Mar

Loreto is a girl of barely two years old who, from social networks and under the name of "Miss Loreto", wastes happiness and "Life" with capital letters to many people. That life that flows in spurts, frank, sincere, "untranslated", has reached point-blank into our heart and has flooded it with reasons to live.

But, behind Loreto, there is a family, and a big-hearted woman who is his mother: Mar.

It is a privilege to present this gift that Mar has given us with such generosity, simplicity and above all courage. We anticipate that it is impossible to remain indifferent after sharing this talk in his living room.

  First of all, thank you for this warm welcome in your home. If we are here today, in a sense it is because your message has reached high, clear and very far, and has brought us to the door of your house.
As a brief presentation: we are with Mar and Sebastián, husbands and fathers of two children, Gonzalo and Loreto. So far, a story that is not "exceptional", but in 2016 something happens that changes your life or redirects it at least. What happen? As was?

Mar: Yes, because until the fifth month of gestation, it is true that Loreto seemed a healthy girl, since we had not done the triple screening in the test because we were going to be open to life in any circumstance, with which we preferred not to do the test.
It was from the fifth month that it could be seen that Loreto's long bones were shorter than normal, they did not grow in the same proportion as in a child who does not have Down syndrome, with which at first it seemed that he was simply going to be a little girl. But then, as the weeks passed, this slow growth rate suggested that something was happening. Then, they referred us to a clinic specialized in detecting diseases in fetuses and with high definition equipment. As soon as they saw the profile of Loreto and others of other typical indicators of Down syndrome such as the sandal toe or the profile of the face, they diagnosed what was not a 100% reliable diagnosis, because it is based on an interpretation of an image, and We were told that the girl surely had Down syndrome.
So, at that moment as humans that we are, as a young married couple and with that we all hope to have wonderful children, prettier than us, smarter than us who go further than us, because the world literally falls on you. Many things go through your head, you think that this could put your relationship in crisis, that your happiness ends forever, you think about the misfortune that your other son has fallen, in this case Gonzalo. Strong things happen to you as a result of ignorance of what Down syndrome is. In our case we had never had a close case, we were not familiar with it. They generate doubts. I didn't know anything. I had many doubts, I did not know when they started to walk, at what age I was going to eat, if they had any health problems ... We did not know anything. It was a series of huge doubts, even as to whether he was going to go to school.
At school I had not lived with people with Down syndrome. Therefore, all those uncertainties and that lack of information generate a lot of fear in you, that fear that your schemes and your dreams will break, because the truth is that you go through what is called mourning. The full-blown duel phase.
We went to the Down Syndrome Foundation, we contacted them for help and information. Then they told us it was as if our daughter had died and a different one was coming. That is real, it is real! They recommended, if it helped us, to change the name of that girl. We did not want to change his name, because since we were boyfriends we have had the name of Gonzalo and Loreto clear and we continue with him, but it is true that the Loreto that you imagined will no longer come, another one is coming.

It is also the fear of how it will be. You even look more at the photos of the internet, of the language, of whether it will come with the eyes like that, that is, you imagine it in any way. In fact, you can't imagine it. You even think: "now this clothes that I had bought so ideal for what?" This then has caused me a lot of pain, having all these negative thoughts. But I accepted that it was part of the normal process that everyone, the mothers and fathers, have to go through. Also with the help of faith.

I remember that when we did not want to do it in the triple screening test, I cried a lot because for me it was like saying to God: I am ready, and I say yes to whatever comes. So that cost me and Sebas said to me: why are you crying? And it was not for me to say to the doctor "I do not do it". I am saying yes, I want this, so God was already preparing me for what was going to happen to me. This must be understood from faith, it cannot be understood from without. But it was so.

  I thank you for the sincerity and depth. We all have a perfect family project, perfect children and a "happy life". However, can it be said that Loreto came to break those schemes?

Mar: Yes, those schemes that we thought was happiness. I have pondered this a lot, what we think is happiness. Having the perfect job, having the perfect child, having the perfect looking husband. We think that by achieving that you get happiness, and I have realized that happiness is not obtained by having everything, it is obtained in how we face life, in how whatever comes, good news or bad news, we are capable of live it. And more in a marriage, if it is together, the marriage becomes strong, even unites a lot. In our case, Loreto has come to unite us even more, because happiness is that, it is how you face what comes to you and if you are able to face it and get good, that brings you a lot, gives you much more happiness than having it everything.

