Acute Care Mission

Meriam

THE DANCER
By Kristen Kibbee
In memory of Maryam

When I got the call to be a host family for Children in Need, I wasn't quite sure what to expect.  The only information that I had was that my charges would be an Iraqi mom and her 2 year old child with a tumor on her head.  So many questions - would I be able to communicate with them, how would I react to a sick child, would this family need more than I was capable of giving?  As I met them at the airport, my apprehension disappeared.  What I saw was a travel worn mother, Rasha, and a very sick little girl, Maryam.  More importantly, though, was that I saw two people:  two people, not a story, not something happening in a different world.  We headed over to the hospital where Maryam was evaluated for intake.  The impact of the situation became clear to me immediately.  As Maryam's bandages were removed, the severity of her disease was apparent.  Her disfigurement was so striking that it was hard to watch, but impossible to look away.  I was also so instantly impressed by Rasha's roles as caregiver and advocate to her child.  Despite the language barrier, Rasha communicated her total knowledge of her daughter's needs.  It was obvious that the initial exam was painful for Maryam, but Rasha was able to guide the doctors through the procedure so that it was the best that it could be for Maryam.  During a particularly difficult part of the exam, I saw the first of the amazing connection that Mother and Daughter shared.  Maryam was crying with pain, and Rasha locked eyes with her daughter, pulled out her cell phone, and played a recording of their favorite Iraqi song.  What followed was to become Maryam's signature move - she calmed down immediately, put her little arms up, began nodding her head and fluttering those tiny hands to the music - she danced!  When Maryam danced, her disfigurement melted away from your vision and left only the beautiful young child that she was.  And that was the essence of Maryam....in a situation where most would focus on the dominating pain, that little girl was able to find a way to experience joy.

During the next weeks and months, life would be a roller coaster for Maryam and Rasha.  Between the glimpses of what could be and the trial of what was, hope lingered in Maryam's happier times.  The long days in the clinic were trying for everyone.  During the painful dressing changes and blood draws, we would sit in the exam room for hours.  Inevitably, Rasha would pull out her phone during the tougher moments, and we would all be taken by the little girl who danced.  Sometime during the endless cycle of clinic visits, inpatient chemo treatments, and devastating surgeries, Maryam found her favorite dance partner in Elmo.  It was really something to watch Maryam and Elmo dance together.  As all great dance partners should be, Elmo was the perfect gentleman, occupying his little mate through the roughest of times.  When Maryam was too sick to play after her surgeries, Elmo would entertain her on TV.  On most days, though, Maryam loved to pick up her dancing Elmo doll, play his music and have a regular old dance party.

In the spring of this year, after two difficult surgeries, many rounds of chemo, and more medical treatment than any two year old should have to endure, the tumor started winning the battle, growing at an alarming rate.  It disfigured her physical appearance so dramatically that the doctors said that they had never seen anything like it.  The rate of growth was unbelievable, as it consumed more of her precious face with each visit I made.  Every time I headed to the hospital, it would take the entire trip to brace myself for what I would find.  Unbelievably, though, Maryam still found a way to dance and remind us that she was still our beautiful little girl.  One day, as we were blowing bubbles together, the tumor started a major bleed.  I was asked to step out of the room while the doctors gave emergency care.  I watched anxiously through the glass wall that separated us, and saw her little eye peek out at me.  From between the doctors and nurses, Maryam caught eyes with me and waved her little hand, asking me to come back and blow more bubbles!  Our little dancer knew how to dance even when we couldn't hear the music.

Maryam would recover that day, but her condition would deteriorate quickly.  A short time later, I headed to the hospital for another visit.  I remembered how much she enjoyed the bubbles and I had really wracked my brain to think of more toys to amuse her in her fragile condition.  I knew I had a sure thing with the Elmo finger puppet that I had in my bag.  As I walked into her room, I saw that the tumor had cruelly consumed her one good eye.  She lay calmly in her bed with Rasha at her side.  I quietly placed my useless bag in a corner and took my place on the other side of the bed.

The inevitable call came a few days later, early on a Saturday morning. Maryam had passed away during the night.   The battle was too great even for such a gallant fighter.  I truly believe that Maryam was able to connect more with the true joys of each moment of life in her few short years than most people ever do in a hundred years of  living.  For me, she will always dance in my heart. Our little eternal dancer showed me some dance steps that I would have never known, and my promise to her is that I will try to be a great dance teacher to those around me in her honor.  During quiet moments I can still hear her giggle, still see her dance.  I try not to think about what could have been, but instead realize that the short time we had with her was a precious gift.   I know that Maryam has once again found a way to dance in her new home.  After all, heaven has a great dance floor and God is a pretty cool dance partner.  Dance on, little angel, dance on!
  

Specific Cases

• Meriam
• Safa
• Mohammed