Alexandra

We are in May, the month dedicated to the Mother, and that is why we want to present to you the story of Xandra (Alexandra Morgan), a Mother also with a capital letter. And an "Alawa Woman" who has had the generosity, courage and humility to share her life with us.

Xandra is Uruguayan and lives in Montevideo. She studied journalism and communication (being the first graduate of the chair in Uruguay) and currently works and for many years as a production manager for a prestigious Uruguayan television channel, Channel 12. She is married to Emiliano Cotelo, also a journalist and program host radio and television station well known in Uruguay. And together they have three children: Diego, Felipe and Catalina.

The day is radiant and begins with a bright and blue morning in this emblematic capital of the southern American cone: Montevideo. Behind us, a nostalgic sea with the name of a river, the “Río de la Plata”, lulls us with the noise of its waves breaking on the sand. A few steps forward, we find a house with a large and welcoming entrance, as if the architecture stretches its arms and waits to embrace the one who knocks at the door. It is Alexandra's house, or rather "Xandra" as it is called as a family. She comes out and abducts us into a universe that we would never have imagined behind the door. We passed through a room where art gave us a caress in the senses and with the speed of a dive it planted us on the green lawn of an indoor garden. Well, garden to give it a name, but to make it better understood, we would call it “oasis”. A little piece of orchard in the middle of the city, with trees, walls, orchards, flowers, water and grass that speak of someone with nostalgia for the countryside and contact with nature. It was difficult to return to the living room, but there we sat with Xandra, not knowing what awaited us: a time that would leave a deep mark on our lives.

  Xandra, thank you for welcoming us into your home and welcoming us so warmly. We are impressed by your academic training and your rich work experience. Regarding your studies, you have opened paths that few women have traveled in this country, then you have worked in the press and now also in a television channel as a production manager. We could say that you are encyclopedic, a Renaissance woman. But today we wanted to stop at a more intimate facet, if you allow us, and it is that of Catalina's mother, or “Cata” as everyone calls her.

Well, I stopped talking about it a long time ago, because my children said "that's it, enough about the family." The last time I spoke at length about the subject was in a book written by Mónica Bottero, which is called "Mothers to the limit" *, where she tells the case of five mothers whose lives had some setback "x". One is about a mother who had a boy with an addiction and who ends up dying, another about one from whom the father kidnaps the children and she ends up finally running away with the children -for me it is the most dramatic case of all-, and well in total there are five cases, one of them is me, and there I tell the story of Cata.

  It seems like a cliché to say, but all children are special.

Yes, they ask me, "How many children do you have?" And I say three. "How is Cata?" Well. Because also Cata does not have any disease. What she has is severe cerebral palsy, the product of hypoxia in childbirth - that is, she drowned at the time of delivery - due to a medical error. So many people ask me "and how are you today?" From cerebral palsy, stable for 24 years. Cerebral palsy is by definition irreversible damage to the brain, which does not get worse, but does not recover. What was damaged, was damaged. Cata has her motor system severely damaged, with no return, and her intellectual system perfectly healthy. You can spend hours thinking, what would be better? Perhaps if she did not have 100% healthy intellect she would not realize many things. But we ask her every so often, under the recommendation of a psychologist, if she is fed up with having cerebral palsy. And Cata makes a face of "No, I was asking if today we are going to go to the beach or not." Whenever we have asked him, he has told us no, not that way. But every so often, we give you a chance to complain.

  I imagine that in certain things it will have been learning to live again or learning to live with a child with these characteristics.

Totally. I am always the positive one and Emiliano, my husband, is the most pragmatic. The day he was born, I was not so positive about that, and Emiliano told me “We are in the statistics, this is a number within them. We cannot spend another minute thinking about it, but we are here ”. And from then on we build. We had luck. The bad luck we had with the doctor at the time of delivery, but then it was reversed and compensated along the way by the different doctors and people who were accompanying us. The best cure Cata has is that she has siblings. The neurologist told us from the outset that there would be no better medicine. And it's true. Cata was going to fall, to fight, to cry because they were going to push her, to laugh, to complain, etc. That is being a brother, and those of us who are blessed to have many siblings - I am the fifth of six siblings - know that it is so. Taking a parenthesis, I once told Mom - as if a tragedy were happening to me - that I didn't have a baptism album, and my mother was very pragmatic, as she always told me: "choose the one you like the most" (laughs). End of my tragedy that I did not have an album, and I have a borrowed one from one of my sisters that they put two photos on top and the topic is over.

