The Warrior Princess Behind The Lion King

Every mom is proud of her child when he or she is part of a school performance; whether it is a music show, a dance show, or a school play. Along the years, I’ve seen Lynn perform on stage during many occasions. It all started with her first nursery graduation, kindergarten graduation, the end of year school play, several ballet shows, and music shows. I’ve always been that proud mom who is crying tears of joy behind the camera. I loved seeing her talents blossom year after year. She never had problems performing in front of a small or a big crowd; in fact she was a natural and owned the stage every single time.

This year was a bit different. Towards the end of the first school term, Lynn started having her EM symptoms. Not a single doctor in Dubai was able to diagnose her; EM being the rare condition it is. So we set on our journey to Canada and the States to find a doctor who is familiar with EM. Flying from Dubai to Canada on a nonstop flight would take 14 hours. However, with the swelling in Lynn’s feet and the continuous flaring, I doubted she would be able to handle such a long nonstop trip. So our flight to Canada took 24 hours and a half, in total with the lay over time. It was rather a very wearisome trip. We arrived to Canada, just before Christmas, and we stayed with my parents in Toronto. I was hoping that being with family would help distract Lynn from her pain. For weeks, we waited for replies for referral to see any pediatric neurologists familiar with EM. I had no idea that being on the waiting list would mean Christmas and New Year would pass with no replies. The cold weather in Toronto has suited Lynn, and her flares were less severe than before. The second school term was about to begin and I wasn’t going to return to Dubai without a diagnosis or a treatment plan. International patients often have to wait long to get a referral. I wasn’t ready to let EM win yet, so a decision was made, Lynn would continue her school year in Canada while waiting for a referral.

Lynn joined a private Montessori school, and the administration and staff were informed of her health condition. The school campus was small compared to her school in Dubai; there were no stairs or long hallways and that made it easier for her to move around without the need of a wheel chair. The school made it easy for her to call me during the day whenever she flared, and she was allowed to rest outside the class and be exempt from doing gym. The daily struggle was evident and she missed many days of school and worked from home. March break was one week around the corner and we still hadn’t heard from any hospital. Lynn had passed the second term with remarkably high grades despite her struggle, but she was getting physically weaker by the day. I prayed hard, I prayed bitterly, I prayed heart brokenly, I prayed while pleading and begging. My prayers were answered on the 21st of March, after five months of waiting. Mass General Hospital in Boston, replied and Lynn got an appointment with a pediatric neurologist familiar with EM. We flew from Toronto to Boston, and Lynn’s EM was confirmed. The doctor explained all there is to explain about EM and made sure we understood that there was no cure for this rare condition; that the treatment would be by trial and error and entails many side effects. Lynn understood it all too well for her age. Her hopes of any cure were crushed, but her determination to be back to school grew stronger. She wanted to face and fight EM her way, among  her new friends and new teachers. She wanted to hold on to being a normal kid for as long as she could.

We decided that Lynn should finish her third grade in Toronto. It hadn’t become any easier after the diagnosis, and Lynn’s determination was tested daily. Her activity level has gone down to zero. Her diet was so limited and her sleep was constantly interrupted. However, she’s the warrior princess who decided to fight EM by auditioning for the end of year school play. She was excited yet skeptical. I encouraged her to audition because I believed it would do her well psychologically. Imagine my surprise when one day she returned from school to inform me that she nailed the lead role in The Lion King. She never told me she auditioned for the lead role! Apparently, she auditioned for more than one role, because she felt the experience of it would be fun by itself. She got the role of Simba and she was ecstatic with joy.

The weeks passed by and the warmer weather and the pressure of the rehearsals were taking their toll on Lynn. Her flares were recurrent and daily. Even during flares, she rehearsed her lines in bed . She memorized her part and those pf her friends all so quickly. Four days before the play, she had a very bad flare that affected her throat and she lost her voice. I did all that I could to keep her spirit high, but her anxiety level was higher. Thankfully, her voice recovered in time for the play.

Last night was the big night! Both the kids and teachers were anxious. The teachers worked so hard and wanted their students to show their best performance to their parents. Some kids were anxious about forgetting their lines, others were worried their voices were not loud enough. Lynn was worried because of her flares. I was allowed to stay during the final rehearsal because Lynn was flaring badly all day long; her hands were burning and the same applied to her feet and ears. Lynn held on to ice packs to cool her hands, and I helped raise her feet high off the ground, in between acts. She was in pain, but she suck it up and went on stage. I held the camera and recorded the whole play. I fought many tears during the play; tears of joy, pride and pain. The audience awed and applauded Lynn several times. I kept a big smile, for my daughter to see, while tears of joy ran down my cheeks. I was so proud to see her perform so sincerely, and to hear strangers comment on her natural talent, but I was also aching for her pain. Only my eyes would notice how she held her hands in pain during some singing scenes, and how she jumped off her feet behind the curtains because the pain in her feet was unbearable. She also came off stage during the intermission to take her remedy to help go through with the play. She didn’t forget a single word, and she hid her pain so well that her performance was truly impeccable.

Once again another show performance, and I’m a proud mama as always, only this time for different reasons. I’m proud that my daughter is such a strong fighter. I’m proud she let her determination beat her pain. I’m proud she pushed beyond her limits and excelled. I’m proud that my warrior princess was Simba of The Lion King.

This post is published at The Mighty and available at the following link:

http://themighty.com/2016/05/when-my-daughter-with-erythromelalgia-performed-in-the-lion-king/

 

 

 

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4 thoughts on “The Warrior Princess Behind The Lion King

  1. Hello I was moved to read your baby ’cause I live your own drama. My 7 year old son and ‘ born with EM but he and ‘ a true warrior and never stops . He loves to motocross and every weekend he and I are in the cross tracks . She suffers a lot and sometimes the pain ‘so strong that he can not even speak, but he’ s a fighter and never gives up . As soon as the pain subsides a bit him again . Our children are the true warriors , we should learn from them !!!!!!!

    Liked by 1 person

  2. Im proud of u lynno our worrior princess for ur big effort and proud of the great mom in the whole world since lynn was born till now u didn’t do anything in ur life except looking around for Lynn Ziad Ghaziri u were a great mom growing up lynn till now supporting her in her fight to EM proud of u Youmna Oraybi Ghaziri
    U make me cry a lot while reading this love u and lynn so so so much u mean everything in this world to me keep on worriors mwah

    Liked by 1 person

    1. I’m an EM victim since age 50, and I identified with what you said about the heat emanating from your darling that could be felt by you. I used to be able to raise the house thermostat about 5 feet from me, two or three degrees just watching TV! This is truly a horrible disease and my heart breaks for the children who have their futures limited by this incurable malady. We have come a long way since the www;erythromelalgia.org website began some 17 years ago, and there is now a lot of EM literature, research, anecdotal sharing on EM@yahoogroups.com, banding together with TEA (The Erythromelalgia Association) and more to come. We are a group who refuses to just lie about and “take it.” We are always making new suggestions for coping with the pain, and the stories of others are so important. Thank you very much for joining in the sharing with Lynn’s heartfelt story and all the lovely pictures of this little angel “Lion King,” and I hope she can connect with other children with EM also.

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