  Each son changes life, Loreto specifically: In what aspects of your life has your daughter changed you?

Mar: The look. The look to the people. It is true that each child is unique and special, and not because they have Down Syndrome makes it more special, but each child teaches you one thing, and in the case of Loreto, in particular, my gaze has changed. That is, I am able to look beyond what we see, beyond the disabilities that are physically seen. Today it seems that you do not want to see anything apparently imperfect, even with clear words I would dare to say that you detest yourself. More so when all that is exalted is beauty, beauty and perfection, because this "other look" allows you to appreciate that behind there is a person, there is a heart and a life. That is what Loreto has provided me.

  As you say, we live in a world that has an almost inhuman concept of beauty, because it is linked to a kind of artificial perfection. This often leads to the rejection of what does not enter those canons. Have you experienced that rejection? For not fitting in, or because your daughter does not fit into those canons?

Mar: Well, the truth is, no. I have never seen them look at me in the street for taking Loreto, pointing to me or saying: "look, poor things." Maybe they have, but I am so happy with my daughter. I see in others what I want to see and this is essential.
There have been moms with children with Down syndrome who have told me the opposite, who look at them on the street and even point them out. But I think that is how you feel. If you feel rejected, when they look at you, you will think that they are rejecting you instead of thinking positive, however, if I feel happy with my family and I adore my daughter and I see her as very cute, well if they look at me for the street I will not think that they are seeing it horrible, it is that it is impossible, I cannot feel it. So in my case, for this reason we have never felt bad at all.

Sebastian: And also what helps is that Loreto is super nice. It takes the street to the entire neighborhood. In fact, they stare and say "look how cute, how nice." Everyone knows her (laughs). It helps their way of being.

  A striking aspect of your history, of the history of Loreto, is its "media dimension". At what point do you consider showing your story to the world?

Mar: Yes, because when I got the news from Loreto, my mother told me about Pepita Mola. And it helped me a lot. I already noticed Loreto's kicks on the belly, the sensations and emotions were strong. So seeing Pepita helped me a lot, because she gave me information about what Down Syndrome is, because, as we were saying, we had never had contact with Down Syndrome.
Then, I saw that the family had not been destroyed, that they were happy parents, that the brothers were also happy. That they kept making family plans, a normal family. That they went to the movies, that they went to the beach. I thought, when they gave me the news, that all this was going to end. So Pepita Mola helped me see that other side of Down Syndrome. And seeing how positive it had brought me, I decided that if it had done me so much good, I also had to do something.
It is true that they are images, but it is a language, it is communication, we also speak with images. I did not have time for a blog, that is why I had to do something that was free, that could spend a week and not upload a photo and not feel tied. And that's how I decided to do the Instagram thing, without any hope that it would have the repercussion that it has. Nor is it that it has much impact and I do not expect to have it. I don't have a goal, I don't care. I just want the people who follow us, whoever they are, to get my message across. What matters is that children with Down syndrome are happy and deserve to live. Just that is enough.

  There are more and more influencers with this social cut, who manage to connect, transmit their message to many people, in your case I would say that of a big yes to life. Are you aware of Loreto's power to reach the hearts of so many people? Before Sebastián said that he was walking down the street stealing hearts. Now from the networks it also does it in a much more massive way.

Mar: Perhaps I am not very aware of that impact. I know that she physically, that smile, that look, transmits, and that helps, and I think that is what makes Instagram reach so much. I mean her pure gaze, that smile, we don't look for the photo, nor do we make her forty, it's that she's always like this, people who know her know it. That is why I really like your project of combining that more commercial part with another part of values, of the human, of who we are, because I believe that it is a bit of the lack that our society has. We have talked about it on several occasions, we feel that the world is lacking and is afraid to feel, to feel good things and to feel bad things. If I am falling in love then we already cut, or if the baby comes with problems and you say “why suffer?”, We cut and we start over. We notice that maybe that is the success, I don't know, we will have to see it, but what people tell me through the account is that the images arrive and the words arrive as well. I talk about my feelings and I talk about what Loreto generates in us, what moves us in the soul. And that comes. Today people do not dare to speak about what they feel. Many do not even know what they feel.

