since the last contact they had was during the incident when he applied all of his training and sheer bravery to saving  Mark's life. It is because of this man that my children still have a father in their lives.
    So... Mark is enjoying a quiet evening before his bath and wound care, harassing his friends on facebook and preparing for a fun day at the zoo tomorrow with the kiddos. It's amazing how such a close brush with death and a completely new lease on life has him appreciating all of the special moments. Ariel's ballet class had an observation day today, and I've never seem him smile with so much enthusiasm as I have when he watches her dance. Before the injuries, he may have been indifferent about attending an observation day, but now he aggresively manages his busy medical schedule to ensure that he attends every possible lesson- even though we usually have to sit outside the studio. Just watching her through the glass doors seems to bring him peace and joy. He has also been diligent about the boys' guitar lessons, but we are unhappy with their teacher and are looking for another instructor. I am simply grateful that my children and their father are embracing whatever silver linings they can create out of our cloudy situation. In many ways, Mark's injuries, limitations and newfound awarenesses have provided him with more clarity and capacity for love than he previously had.
     I hope to be able to blog more frequently. :) I've been wanting to just get so many thoughts and feelings out, but am either too exhausted, busy or the internet is acting up in our barracks. :)

our post blast

     The early days after his injuries are somewhat of a blur to me. I wish that I had written down more of my thoughts and feelings, but I was consumed with organizing information from all of the doctors and surgeons and everything else that was so critical. We were fortunate to be in good company up here, though. Several other bomb techs came to visit Mark in CCU and one of his brothers from his unit had been injured about a month prior, so his lovely wife provided this pillar of support to my family. Melissa and I had never actually met before our husbands were injured, but I could not ask for a better wife partner to share this journey with. We do not get to see each other much now either, as our husbands have different injuries and limitations, and we are busy with our own recoveries, but I will never forget the love and kindness that she so generously showed us in the beginning. In such close quarters, families get to know eachother and places like the Navy Lodge laundry room become impromptu therapy sessions. Several of the other families have made incredible differences in our own experience.
      Most of Mark's stay in the CCU was spent in a drug induced state of delirium. Still, every night of Hannukah I brought the kids to light the electric menorah and sing the blessings. Hannukah is a time of miracles, of light. I could think of no better interpretation for our situation. Mark could have been injured at any time, but performing the Hannukah rituals reassured us that we would always have G-d and light in our lives- as long as we made the effort to ignite the fire and delight in it's warmth. Much like lighting the menorah, we fueled our hearts with prayer and hope. I spent countless hours into the night just standing next to his silent struggle, missing my children. My mother abruptly left her job to help care for my little ones so that I would not be stretched completely thin. They would wait patiently in the room, getting their wiggles out only in brief bursts and usually by running up and down the hotel hall ways.
     The Navy Lodge would be our home for the next three months. A fastidious person, I bought shelves and organizational tools to accomodate our large family and ensure that we could have a neat and functional space. It was so challenging because the housekeepers were all extremely rude and would bang on the door, but refuse to clean if there were anything on the beds or floor... We would scramble about, getting their school work piled up, toys shoved away, pajamas placed in baskets so that they could do a half hearted cleaning and we could resume our lessons. I asked the front desk if we could arrange a time so that we could not be interrupted during lessons and so that then maids did not have to roll their eyes at us and mutter, making us feel uncomfortable and invaded. The clerk said that this was not possible, so for about a month we continued with this awful routine. It seemed that even the slightest amount of compassion was too much for the staff- we were not guests, simply an imposition. I know that an unfriendly hotel is really not significant, but this was supposed to be our home during our toughest time, and the pain was monumental.
