A love story

Una Historia de amor 

Rossana Betancur Escobar

Translated into English by Mayara Floss

Imagene: La pareja.

Con Felipe nos conocimos en el barrio. En un cumpleaños de su hermana.El es 3 años mayor que yo.Nos gustamos apenas nos miramos…empezamos a pololear  a escondidas.

Yo tenia 16 años y el 19 .Pasaron dos años y quedé embarazada….yo me di cuenta que queria ser mamá, pero que era como una ilusión de niña-mujer,de sentir que algo nos unía…Poco a poco  mi guatita creció y mi mamá empezó a preguntarme cosas, sobre mi regla, que por que estaba tan palida…yo traté al máximo de que no supiera, hasta que me puso entre la espada y la pared…no me quedó mas que contarle.Asi que empecé mis controles,a llevar a Felipe a la casa…el mas duro en aceptar  fue mi papá…yo era su regalona..dijo algo asi como que la vida iba a ser mas dura …yo no le hice caso y seguí adelante con la ilusión de tener a mi hijita…ahora ya sabíamos que era niñita…yo me la imaginaba jugando,saliendo al parque , haciéndolo que ella la hiciera feliz,en fin.

Llegó el momento del parto y nos fuimos al hospital…debería haber sido  un momento de alegría..pero no no fue asi…un trabajo de parto largo..una bandita en la guata que mostraba los latidos cada vez  mas lentos de su corazón..la matrona corriendo a avisar el doctor…pasaron las horas mas largas de mi vida…cesárea de urgencia…Felipe y yo nos mirábamos,cual de los dos más asustados….se acercó el doctor de los recién nacidos y nos dice que nuestra hijita viene con un problema…que su cerebro no recibió el suficiente oxigeno…que está como dormida…que necesita una maquina para que no se le olvide respirar…no sabria describir que sentí…mezcla de miedo, rabia,dolor ….pero pensaba…tranquila está viva….

Pasaron los días, y quedó así…como una plantita, conectada a maquinas…que gracias a ella podía seguir viviendo…pasaron muchos meses…tenia una sonda para alimentarse, un tubito en la traquea para respirar,un ventilador , lmonitorizada las 24 horas.Todo estos nombres raros  los aprendí con el tiempo, gracias a la enfermera que la cuidaba , que antes de cualquier procedimiento me contaba lo que le iban a hacer.

Mis padres dejaron de estar ariscos conmigo…hablamos mucho…lloré…me abrazaron…con mi madre nos turnábamos para cuidarla…

Habían pasado varios meses….Felipe no tenia un trabajo estable…empezaron las discusiones..yo estaba tiempo completo para mi hija…no quería pensar en ninguna otra cosa…cuando el decidió alejarse…estuve de acuerdo…eso generó rechazo hacia el de mis padres..pero yo entendí su situación…demasiado jóvenes para comprender lo que estaba pasando.

Mi hija no habla…no se ríe…pero yo se lo que le pasa…ya creo que es mejor irnos a casa.

Nos envían gente del hospital para seguir ayudándonos…algunas cosas las manejo yo mejor que ellos…pero están dispuestos a ayudarme y aprender , cuando tienen dudas me lo dicen , se comunican con su pediatra o los médicos de la unidad…yo lo agradezco….me empiezo a reconciliar con el hospital…no es que yo crea que hay algo malo ahí…solo que cruzar su umbral,vienen todos los recuerdos a mi mente, me falta el aire, empiezo a sudar…

Ya a un año de nacida..me dicen algo sorprendente….ya no hay mas insumos…empieza a fallar el viejo ventilador mecanico….viejo porque no tiene repuestos..pero mi hija sigue viva!!!...sigo peleando con quien sea y donde sea…voy donde el señor donde mandan a mantención las maquinas…invento repuestos…reciclo…vuelve a funcionar….voy a la muni…me dan ayuda económica…estoy agresiva  con medio mundo,incluso en la casa…..me siento angustiada….mi hija está mas inquieta,las maquinas pitean …comprendo que no puedo seguir asi…me visita la kinesologa del hospital….habla con la doctora y ella le pide que me visite la psicóloga….tengo rabia…he luchado tanto y siento que todos me miran diciendo… para que?....como que para qué!!!.....es mi hija …ella me necesita y seguiré luchando por ella…se que sus días son pocos ,pero mientras ella respire, manifieste su dolor, cambien los parámetros de su maquina…..aqui voy a estar….

Ha pasado el tiempo…estoy asumiendo un poco mas mi vida…volví a estudiar…descanso algunas horas….cuando me visitan me traen los insumos, eso es un viaje menos  y un día mas con mi hija...cuando tengo alguna duda los llamo y me siento apoyada…hay una paramédico que se sentó un dia conmigo a conversar y me hizo tan bien.

Hace unas semanas vino Felipe, hablamos , nos perdonamos…le hablamos a la hija…que la amábamos mucho y que aceptábamos su destino….estuvo muchas semanas muy bien..si hasta a un cumpleaños la llevamos…. Con ventilador y todo!.

…Nuestra hija falleció hace unos días…ella fue el regalo mas hermoso que me dio la vida.... pudimos darle la mejor vida que su condición permitió, en su casa, con su gente…superando una  sobrevida , que nadie imaginó!