That later has also been applied to the fact that we have tried to make Cata do as much as possible, just as we wanted for her brothers. If we go to Brazil or New York or wherever, we try to get him to go to all the shows we attend, etc, but we have also done the same with the others. There were no differences. The difficulty is that when it is older, mobility is more difficult, and we are older too. The reality is that you need more help and she does not admit "I can not go" now. Sometimes, there are places that are not prepared for people with disabilities that I cannot take her to, because I cannot go up two stairs in a row with her, or because I go to a place for ten minutes and all the work involved in assembling the chair, disassembling it, raising it, lowering it, etc., does not compensate. And I tell Cata, clarifying why. And sometimes she fights me, but it is what you can. In that we have tried to be as realistic as possible with her. There is a phrase that says “rigor with lettuce”. Lettuce is fragile, but you have to handle it well. Well, she has had a very integrated life. She goes and went everywhere and we have made scandals in some places that did not want to let us in.

   I was going to ask you just a few things that you have already introduced or answered. The brothers, although it will have been an apprenticeship for them, will have been key pieces for the development of their lives.

Absolutely. We have always talked about this happening to all of us. You try to stop the other boys from carrying it so much, but no matter how much I say it in the speech, they will carry it. They were totally key to everyday life: the three of them rode in the car together behind each other and if they fought they would fight, they played together, they slept together, etc. There is nothing better than the "normalization" factor in such a situation. And the brother is not going to tolerate you saying "I am disabled, they have to take care of me first." In three and a half years all three were born. There was not that time to understand that reasoning, and until today. Her brothers were undoubtedly the best school for Cata, and also being able to integrate it into a common garden. Mariana Zorrilla, who is the director of the “Snoopy” garden, told me to also take her to the nursery where her other two brothers went, to have the children integrated.

  You have introduced a very interesting topic: How does society approach Cata?

Well, starting with going to the garden where his brothers were already going. All the children were crying to leave and Cata looked desperate to get in because her brothers Diego and Felipe were going there. And the garden was adapting with it. And then Cata started at the “Colegio Inglés”, together with his brothers, where they had not integrated the disabled then, and it was a creative process. And at the same time we founded, at that time, a center for children with cerebral palsy, which I have to say was an inordinate effort.

  Can it be said that this foundation was a fruit, or an achievement, of what your daughter achieved in you?

That is a "romantic" look. It was a gigantic and inordinate effort. We were four mothers who founded it. Two of them wanted a place that would contain the child, that is, a nursery, and the other two of the mothers wanted them to be educated to the maximum extent possible. Well, we worked hard and put a lot of effort, hours and money into it, with a series of regulations. And then when Cata turned 18, I was already exhausted. I never took it as a work for humanity or for society. It has zero epic in my case. Although epic was riding it.

  But it was an "adventure" for your daughter.

Totally yes. Although she went with guys in the morning who had no problems, she was also the only one who sometimes couldn't do things, but she got along well, and she loved that group of friends that she continues to maintain until now. But also in the afternoon she had "peers", who were as "clumsy" as her, who didn't have the skills that she didn't have either. So the two worlds were real. The one in the morning, the same as that of her brothers, and the one in the afternoon, which combined all the therapies together. Because if not the subject of separate therapies, it implies an impressive logistics: assembling the chair, putting it on, sitting it in the car, disassembling the chair, raising the chair, going, parking, you go back down and assemble the chair, to seat it, to move it and if the therapy elevator does not work, you have to raise it all the floors that are yourself, and then the chair, and the story can be made fun but you explode inside. Because you also have to work and do everything else. There is the rest of life, there is a New Year's Eve party, the cistern also breaks, you have to call the plumber or the electrician, go to work, take care of the other children and try not to carry these things, and all that it's more effort. And by combining the therapies in one place, parents summarize all the work in one a day.