    Our living situation became drastically worse after a disagreement with one of the managers over some complimentary paper cups.  Isaac's food allergies prevent us from buying hospital food and we do not eat fast food (he is also allergic to sesame seeds), so I was cooking three meals a day in the hotel and packing food in paper cups from the complimentary coffee station in the lobby to bring to my husband's room. My seven year old went downstairs to retrieve four cups to pack dinner in and returned to our room empty handed with tears streaming down his face. Bottom lip out, he stammered that the manager yelled at him and told him that the coffee cups were only for guests. When Marky explained that his mommy needed them to pack dinner, the manager forced him to return the cups and raised his voice again. This poor kid- already in a state of extreme stress. I called the manager and he gave me the same answer- that the cups were only for guests. I assured him that the four of us were guests and that we were only using four cups that day. One a piece. He maintained that the cups were only for beverages, so dinner was not acceptable, though we could use them for hot chocolate. I was in tears. This began my step father's quest to become intimately familiar with the regional manager and rules regarding paper cups. I did not see that hotel manager after that, though the staff became noticeably ruder and even less welcoming. We did get to coordinate room cleaning times after this, which did help us a bit. The other hotel manager must have taken it upon herself to uphold a grudge against us and took my daughter's stuffed fish, Sushi, that she has had since she was a newborn. Her comfort item went missing for about two weeks until a different staff member saw it in one of the office desks. I had begged the housekeepers, staff, managers to please help us find Sushi, but instead the fish ended up tucked in the manager's desk for days. Ariel was devastated- she did not sleep- so many tears were shed because of cruelty. That manager began targeting us- constantly finding fault with bogus complaints like we were late returning a dvd (the paper I signed said it had a daily charge, meaning we would pay  by the day and that there was not a deadline). She began spying on me in the fitness room- a very small room with tiny windows. She would have to make an effort to watch me and learn my habits. We would be minding our own business when she began rapping on the door, demanding that my kids not sit on the exercise bike. Just sit there- not use it... Isaac was simply sitting on it playing his ipod. We were all quiet and well behaved. The rules in the room stated that children must be supervised, not that they can not use the equiptment. After the door closed, I told the kids that I know it is annoying, but that we just need to roll with it. Soon after, the deputy of the base was looking for me- the manager had lied and said that I called her a motherfu%^er... something I would never do- I've never been in a fight in my life- nor behaved in this confrontative manner. She was also angry that I needed my room cleaned at the same time every day- to avoid the issues with the maids and to allow the kids to finish their school work. The deputy was going to force me to meet with the manager, but I presented my side to the regional manager of the Navy Lodges in our area, who agreed that the manager was out of line and was harassing me. Things around the lodge became much less painful- I believe that the regional manager upheld her position and commitment to treat guests with respect. It was so obnoxious, I could not believe the amount of effort and energy the manager spent trying to make our lives miserable- we were quiet guests, mostly at the hospital and never raised an issue- until the whole paper cups drama. For three months, we found ourselves surrounded by negativity and discomfort.
     The hospital, however, was a much different environment. Of course we were grateful for the world class care and the state of the art equiptment, but nothing made as big of an impact as the nurses. After Mark was stable enough to leave the CCU, he was moved to "4 center". Like any adjustment, we were anxious and unprepared, but the nurses quickly became a vital source of support. Americans lovingly shower us with their gratitude and praise my husband as a hero- which is wonderful and he is, but we often overlook the nurses. These men and women give their hearts and souls to the wounded warriors and the families. My children miss the staff, and we look forward to seeing them when Mark has surgeries that require an inpatient stay. I consider these people family- they gave my husband comfort and security- they not only treated his wounds and monitored his vitals, they enveloped my entire family with warmth and love. The staff on four center will probably never be able to comprehend the extent of their actions, but I really would love to find some way to convey our gratitude. As Mark's body healed, we could see the spark of mischief dance around in his eyes. It was heart warming to watch him harassing the nurses, pressing the call button with his arm nub just to yell "PENIS!" at the nurses. I have videos of him dancing around (as soon as he was able- took over a month) in his backless gown, so that the nurses would throw dollar bills at him and encourage his bad behavior. They helped bring my husband back to life. Four center is not some sterile, cold hospital ward- for us, it is a happy place. Mark absolutely took advantage of his inpatient status and ignored all military protocals- his beard was horrifyingly unkempt and his hair resembled Einsteins. The brain injury has changed his personality in many ways, and definitely reduced any filters that he had- so it could sometimes be amusing to watch him communicate, perhaps too openly, with senior officers. Maybe he just doesn't care about pomp and circumstance anymore. He gave his arms, his eye, some of his mental capacity, and certainly all of his comfort for the greater good of the corps and the world. I love how comfortable he became with the nurses- it was not uncommon for the children and I to make our way up to the ward after a full day of schooling, cooking, cleaning, etc to find Mark in his wheel chair, distracting the nurses and enjoying the fabulous company. We were so lucky to be put in that ward. They offered us so much compassion and support through all of the painful tests and axiety ridden waiting periods for results- results that always seemed to be full of bad news.
