Esperanza and José Ángel: "You can no longer live without your Down children."

Four Spanish families have adopted two children with Down syndrome each, and they agree that "they are a gift". They can no longer live without them, because they make their families happy, and they see their happiness. On the eve of the International Day of Persons with Disabilities, which the Church in Spain celebrates with the slogan "You and I are Church", Esperanza and José Ángel talk to Omnes.

Francisco Otamendi-December 3, 2023-Reading time: 6 minutes

Esperanza and José Ángel, with their children, greet the Pope in 2019.

The eight parents are Beatriz and Carlos, who spent eleven years trying to become biological parents without success; Antonio and Yolanda, who have six children, all of them adopted, the last four through adoption offers of special difficulty, and of which two have Down syndromeWe have also had the pleasure of talking to Ana and Carlos (fictitious names), whose first five adopted children, in phases, are Russian; and Esperanza and José Ángel, with whom we spoke. 

It is known that, in the West, the majority of children with Down syndromewhose trisomy (three chromosomes in the 21st pair) is detected during pregnancy, "do not make it to birth... and we all know why," explain Esperanza and José Ángel. Between the years 2011 and 2015, in Europe, 54% of babies who were detected with this genetic anomaly were aborted. And in Spain, the percentage reached no less than 83%, according to data provided by the Ibero-American Down 21 Foundation, the parents add. 

In March of this year, 2023, a report from BBC World reported that a group of experts had concluded that in Europe, in the last decade, 54% of pregnancies in which the fetus had Down's was terminated. The paper by De Graaf, Buckley and Skotko, which was published in the European Journal of Human Genetics (European Journal of Human Genetics) in 2020, and updated at the end of 2022, noted that the proportion of selective abortions was higher in Southern European countries (72%) than in the Nordic (51%) and Eastern European countries (38%).

We talked to Esperanza and José Ángel about some of the reflections and testimonies of these adoptive parents.

You have studied the work of Brian Skotko, director of the Down Syndrome Program at Massachusetts General Hospital and an associate professor at Harvard Medical School. Can you add any more data? 

-Dr. Brian G. Skotko coordinated a team that interviewed 2,044 parents about their relationship with their Down syndrome child in 2011. Well: 99% of them said they love their son or daughter; 97% of those parents were proud of them; 79% felt their outlook on life was more positive because of them; 5% felt embarrassed by them; and only 4% regretted having them. Parents reported that 95% of their sons or daughters without Down syndrome have good relationships with their siblings with this disability. The vast majority of parents surveyed indicated that they are happy with their decision to have them and indicated that their (Down) sons and daughters are a great source of love and pride.

Why this contrast between the happiness expressed by people with Down syndrome and that of their families, and the current option of abortion for the majority?

-These four Spanish families, including ourselves, have each adopted two children with Down syndrome. They all have their own story. But they all agree, we all agree, on at least one thing: they can no longer live without their children. Because they make those around them happy, first and foremost their parents and siblings. Because they see that their children are happy. And because it is very difficult to meet one of these people and not love them. And love - to love and be loved - is what makes human beings happy, first and foremost their children.

And that in the stories of these families there is also sacrifice and hard times. There are demands and pain. Raising and educating a child with Down syndrome requires a lot of effort and there may be situations -although not necessarily, not always, not all at the same time- of health problems, learning difficulties, behavior disorders, disruptive behaviors.

But we are absolutely normal people, "not heroes", who encourage other normal people to have their children with Down syndrome. And to parents who do not want or cannot take care of them - for whatever reasons, which we will never judge - we encourage them to give them up for adoption.

Tell us a flash of your case, how was the decision?

-We could not have biological children, and there was suffering. However, a series of circumstances aligned until we made the final decision, after a process of discernment, to embark on the adoption of a child with Down syndrome. Christian faith also played an important role in that decision: "Whoever receives one of these little ones in my name, receives me", "whatever you do to one of the least of these my brothers and sisters, you do it to me".

When they shared the decision with their family and friends, most of them received the news with joy and excitement, the same that they already felt. However, we know of a couple who offered to adopt a child with Down syndrome, and when they told the family, they were shocked and tried to dissuade them by all means: that they would not be happy, that it would be a burden for the siblings....

The truth is that the opposite is true. For all siblings of children with Down syndrome, the arrival of their sibling has been an enormous enrichment. In addition, the siblings acquire a special sensitivity with this type of person: you can see it in their gentleness, their patience, their affection when they see one of them...

What did you perceive when you met your two children?

-Immense happiness and emotion. The second adoption was awarded to us because the social services of the Community did not have any other family candidate or with the suitability required by the Administration. 

Since then, a journey has begun, not without sacrifice and effort, with sleepless nights or little sleep, with illnesses, with slow progress in development, with day-to-day difficulties -the battles to dress them, wash them, feed them...-, with the uncertainty of not knowing if we are doing well as parents....

But above all that "there is love and love can do anything". Their adoption is "the best thing we have ever done in our lives.

Any anecdotes about these marriages that you know?

-Carlos, initially, in a context of some difficult circumstances they were going through, said no to Beatriz's proposal. But in the end he gave in. On one occasion they were called to offer them a child with Down syndrome, three months old, with a heart condition for which she has to undergo surgery. In addition, the Administration required them to move the whole family to their city and wait for her to reach the right weight to be operated on. The little girl had already gone through three critical moments. All this made them hesitate and in the end they rejected the adoption: "For us, saying no was like an abortion," explains Carlos. "My heart was crushed, we rejected our baby," says Beatriz.

However, she asked the Lord that this child would have the arms of a mother in heaven or on earth. And nine months after she said no, they called them again: that she had been operated on, that she had survived the operation and that they wanted to go for her. "We had to fly," Beatriz says with emotion.

About Antonio and Yolanda?

-Antonio recalled that "the Lord questioned us because in the adoption process documents there was a box that, if you checked it, you offered to adopt a child with a disease or disability. In the first two adoption processes, we did not check it, but that decision marked us.

It was in the context of a pilgrimage that they saw him calling them to "be parents of a son with difficulties. It was not easy but He, who is a gentleman, whispered it to us". And so came our third child," the first with special needs. Antonio explains that "when we already had this last one, he invited us again to open ourselves to life, and the fourth child arrived, who was born with hypoxia and brain damage. It was a great gift for us.

A final thought... 

-As Jesús Flórez and María Victoria Troncoso have pointed out in Our TimePeople with Down syndrome give to society much more than what they receive" Maria Victoria insists: "The world would be much worse without people with Down syndrome". 

To all these human beings with this genetic alteration, to whom today's society so often discriminates -is there any greater discrimination than not allowing them to be born?- we can apply the words that Jesús Mauleón dedicated to his friend Genaro, with Down syndrome, in a poem: "And when you go out into the street, you make the world better/ and you make the air you breathe deeper". 

I hope that today's society realizes this because, as I was saying Jerôme LejeuneThe quality of a civilization is measured by the respect it shows to the weakest of its members. There is no other criterion by which to judge it".

The authorFrancisco Otamendi

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