  Before this story and this life that we contemplate, we see a brutal beauty.

But it is a beauty more seen from the outside. I am more raw with this. It is exhausting to see it from the inside.

   How do you stack that? We, as you say, "from the outside", see a beauty, and yet we all want to escape from suffering. In this story of so much effort and moments where one wants to "get off" from it, is there an image where you see that it has contributed something to your life or that it has given a touch of color or light?

They have asked me several times and I always say the same thing: if I could choose, I would choose that Cata had nothing. If you told me "how lucky it was!", No. I am an Irish Catholic. I am a little more pragmatic. I remember in my childhood when we used to go sailing, the outboard motor ever broke, and my mother said "now everyone to pray", and father said "unless they go to pray that the Lord threw me a bolt, what pray nothing and let everyone row and swim ”. So, I repeat, if I had a choice, I would choose that Cata had nothing. I could have had worse things, yes, but I try to compare myself upwards and not downwards. That in general terms. Now, as we resolved that it had the maximum of normality, the effort was extra. If we had slowed him down a bit thinking that he didn't have to do everything, maybe life would have been a little easier. But it was not the option we took, nor the one it will be. The option was for him to do the most he could do: horseback riding, kayaking, etc. The normality that we have is this. I have some discrepancies with Pope Francis, but with respect to the "abnormal" families that he speaks I totally agree, with the drunk uncle, the heavy grandmother, or the brother with I don't know what story ... that's normal, and for us this story is normality. This is the life that has touched us.

  Well, that picture that you paint, we see it beautiful.

(laughs) No, what I want to say is that sometimes among Catholics it is said "how lucky it was to you" and it makes me want to say to him "you don't know what a pain it gives me that it has not touched your children ”(Laughs). And there is another thing that also happens a lot, among mothers of the disabled when we have meetings, there is a mother who tends to say with great grace "there is nothing more boring than the mother of a disabled person."

Sometimes people, with the best hearts, but without knowing how to approach the subject, tell you "the same thing happens to my daughter as yours, I had to take her to the psychomotor doctor." It also happened to us once that I was with two moms at a party table, and I was feeding Cata -which is quite an extensive task-, and they were talking about the achievements of their 15-year-old daughters -in that then the same age as Cata-. Throughout the night they were talking about the wonders of those two daughters: Olympic Mathematics Championship, skiing, the best in class, the best athlete, and also loving, intelligent, nice, and they got scholarships, etc, etc. The girls were a beauty, indeed, they set the table, lifted it ... They did everything you could think of. I take it with a lot of humor, but it was like that all the holy night, and I kept feeding Cata, which was more and more dramatic, because all of her bib had gotten wet, I had stained, and on the other hand the only thing she heard was the pleasure of having those children with those characteristics. And I, who generally do "bad things" and jokes to Cata, say: "Do you see Cata that you are a disaster?" (laughs). In this we have tried to make it as close as possible to reality.

Once we went to enter a commercial premises and they told us that Tasting with a chair “no”. And I told him "I tell him get up and walk and he doesn't listen to me, he doesn't walk" (laughs) "Tell me how to do it?" It was a scandal, on a Saturday afternoon, and we finally left without being able to pass. I put it in networks and at night my husband had received a letter apologizing to him and trying to correct the mistake, from the director of the place. In this we have tried that, in addition to the “noise” that you can make, for which we particularly have more tools than others, it is also useful for others and has a benefit beyond us. Because when this happens to mothers, they die inside.

  Alexandra, when we talk about beauty, we talk about love. Of these stories you have told, there is a lot of love from a mother, and not only for Cata, but for your children and your family.