     Mark's discharge to outpatient status came mid March. Our family would leave the Navy Lodge (woo hoo!!!!) and move to building 62- a family barracks for wounded warriors. By this time, my children- who once shrinked in fear at the sight of amputees- are so accustomed to our new lifestyle that they enjoy going with their father to his physical therapy sessions and are comfortable around all of our new friends. Over the course of our stay, we have- with heavy  hearts- welcomed more of the EOD family into our new home. It is never easy to receive another injured tech, to watch his family begin their own tortuous roller coaster into recovery, but we were so blessed to find companionship with another brave EOD tech who sustained intense and multiple amputations, brain and eye injuries. This tech, though I did not know him prior, has touched me so deeply. His father, often humorously, found his way into our hearts and became a comforting staple in our new environment. His mother and I have not really communicated more than just in passing, but the love and strength are almost palpable from her- watching that family in their own journey has provided me with strength and insight into ours. I can only imagine the maternal agony of watching your child suffer- I have been through so much with Isaac and his health issues, and I believe that being a wife in our situation is challenging, but that the dynamics of being a mother to a wounded warrior must be just that much more gut wrenching.
     Our days are very hectic now. Mark has physical and a couple different types of occupational therapy each day, in addition to his surgeries, follow up appointments and a plethora of other obligations. I am responsible not only for raising my three beautiful children, but homeschooling, maintaining our new (very small- must stay very organized) home, getting Mark to his appointments, managing his mind boggling regimen of medications (at one point I was giving him shots twice a day), performing his wound care, bathing him, feeding him, etc. I have managed to take care of myself, too- believe it or not :) I still run about 4-6 miles a day and lift weights. We bought a treadmill so that I never have to miss a run (I've been addicted for over a decade- ran three miles the day I delivered my third child- and she was two weeks late!) We are making building 62 work for us, and are grateful for the opportunity to live right on the hospital campus. It did not start off easily, though. Our recovery care coordinator (the lady who was so mean about me not using childcare and who did not help us much in the beginning) had promised us that our new room would be cleaned so that it was safe for Isaac. When we moved in, I opened the silverware drawer to find a knife coated in peanut butter, red sauce on a pan and fork, food on a cutting board, pubic hairs (ew, ew, ew) in the bed with obvious stains, and my five year old found a pill that was not ours. It would have been much worse if my three year old found it! I was so upset that the coordinator had let us down so monumentally, and sent her a text letting her know that I was livid- the harshest word that I used was "freaking". Isaac had already started hiving, which I shared with her- and rather than respond with an apology or inquire about Isaac's health, she showed the texts to the operations officer, a Major, who called me in for a meeting with the deputy and chastised me for sending her the text. He also condescendingly told me that I'd better not expect an all inclusive hotel and that his only concern was for my husband- that the family is pretty inconsequential. Dumbfounded and emotional, I went back to my room and cried. It was so hard to watch Isaac terrified for his life in his new home (moved around, yet again during our crisis situation) as I furiously cleaned the apartment to ensure that there was no more peanut butter or nuts inside. With the new knowledge that our family was unimportant, I began reaching out to other families, only to learn that my experience was not that unexpected. I did write a letter to the commanding officer who assured me that he does care about us, but we never received any type of apology or anything from the Major. I suppose it's important to be aware that we are cared about by many, but to many others we are simply a career opportunity.
      ......And so ends another day in building 62. We were able to enjoy a day at the mall, buying shoes for my sister's wedding and letting the kids play in the mall play area. Mark and I got to sit next to eachother and sip coffee (his through a straw- his mouth is still very damaged... not sure if I had mentioned that his teeth were severely injured and his jaw was wired shut and repaired with big metal plates) and relish the sights and sounds of our kids being rambunctious. Tomorrow, we check him back into inpatient (he was out on a weekend pass after a major surgery on April 23 which revealed his left arm is horribly damaged and the paralysis is permanent) and begin the grind of a regular week. Every time I begin to feel overwhelmed (it's almost 11 pm and I still have to go out and run, clean the kitchen, give Mark a bath, brush his teeth, do his wound care, etc) I simply remember that we are blessed to be here. I could've had to witness his name being added to the EOD memorial wall as so many other families have had to endure, but today I got to rub his neck and cut up his food. I had the privelege of making him banana custard (ew, I know- but he likes it) and laughing together over the antics of our wild children. I know tomorrow will bring it's own set of challenges, but I'm excited to take those on. :)

    

Long overdue, but finally getting started

   The past (almost) five months have been a busy conglomeration of stress, pain, intensity, love, hope and insight. I have toyed with the idea of creating a blog and have only finally found a few moments of free time to actually do it. I hope that it will bring my family an outlet for our emotions and some peace as we look back on earlier days. I suppose I will simply begin writing.......
