Caregiver Profiles - the Burlesons - Rebuilding Life and Love After the Bomb

The story begins on the island paradise of Hawaii.  Sara was working in a Dunkin Donuts when Marcus Burleson (known as Mark), who was a Marine stationed in the area, spotted her.  Although he did not drink coffee, he visited frequently, just to get a look at the angel behind the counter. 

On February 20, 2004, Sara became a Marine’s wife.

Sara and Mark, a Staff Sergeant and EOD (Explosive Ordnance Disposal) technician, eventually found themselves at Camp Lejeune in North Carolina with three children.  Marky is 8 years old and has ADHD.  “Stress is very difficult for him,” Sara explained.  Isaac is 6 years old and suffers from a thyroid disease and severe food allergies.  His allergies are so acute that someone using cocoa butter lotion and simply touching him can set off a life threatening reaction.  He also goes into anaphylaxis randomly, with no obvious cause.  He sports a cute little “epi puppy” around his waist at all times.  His epi puppy contains his life saving epipin, and Sara has had to use it no less than three times since their arrival at Walter Reed in December 2011.  The youngest child is a cute little red-headed angel named Ariel.  Ariel is 4 years old and not often seen without her stuffed fish, Sushi (who bears a striking resemblance to Nemo).  Sara has home schooled the children since Marky started school, almost four years ago.  Due to Isaac’s allergies, regular school, and even childcare, is not an option.

Mark left for Afghanistan in October 2011.  “Although this was only his second combat deployment, he has been around the world.  He deactivated bombs in tribal wars, too,” Sara said with a laugh.

On December 9, 2011, Sara had completed her children’s home school lessons and was preparing to go for a run when the phone rang.  Having been receiving constant calls from graduate schools where she was applying, she almost ignored the call.  After a bit of back and forth where neither Sara nor the caller wanted to positively identify themselves, the caller finally admitted that he was from Headquarters Marine Corps.  Sara describes the rest of the call as follows, “A wave of nausea rippled through me, and I weakly asked if my husband was okay. 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. . . 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 . . . as I put the phone up, dry heaved, and choked back tears.”

“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” Sara says, describing the incident and resulting injuries.

It is the left arm that causes Mark the most trouble.  It was essentially “unplugged,” and was a source of constant severe pain and depression.  The arm hangs lifelessly at his side, with no hope of ever working again.    

The children became afraid of their father.  His screams of agony terrified them.  This was no way to live…. For ANY of them.

Mark consulted with a neurosurgeon who advised of a surgery that could have eased much of the pain and suffering caused by the arm, but for whatever reason, Mark’s primary doctor dropped the ball and failed to refer him for what he needed.  This is not the first complaint heard around campus about the Warrior Clinic and the doctors’/nurse practitioners’ lack of compassion, understanding and diligence.  Sara’s anger and anxiety over this rose to a new level when the neurosurgeon advised that patients have committed suicide over the pain caused by this injury.  So, why wasn’t the surgery immediately scheduled?  The doctor at the Warrior Clinic refused to sign the necessary referral forms.

And, instead of referring Mark for the surgery he so desperately needed, the talk was to send him and the family to Tampa, to consult with a polytrauma center that specialized in pain control.  This would cause the children to uproot once again, losing their extra-curricular activities and the new friends they have made, and could not guarantee that Mark would find any sort of relief.

During a consultation, the doctor advised that he did not believe that there had been a complete avulsion (injury where a body part is forcibly detached from the inner structure) of the arm, so the surgery would not be effective.  When questioned by the Burlesons, he commented that there had not been a CT Myelogram, which would reveal the full extent of the injury.  Inasmuch as the test had, in fact, be completed in January 2012 and revealed that the avulsion was complete, it because apparent that this doctor at the Warrior Clinic had not thoroughly reviewed his patient’s notes.  This also poses the question as to why this doctor would not have ordered the test had he honestly believed the test was never done.  Once the facts were pointed out, the surgery was scheduled.