Estoy embarazada…me fui a vivir con Felipe…tenemos dificultades..como cualquier pareja…pero estamos viviendo nuestro amor con nuevas energias .Sabemos que nuestra segunda hija será única y que no viene a reempalzar a nadie y que nuestra primera hija vino a enseñarnos muchísimas cosas que esperamos poder practicar…

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A love story 

Rossana Betancur Escobar

Image: The couple.

I met Felipe in the neighbourhood on his sister's birthday. He was 3 years older than me. We just started to look at each other. We started sneaking around.

I was 16 years old and he was 19. Two years passed and I became pregnant. I realized that I wanted to be a mom, but it was like an illusion of girl-woman, to feel that we have something in common. Little by little my belly grew and my mom started to ask questions; about my periods, why I was so pale; I tried to show that I did not know nothing until she put me between the “sword and the wall”. I had nothing more to tell her. So I started my rituals; brought Felipe home. The hardest to accept this was my dad. I was my father's favourite. He said something like life was going to be harder. But I did not pay attention and I went ahead with the illusion of having my little girl. At that point we already knew that it would be a little girl. I imagined her playing, going to the park and making her happy, in any way.

It was time for the delivery and we went to the hospital. It should have been a moment of joy, but it was not like that; a long labor, something around my belly showed a slower heartbeat and the midwife ran to warn the doctor. The longest hours of my life passed. I needed an emergency cesarean. Felipe and I were looking at each other. I did not know which of us was more frightened. The paediatrician approached and told us that our little girl came with a problem, that her brain did not receive enough oxygen, that she is asleep and needs machines to not forget to breath. I do not know how to describe what I felt, a mixture of fear, anger and pain but I thought to relax as she was alive.

The days passed and she was like this- a little plant connected to machines. Thanks to it  she could continue to live. Many months passed; she had a tube to feed, a tube in the windpipe, a ventilator and monitored 24 hours. All these strange names I learnt over time, thanks to the nurse who cared for her, who before any procedure told me what they were going to do.

My parents stopped being angry with me and we talked a lot. I cried and they hugged me. With my mother we took turns taking care of her. 

It had been several months now. Felipe did not have a stable job and the discussions began. I was full time for my daughter and I did not want to think about anything else. When he decided to leave I agreed but that generated a rejection from my parents. But I understood his situation, we were too young to understand what was going on.

My daughter did not make any sound, she did not laugh but I knew what happened to her and though it was better to go home.They sent people from the hospital to continue helping us; some things I managed better than them. My parents were willing to help me learn, when they had doubts they told me, they communicated with her paediatrician or the doctors of the unit. I appreciated it and I began to reconcile with the hospital, not that I believed there was something wrong there, it just crossed the threshold; all the memories came to my mind, I felt I did not have air, I started to sweat ...





Already a year after her birth and they said something surprising; there were no more supplies, the old mechanical ventilator started to fail because it had no spare parts but my daughter was still alive!!! I continued to fight. I went to the lord, where they sent maintenance to the machines, I invented spare parts, I recycled and it worked again. I went to the major, they gave me financial help. I was aggressive with half the world, even in the house I felt distressed. My daughter was more restless and the machines made loads of sounds. I understood that I could not keep going like that. I visited the physiotherapist of the hospital and I talked to the doctor and she asked me to visit the psychologist. I was angry. I had fought so much and I felt that everyone was looking at me saying fighting for what? .... what!!! ..... She was my daughter, she needed me and I would continue to fight for her. I knew that her days were few, but while she breathed, manifested her pain and changed the parameters of her machine, here I would be ....

Time had passed. I assumed a little more of my life. I went back to study; I rested some hours. When they visited me they brought me the supplies, it was one trip less to get the supplies and one more day with my daughter. When I had some doubts I called and I felt supported. There was a paramedic who sat for a day with me to talk and it made me feel so well.

A few weeks later Felipe came. We talked and forgave each other. We talked to our daughter; we said that we loved her a lot and that we accepted her destiny. We had a good many weeks , she even had her birthday, with her ventilator and everything !

Our daughter passed away a few days ago. She was the most beautiful gift that life gave to me. We were able to give her the best life that her condition allowed, in her house, with her people, surpassing a survival, that no one imagined!

I'm pregnant now. I went to live with Felipe, we had difficulties like any couple but we are living our love with new energies. We know that our second daughter will be unique but she would not replace our first child, our first daughter came to teach us many things that we hope to practice ...

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Rossana Betancur Escobar-resident doctor in Family Medicine at U. de la frontera in Chile. 

I started to write this material as a compilation of life histories of my patients throughout my 9 years of work. It involves mainly rural health with cultural relevance, as Mapuche population predominates in my area, which I respect and greatly admire.

In 2009, I started working in a Health Unit as a family doctor, at Hernan Henriquez Hospital in Temuco, Chile, the unit was responsible for caring for patients affected by acute pathologies to terminal cancer, in their homes.

People come from all over the region and from the city and I continue to attend a large percentage of rural population. I try to get the attention of my colleagues in other specialties, in a hospital of high complexity, to raise awareness about patients being cared at home with the support of their families. So was born this idea to tell patients life stories and how they have experienced sickness.

Today I am working in a rural health center, located in the interior of Mapuche communities and I hope to write more stories.