Yes love yes. What I'm saying is "don't think this is easy." Cata for example went to Salta, Argentina, to a Marian shrine, many times. And the organizer tells me "the mantle of the Virgin protects us" and I tell her "the mantle of the Virgin also tells me to make it coherent." I get on the bus and distribute a manual to all those who go on the excursion from Montevideo, on how to take care of Cata, and I also tell them "in addition to taking care of Cata, take care of the one who is accompanying Cata", because the one who goes with her, when everyone ends up tired, she is "made paté". When you arrive at the hotel, you have to change her, feed her, put her to bed, put her on her stomach, order everything, get things ready for the next day, and the next day get up an hour before the rest because if not, you won't arrive with the rest .

  Love, if it's real, hurts a lot. Love and suffering go hand in hand.

So it's not fascinating (laughs). What I try to tell people that something similar has happened to them is that it is not a horrible path, but it is a path that has some thorn more than another, but then you will have normality. Maybe your head is going to hurt, but you're going to go to the movies, you're going to argue why you bought a dress or another, that is to say that everything is part of this.

   We title this section of Alawa Women, with a phrase by Dostoyevsky that says "Beauty will save the world" and we speak precisely of this beauty: that it hurts a lot, that it has many thorns, but that it "saves" us from looking at ourselves so many times. belly button.

Yes, I see it as in that sense yes, and it makes you be a little more useful to others.

I tell this with great pride, because once we were in La Pedrera (a seaside resort in Uruguay), in the roughest part of the beach, and my son Felipe was with all his friends, and suddenly he looked at the sidewalk and saw a mother with a child with cerebral palsy and an umbrella. Then Felipe tells a friend “come on, you just followed my orders”. They get upstairs and say "don't worry, we're going to help you" and greets the child "hi, what are you doing, I'm Felipe, and what's your name?" And then they take the chair, they lower the child, they set up the umbrella for him, they greet him, and then they tell him that they would see each other later and that they would invite him to play ball, and they left. The lady sits on the chair, and starts to cry. And cry long and hard. And Felipe's friend tells him "we did something wrong, the lady won't stop crying." And Felipe says: "no, don't worry, she's happy." He is also very pragmatic. And it is that, we all become more "useful" beings. If you want a positive reading, that's one for sure. We can help more easily. According to Emiliano, in a wedding of a thousand people there are two abandoned elderly ladies and the only one who finds them is me (laughs). But because I see them at the foot of the stairs and that they cannot climb it. I detect them faster and I don't mind getting closer or it is simply that I became more agile to say: "Can I help you?"

  How can you handle everything? Because anyone could think that something like this is happening to her and that her dream life of professional achievements, social life, etc. is over, and you show us that you have been able to achieve all that you can aspire to.

Surely it is that I do not make everything perfect. I do not have the perfect house as I would like, among a thousand other examples. And I have also opted to have a professional life that fulfilled me, and all that I earned at the beginning I used to pay people who could take care of Cata and my other children while I was working. And on the other hand, and thanks to this, when I traveled for work -which of course I did not make all the trips that I could or should have made- I spent a lot of my free time visiting doctors or organizations to see how to improve the life of Tasting. There are many mothers of disabled people who give up professional development to dedicate themselves 100% to their disabled child. I can't and couldn't, but I clearly admire them. And of course, it was always a team task with Emiliano, my husband, and that was and is fundamental. He has always taken it with the same love and responsibility.

  Many times we ask ourselves, how can we communicate with guys like Cata, who have Cerebral Palsy?

There is a system called Alternative Augmentative Communication, which part of a binary system. You can ask Cata if she wants a banana or an apple, because she makes a gesture with one hand that wants to say “yes or no”. But how do you ask him where do you want to go? One day we spent three hours to guess where he wanted to go. Finally, we told him that, as for the movie game, to point out 2 words in the book that were representative of that place. And she pointed to a Church, and then number 3, which meant that she wanted to go to the “Tres Cruces” Shopping (a shopping center that is next to a Church).

