Chema and Marta, with a son with a disability: “We went from confronting God, to leaving everything in his hands.”.

Marta and Chema are a very ordinary couple, or so they say… Because… Who sticks a chocolate donut on their finger to propose to their girlfriend? Well, Chema does. He tells us in this interview that, to propose to Marta, he went to a bar and did it in this very original way. He calls it the “anti-proposal.” Anecdotes aside, they are indeed very ordinary. Because ordinary things happen to them. Like the unexpected birth of Jorge, one of their four children, who came into the world with several difficulties, which have made him very special, and they take it all in stride, without any drama.

We were able to interview them both and they told us this and much more. 

Marta grew up with two brothers and studied at Opus Dei schools, something that, she says, has prepared her to "face whatever God sends us." Chema, the sixth of eleven siblings, learned from a young age the value of hard work and never giving up.

I suppose Jorge's arrival was like the beginning of a journey you were unknowingly preparing for. How do you interpret this event? Do you feel freely prepared for such a complex task? How providential do you see it? 

–At 20 weeks pregnant, we had a very important ultrasound. At that time, they told us that something was wrong, that the heart and cerebellum weren't closing properly. We went to other specialists, and it was confirmed. But we were completely uncertain about what that would mean. 

Each week that passed, the news was confirmed and worsened. It was a high-risk pregnancy, and the delivery took place in an operating room at La Paz Hospital. I was terrified waiting outside. As soon as he was born, they put him in the incubator and let me see him for two minutes. I took the opportunity to baptize him with a Bezoya water bottle. 

He was then taken to the neonatal ICU and began a six-month struggle in the hospital (from June to December) until he was finally discharged. He has since had many hospitalizations and undergone several major surgeries. 

At two years old, for example, he had heart surgery, and things became very complicated, requiring four more operations in quick succession. It was one of the most critical moments of his life. Now he's 14, and we continue to fight every day with great effort, but with hope and a positive attitude. . 

Marta, how did you experience Jorge's arrival?

 “At first, I was stunned and didn’t understand anything. It was a huge shock. I was so excited throughout the pregnancy, and then I was faced with all of this, which left me completely overwhelmed. But day by day and month by month, as the pregnancy progressed, I drew closer to the Lord, and He gave me all the strength to fight and keep going… and when he was born, I saw a precious, tiny baby who needed me, and I thought, ”We have to keep going… let’s fight with all our might,’ and that’s what we did and continue to do, always with a supernatural perspective and trusting in God. He gave him to us this way, and He wants us to treat him as he deserves.”. 

At that time we only had a three-year-old son whom we had to "abandon" for six months because we had to be in the hospital. 

Some days my father would take Álvaro to La Paz in the afternoons so we could see him. Álvaro didn't understand why he couldn't see his brother and why the baby wasn't coming home, but we explained it to him as best we could. It was hard for him: imagine being three years old and thinking that having a brother meant being without parents for months. 

And you, Chema, how did you take it? What did your children think?

“I couldn’t believe this was happening to us. You always think things will work out… but when they keep getting worse and worse, you start to despair. It’s so hard when you see your baby, completely innocent, suffering, and you can’t do anything. I had some very dark moments, when I didn’t understand anything, when I was at odds with God, when I almost lost my faith. Until one day, I put everything in His hands.”.

Marta, how do you manage to support your family? How do you foster independence in all your children? 

–Marta: Well, we don't do anything out of the ordinary, but I think our children have gotten used to living with a brother who is "special" and who often has to spend weeks in the hospital, sometimes with high risk, and they treat it as if nothing is wrong, and above all we try to normalize the situation. 

For example, Jorge has a limp and wears an orthosis, like a small prosthetic leg, which we call a "peg leg" at home… We treat Jorge like any other child and we push him—within his limitations—but we push him so that his siblings can also see that it's okay…

 His sister Rocío (12), for example, is very affectionate and defends and helps him a lot… she treats him as if he were younger and he gets angry and says to her: “I am not a baby, I am older.. 

His brother Diego (8) makes him laugh a lot, plays with him and does silly things to make Jorge laugh… 

 Chema: In short, Jorge is a happy child, loved by everyone, with such a pure and beautiful gaze that it touches your soul. It's hard to take care of him, especially on some difficult days. But he has become the main pillar of the family, and he's the one who has taught us the most about love in life.  

What advice would you give to all those who are surprised like you but are less prepared at all levels?

–Marta: I advise you to ask the Lord for strength, to surrender yourselves to Him, to pray a lot, and above all, to fight. To fight hard to help your child pull through. The doctors paint a bleak picture, but if you persevere, you can achieve many things… Children are stronger than we can imagine, and they need us to be there to support and help them.