  Loreto, in a certain sense your heart has changed and this has radiated everywhere. It can be said then that a child with certain difficulties or disabilities has a meaning in life, does she have a mission?

Mar: It is a hard question. We believe in God but I do not believe that God has sent us an illness. But I think these are biological things that happen and that are not always in God's hands. Due to our human condition, the disease arrives, in our case the chromosomal mutations are random and spontaneous. I don't think God intervenes. Now what has something positive? yes. I believe that everything can be positive, and even serious illness of children.
We know a child: José María, to whom we are very fond. A severe leukemia passed. And in that family a miracle has happened, it has transformed hearts and made a super strong and unique family, there are few families like them.
It is complicated, but if at least that family is able to find some light in their pain, then they do find very beautiful things that remain for life. Now, if that's a mission, it's complicated ...

  It is clear that a dependent child demands more attention, more "giving life", to put it in some way. How are you doing this Mar?

Mar: Well, I think that once you decide to be a mother or father, you already lose focus on yourself. And live for and for the other. When you get married, the focus is not on yourself and when you have children even more. Be more or less dependent, your life has changed, your focus is already on the other, it has come from yourself.
Regarding that he has a disability and requires more time, we really take it very naturally. So far Loreto has only asked us to take her two days to the foundation, three-quarters of an hour. One day she wears it and another day another. But it is like the time it takes us to take Gonzalo to what is now called paddle tennis and then it will be something else. But it is that Loreto when she turns six years old will go to ballet. We do not see that it requires more time on our part and we carry it very naturally, because in the end each child requires one thing. Loreto is now physiotherapy and maybe Gonzalo in the future because I don't know what it may require, maybe extra support in mathematics because he doesn't get it. For now we have not felt that overload, it is true that their learning is slower and requires more insistence or more patience, and more perseverance. But that does not involve more work, nor emotional.
This is another thing that scares you when you receive the news because you think it will mean a lot to you, I thought I was going to have to leave my job. And not at all, if life is the same, nothing changes, only your focus, your gaze, that's what changes you, but more from within than on a day-to-day basis.

  In Spain at the moment there is a topic that is very much on the table and it is that of a kind of "demographic catastrophe", something that is already having consequences. After what you have told us about the acceptance of life, how do you see this?

 Mar: Well, to break this demographic catastrophe, we are once again expecting another baby.
We are now more aware of the risks. It is not the same as when we get pregnant with the first one that you are like a little unconscious, blessed unconsciousness! (laughs) I miss that unconsciousness of thinking that everything will turn out well. But now we are more aware that when you decide to be a father you have to commit yourself. We welcome the son who comes at home and we welcome him for life, because we will be his parents for life, until the end. Now it will be the problems of a baby and then those of an older child, and then if they catch him in college, it must be said that in the end problems always come. Loreto the same. We are aware that in the future Loreto will have other problems, the typical adolescence of a 15-year-old girl I will not pass, for which I am very grateful, but I will have others with different names.

  We were talking before about a concept of beauty that excludes any type of imperfection or "wrinkle". We see a lot of beauty in your family. And since we come from the fashion world, tell you that Loreto is always cute. Do you have any criteria when dressing Loreto?

Mar: Well, that's what I said at the beginning, I even wondered why I had bought such cute dresses for a girl who perhaps didn't even have to be so cute dressed anymore, because I was no longer going to attract attention, that came to me to go through the head. And when she is born, because you see her as beautiful, she is your daughter. And I like to dress my children well, because Loreto does not deserve less, I see her precious and I spend what I have to spend on any child. I don't make a distinction because I have Down Syndrome or not, I see my daughter.

Sebastian: Mar has great pleasure, she dresses great (laughs). She follows several clothing brands and orders the clothes as she likes, half designed for the girl and with a lot of style. She loves combinations with accessories and wearing it very cute.

  I really like this last reflection to finish. And the circle is closed in which behind beauty is love, and we believe that there is so much beauty here because there is a lot of love in your family.
Thank you very much, Mar and Sebastián, for showing us with this warm simplicity and with such emphaticity the beauty of love, of the family and of your commitment to life. Thank you also for wanting to share with everyone this beauty that heals and saves the world.

Instagram: @missloreto