Mark finally received the necessary surgery on July 26 at Johns Hopkins in Baltimore, Maryland.  The six hour surgery removed four vertebrae in his upper back/neck and burned the scar tissue that was on his spinal cord as a result of the initial injury.  It was this scar tissue that they believe was responsible for his pain.  Although the recovery from the surgery has been nothing less than horrific, it is significantly better than the severe nerve pain from which he had suffered since injury.  Additionally, with the rerouting of nerves in his arm, it is hoped that one day he will be able to bend his elbow.

When Mark was injured, Sara, a stay-at-home, full-time Mom who home schooled her three children, was applying to graduate school.  She currently has a Masters in psychology.  The injury caused Sara to uproot their children, take them away from their friends and activities, forgo grad school for the time being, and move the family about 400 miles north.  For three months while Mark was an inpatient, the family lived in a one room hotel room at the Navy Lodge.  With Isaac’s severe food allergies, it was a challenge to cook healthy meals in the make shift, small kitchenette at the hotel.  Due to Isaac’s allergies, eating out has to be a carefully planned event, with full knowledge of the restaurant’s food prep practices.

Currently, the family lives in the two bedroom apartments offered in Building 62, the rehab housing on post.  There is no current time line for the completion of Mark’s rehabilitation and release.  One thing is for certain, now that he has had the surgery to reduce his considerable pain, his rehabilitation will progress faster.

Sara begins her day anywhere between 0630 and 0700.  She manages Mark’s medications, home schools the children, and cooks and cleans.  Mark still has open wounds which require her to be his own personal wound care specialist on a daily basis.

The hardest part of this journey for Sara has been the emotional aspect of their new life and her feeling that there just isn’t enough of her to go around.  Not only does she still have the responsibility for three young children, she now needs to meet almost all of Mark’s needs.  “He really is like a child now,” she commented.  “I try to give the children everything they need, and then I have nothing left.”

Additionally, Sara, who is very close with her family, no longer has the ability to enjoy daily phone calls with her brother.  “We talk when we can.”  It is apparent how much she misses the connection.

Mark has become depressed, not only because of the gravity of his injuries, but because he realizes that he is completely dependent on Sara, and that this is very hard on her.  Mark loved his job as an EOD tech, and he wanted to stay EOD for the length of his career.  Now, he does not know what he will do.  A benefit, though, is that his relationship with his own father has strengthened as a result.  “They are growing closer than ever,” Sara said with a smile.

And the children have had difficulty adjusting, as well, but they are finding their way, possibility better than some of the adults.  When they were exhibiting difficulties, Sara asked them to write a list with her.  The children expressed their anger and resentment of all the attention that Daddy now gets.  One evening, Ariel crawled up into her mother’s arms, crying, and said she missed life before the bomb. 

Additionally, when the children first arrived, they were terrified of the amputees.  Marky refused to use the bathroom in the hospital, because he was afraid of running into an amputee.  Marky could not look at his father’s injuries, at first, and Ariel cried a lot.  Isaac, with his own history of medical difficulties, told Mark that even though he was hurt, he was still the same old Daddy and he loved him very much.  “Children are resilient, but it is still hard,” Sara said.

However, where the children used to see injury and devastation, they now see the amazing warrior, strength, courage.  They show love and compassion where fear used to be.  Ariel has a real crush on one of the amputees and is convinced that someday they will be married.  

Most afternoons, you can find Sara and the children enjoying the day in front of Building 62.  The children run and play with some of the other children, and Sara chats with the wives and mothers.  Sara is rarely seen without her trademark, huge smile.  Life has adjusted, and the children are thriving.  As Ariel sat and played with her little ballerinas, Sara commented, “Ariel just loves her ballet class.”

Such is the life of another wounded warrior caregiver.  It is not only the life of the soldier/marine/airman/sailor that is forever and completely altered.  The wives, mothers, children of the warrior also must adjust to this new normal.  Not only is Sara getting her best friend back, Sara said, “The kids are getting their Daddy back.  And I know their relationship will be better than ever.”

Check out Sara’s blog at:  www.womanbehindthebombtech.blogspot.com

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Tags: EOD, Sara Burleson, caregiver, wounded warrior

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