Testimony

Testimony

SD-DS 2007: vol. 11, number 1, pp. 9-10 INTERNATIONAL MEDICAL JOURNAL ON DOWN SYNDROME 9 Testimony Dr. Alari, a contributor to this publication and...

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SD-DS 2007: vol. 11, number 1, pp. 9-10

INTERNATIONAL MEDICAL JOURNAL ON DOWN SYNDROME

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Testimony Dr. Alari, a contributor to this publication and collaborator of Centre Mèdic Down from its inception, is retiring. Dr. Alari has been kind enough to send in her thoughts about her time working for the Center. Exceptionally, they will be published here, as they are a convincing expression of the philosophy underlying the work of all those who help provide care for people with Down syndrome. Our publication of this article is a token of our gratitude. The editorial board/The editors

My years at the Foundation TIt all began one summer afternoon, about twenty years ago. I was trying to feed an afternoon snack to my daughter Laia – an infant at the time – in her highchair. Since she was refusing to eat, I switched on the TV in order to distract her. The channel was TV31, and I glanced at what was on. It was a talk show, so I thought I would switch to cartoons or music. I strode over to the TV to change channels, but then recognized Josep Maria Espinàs2 and said to myself, «This’ll be interesting, turn up the volume.» He was interviewing a lady who answered his questions in a measured tone, with resolve, with a powerful gaze; she spoke quietly, but with determination. Mr. Espinàs addressed her as Montserrat Trueta. What a coincidence! She was the daughter of the eminent Dr. Trueta3! I had met her father once, when my class at the School of Medicine had asked him to be its «godparent»; I was proud to wear the badge of a member of the «Trueta class»... It looked very much as though my daughter was going to skip her snack altogether! I just listened to that mother discuss the projects she shared with her husband. TV3 helped me locate the headquarters of the Fundació Catalana Síndrome de Down (FCSD). My children laugh at me sometimes, claiming my mind goes off somewhere and I’m losing my memory, but this particular recollection is vivid in my mind. My first meeting with Mrs Trias4 (as I called her) was easy: people of true worth and deep significance are quite approachable and easygoing, and that was how Montserrat welcomed me: naturally and affectionately, though perhaps a bit surprised to have a 1

doctor turn up, out of the blue, and offer to contribute to her project. And so it all began. For a while, I would turn up at the FCSD with my dental mirrors and some of my instruments to check on the oral health of children who were being seen there, but soon enough I discovered that this did not provide adequate conditions, and suggested that the children come to my own practice. This was kept up until the present. There are many things that I have learned over the years. I had no experience dealing with these children – all I had was good intentions. This led me to make a number of mistakes, including some heart-warming ones I will never forget. Let me tell you about something that happened shortly after I began this work. A little girl came on an emergency visit with her father. She was bleeding after a fall, her lip was split and her teeth were broken. She was shaking there, in my dentist’s chair, looking very scared. I, too, was scared, deep down inside: not of her injuries, but of not knowing how to handle the situation. There I was, standing before her, unclear about how to act, afraid of making a mistake and unsure as to how she would react when she saw the syringe of anesthetic in my hand. I approached her gradually, carefully, and when I was standing right beside her, she leapt up onto me, as if she wanted to hit me. I stepped back, instinctively, and received my first major lesson: that little girl wanted to hug and kiss me! Wordlessly, with no

The main Catalan public television channel. A writer, musician and father of a daughter with Down syndrome. His book, El teu nom és Olga, is dedicated to her. 3 Josep Trueta, a famous orthopedic surgeon who was a professor at Oxford University. 4 Montserrat Trueta was married to Ramon Trias Fargas, a politician and economist who drove the approval of the LISMI Act. 2

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INTERNATIONAL MEDICAL JOURNAL ON DOWN SYNDROME

explanation, she had realized that we wanted to help. With her father there, I tried not to give away my mental state, but my eyes were brimming with tears. That event shaped my perceptions. Over time, experience reshaped my attitude, and I learned to be the one to hug the children first, as soon as they walked through the door. I know for a fact that I have received more from this relationship than I have given. The children from the FCSD, many of whom I have watched grow up, have taught me the things that are never taught at medical school. I also managed to develop a rapport with them based on the things that mattered to them; for instance, when my good friend Alain let us know he was about to become an uncle, or when Dídac, who always looked away when I asked him whether he was brushing his teeth properly... finally said Yes. Or sweet Mireia, who accepted everything we had to do to her with complete trust, because she knew we would never harm her. Or Laura, who was so proud of her Chinese little sister. And there’s no point in hiding this fact: the children from the FCSD taught me the importance of keeping up with football – Spanish league and Champion’s League alike – in any walk of life. Sly little Bernat was the one: when we told him he could watch a Barça5 game with his grandfather at the day center for the elderly, he would allow us to inject the anesthetic and extract some teeth, as the orthodontist required, for treatment

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2007: vol. 11, number 1, pp. 9-10

purposes. We were both lucky there, because that was a good year for our team! Thanks to Barça, to Bernat’s mother’s inestimable cooperation, and to our own creative thinking – if I may say so myself – we managed to complete the treatment. Well, that’s all for now. I wanted to say goodbye to all of you by discussing emotionally felt events that are close to my heart. My thanks to all of you. First, to Montserrat and Katy (the director of the FCSD) for the trust they have always placed in me, from the start. I hope I have deserved it. I want to thank my colleagues working in other specialties, with whom I have shared meetings and perspectives. Centre Mèdic Down has grown under our joint gaze. I hope I haven’t let them down. Although this is the end of a certain period in my life, my heart will remain with the FCSD. Farewell! Eugenia Alari

FC Barcelona, Barcelona’s major football club.

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Note: Please photocopy this form and fax it to +34 - 932 157 699 o mail it to FCSD. Thank you. Privacy statement: In compliance with Spain's Data Protection Act ("Ley Orgánica de Protección de Datos 15/1999"), dated 13 December 1999, you are hereby informed that the information you provide will be collected in a digital file owned by Fundació Catalana Síndrome de Down. The information you provide will be kept confidential at all times, and will be processed with the sole and exclusive aim of sending you information regarding the FCSD's activities for dissemination and publication purposes. We will not, under any circumstances, sell or rent your information to third parties. You may exercise your right to access, rectify, delete or challenge your information by writing to us at: Fundació Catalana Síndrome de Down, C/ Comte Borrell 201203 Entl., E-08029 Barcelona.