         My husband loves his job. I remember when he was in school to become an EOD tech (explosive ordinance disposal or bomb squad), he would mumble and groan about "det cord" and blasting caps in his sleep. He smelled like explosives most of the time and he finally found his niche in this world. The larger Marine Corps is riddled with pretentious rank concerned compensators and meaningless customs that seem to reinforce the higher ranking members' desire to assert power and control, but the EOD community is different; all members of EOD share an inpenetrable bond. Mark loved this and wholly embraced the challenging lifestyle that these men and women so proudly endure.
      Our story begins in early October of 2011. My husband, Mark, was settling into his new home in Afghanistan- a system of tents without running water or electricity. Because he needed to relay sensitive information to the EOD command, he had access to a power source, computer and the internet. This allowed us to communicate and for our children to be reassured every time they saw their father's newly mustached face smiling across the world. We were understandably anxious about this dangerous deployment, but we had faith that Mark's training and diligence were sufficient and that he would return home unscathed. The children and I filled our days with playground romps, stroller runs, and bated breath for the next time that we would hear from Daddy. We worked hard in our homeschool lessons, enjoyed testing new recipes, and making some changes around the house- the usual things that our family does during deployments. The deployment was off to a good start, we had become friends with a couple of the other EOD families and were steadily ticking off the days until we would be reunited.
      December 9th began as any ordinary Friday. I groggily found my way into the kitchen and began dissolving yeast in warm water to prepare my Challah for the Sabbath. As I was kneading my dough I brushed away some disturbing thoughts about Mark's safety. It is always hard to swallow the worries that arise when a spouse is deployed, but it is not uncommon and I went about my routine. The kids woke up shortly after and I prepared breakfast and organized their lessons for the morning. Our day continued as usual and I remember that we were happily enjoying reggae music and dancing around after our lessons. It was sultry outside- still warm and very inviting. By late afternoon I was ready for our daily run and I pulled the stroller out of the garage and got my shoes out. Even though I had heard from Mark just a day earlier, I had a nagging feeling that we were out of touch, and I typed him a quick note as I laced my running shoes and briefly stretched my legs. I typed that I was worried about him and that I needed to hear from him.
      The phone rang- again. I had spent the past few days researching graduate schools and was being almost bombarded by admissions counselors' phone calls. I almost did not answer the phone and when I did, the caller simply asked if Sara Burleson was there. Suspicious that this was yet another college, I asked who was calling. We went back and forth with this until the caller bluntly stated that he was from Headquarters Marine Corps and that it was imperative that he speak with Mrs. Sara Burleson. A wave of nausea rippled through me and I weakly asked if my husband was ok. The gentleman on the other end of the line calmly and sedately told me that my husband was seriously injured in an IED explosion today. My kids were coming into the living room, so I opened the front door and went outside. I asked if he was going to live and was told that it was too early to know. My heart was screaming to know more, but I had to keep asking for a moment as I put the phone up, dry heaved, and choked back tears. When I gathered the courage to listen, the caller told me that Mark had lost his right arm at the elbow, suffered severe facial lacerations and was in a coma. He was still in Afghanistan, but being stabilized for transport to Germany and, eventually, Bethesda, Maryland. Marky, my seven year old, was trying to listen from the front door. He kept ignoring me to go inside, and I did not want him to learn about this from a door way, so I had him sit with  me in the driveway. It's strange, but I couldn't believe it was Mark's arm... these guys lose their legs, not their arms. I knew that there had to be a mistake and I demanded that he spell Mark's full name. I wanted his birthdate as well. Finally, I required proof of his social security number... but still... this all felt so surreal. I hardly remember the phone calls to my mother and father and to my in laws. I asked the Marine to assure me that Mark's teammate was safe. I was developing a close relationship with his wife and did not want to tell her about Mark without knowing that her husband was unharmed. Nikki was one of the first people I called, and I am so grateful for her love and support.