On the other hand, Catalina also studies English, with a private teacher. If we understand if he speaks, the answer is “no”. But she does understand, because you tell her a phrase and she understands it. She has no intellectual problems, so she should be able to learn anything. What you cannot have is the experience of evaluating that knowledge, which is difficult. But with that communication, and paying attention to sight and knowing that yes and no is the easiest tool, and believing me and believing that she understands me. Once you understand that, and you know that she is understanding you, you can communicate with her.

  We know that Cata has a project called “Catalentas”. What does it consist of?

Cata has a teacher named Cuca, who helps her plant potted plants, and she goes to her house once a week, on Thursdays. And over time they have made so many that you cannot move from all the ones in the garden. So Cata, last year, came up with selling them.

As his brother Felipe works in advertising, he made a flyer, and we sent it by whatsapp. And this "exploded" from Monday to Wednesday. The first person to buy took 22 plants. Crazy.

So this year, Cata wanted to get back a summer swimming teacher that she had from a few years ago to have classes with her again, and I said “oh no, but it's very expensive”. And he made a face of "no, but I make money, I sell plants." And then we put a flyer again and so we resumed. In total, to this day, we make one or two sales a year, with which Felipe helps with advertising and summons.

So Cata has the experience of doing something productive. She does the whole process with the plants (always with the help of her teacher) and then there comes a time when the sale occurs. That for the head is wonderful.

  And you, are you present when she sells?

Never. In that case, the physios usually tell you, of the “n” therapies that you go and that are eternal and boring, “mother, what you have to do now is, every afternoon, from two to four, is this exercise; and then you have to make sure that when the girl eats she is in the perfect position. Take the spoon with your right hand, and then give it and try not to tip anything over, etc. " And one day the pediatrician was there and he listened to the whole speech of the physio and told him "the lady is the mother, she is not going to do any of what you just said", "now I'm going to sit here and see how you feed him that way ”. Generally the technicians try to load you with all the things that you could do so that the girl for example does ballet. And he's not going to do ballet. But there is a stage when they are little that you think that if you did five times the therapies and stopped working and dedicated myself 100% to her, perhaps the girl…. No. The advice of good doctors is the one that tells you no, that you can't do everything. You have to be a mom. There are many people who tell you "oh how divine, yes, I'm going to be there for a while, what time are you here?" and you tell him "when you don't come" (laughs). Because it happens a lot that there are people who want to help you and they come and talk to you, and the girl as if she did not exist. The same when they have very stable caregivers, people talk to them and ask them "Does Cata want to eat?" and you answer "I have no idea" and then you ask her. He's not nice, but we do militate for him. "Is Cata cold?" "Cata, are you cold?" The process is slower, but it is the only way to involve her, and you have to let the people who want to help her know. If you act for it, you are canceling it. And we do have it all incorporated at home. The summary of how you do it is an everyday gymnastics.

Once it happened to us that a friend of Felipe, with those who have a music band, came and told me "Tas's mother, we are taking Cata because we don't have anyone to sing for us in the choir" and I said "Joaco, Cata he doesn't sing ", and then he replied" well, let him play the drum, there's a woman missing from the band. They took it and brought it to the band. That kind of thing is transmitted by normality. And that also the brothers give you. We go back to the beginning.

  Thank you, Xandra, for this unforgettable time, and for your great generosity in sharing your life, your experience and so many learnings with us.

* Book "Mothers to the limit. Five stories of love and courage. " Monica Botter. Editorial Aguilar, 2008.

Instagram:  @amorganvilaro

www.fundacionybyray.com.uy

Project "Catalentas" (private sales)

To share is to live!

4 replies on "Alexandra"

  • Cecilia

    I loved the note. A different look at the concept of beauty. It is urgent to de-romanticize to normalize. Felipes urgently. It is urgent to demand habitable the world we inhabit. It is urgent to find beauty in looking at the other.
    I appreciate the reading and the invitation to reflect.
    Cecilia

    Reply
    • Alawa

      Thanks to you Cecilia!
      Thank you for your words, your enriching thoughts and your gaze towards “the other”.
      Greetings from our entire team.

      Reply

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