     Those who know me well know that I am a talkative and social person. I love my friends and I appreciate phone calls. Normally with any news, I'm on the phone sharing, but I could not bring myself to talk about this new reality. A friend from our synagogue, a man who I suspect is no stranger to what our family was going through, came and sat with my children and me while we waited for my Dad to arrive. The kids' soccer coach also offered his support. I've never been so overwhelmed in my life. Mark got blown up... this was such a foreign and insane concept. As the days went on, Mark was moved from one base to another and finally to Germany where my step father would sit with him and relay my love and reassurances. During this time, we learned that the facial lacerations were very severe and involved burns and many broken facial bones, Mark had large amounts of shrapnel in his left eye (later determined to be blind) and some in his right eye (mostly restored vision). His left shoulder was completely obliterated. The blast threw him back so hard that his brachial plexus was ripped out of the spinal cord and the surrounding structures were just blasted. These injuries have rendered his left arm completely and permanently paralyzed. He also suffered blood clots, shrapnel in his trachea, a broken neck and some other challenges. The drive up to Bethesda from North Carolina was unimaginably long.
      Two EOD techs escorted my family to Mark. The hospital seemed impossibly enormous- overwhelming and intimidating. The scenario was unreal. I felt as though this were a joke- I'd wake up and hear from Mark. When we finally found our way to the CCU (critical care unit), we walked past several rooms before shakily peering into Mark's. Nurses surrounded him, it was bright and busy. The other Marines had to help me put my gown, mask and gloves on. I was shaking and so scared- even from a distance, Mark looked weak and broken. His face was simply gone- replaced by a contortion of swollen pus and blackened crust. His eyes were swollen and the smell... the smell was overpowering even through the mask. Our three kids innocently waited in the family room with my mother. They knew Daddy was inside, but didn't ask to see him. Those children simply offered me support. They held my hand and loved me unconditionally that night. The next several days would require them sacrifice my presence. We are always together, especially because Isaac- my five year old- has severe food allergies. They would have to stay in the unwelcoming hotel room (more on that later) while I spent as much time by Mark's side as possible.
      We would spend three weeks in the CCU. Mark slowly regained the ability to see and would abruptly open his eye and dart it around in fear. I would tell him what all of the machines were. Countless times, I took pictures with my phone and showed him what he was hooked up to. It never seemed to matter, though. Mark was always afraid and it was heart breaking to know that he was reduced to a helpless and terror stricken being. He would not be able to speak for almost the entire three weeks that he was in the CCU. We would communicate during brief episodes of lucidity by toe wiggling or slight nods. When he finally agreed to see the children, I brought them in one at a time. Our friend and fellow EOD wife, Heather was there with us and she brought Marky in first. Marky stood in the door way, trepidation obviously etched into his blue green eyes. He looked up at his father beneath his furrowed brow, shook his head and ran off. Heather comforted him and later brought Isaac in. Isaac has been in life threatening situations before and has had close calls because of his severe food allergies. I believe that he has a mature understanding of the fragility of life. I'll never forget how he matter of factly walked up to his father and put his own young fingers on his father's wrapped up and amputated arm. He solemnly told his father that his he had gotten blown up and that his face was very bad and that his arm was gone, but that he was the same old Daddy and that he loved him very much. Isaac quietly and stoically held Mark's arm. I hope that I never lose sight of what my five year old taught me that day. Ariel, my three year old, took one look and began to cry and needed to leave the room. Slowly, the children would adjust to our new situation, but not without break downs, tears, tantrums, and intense fear.
     Throughout all of this, we were assigned a recovery care coordinator and a Marine liason. Our liason was incredibly kind and emotionally invested in Mark's recovery, but our recovery care coordinator constantly berated me for not accepting free child care (Isaac's food allergies are so severe that he has almost died on numerous occasions from contact or nut ingredients in body lotions and childcare is too dangerous). She is the wife of an officer and embodied many of the stereotypes that went along with that. She seemed more concerned with her Louis Vuitton bags, designer sunglasses and talking about her breast implants than what we were going through, and while she did sometimes offer us information and help, she mostly forgot to do things like set us up with a pediatrician, ensure that we got paid (we did not get our travel money until we had been here for about 50 days) and generally blow off our legitimate needs. It was heartbreaking, but we would soon learn that she was simply an introduction into the dysfunction of this command.
     ......I was unsure of starting a blog, but am already feeling a release in writing. I'm sure that our hectic and crazy schedule will not allow me to write daily, but I have so much more to get out there. Thank you for reading this long post and tuning in for more soon. :)