shadow brothers

In 1989, Macarena (60) began having one of the toughest fights she had ever known. Her daughter Catalina, then two years old, was diagnosed with leukemia. Together with her husband, they made the difficult decision to go to the United States in search of the best therapy for their daughter. The chances of survival with the Chilean treatment were 70% and there, on the other hand, he was assured almost 100%. There was no doubt: we had to leave.

But when she goes abroad, Macarena had to face another pain: to say goodbye to Samuel, her eight-month-old baby who had to stay in Chile with her grandparents. “I was still going to it but I couldn’t wear it. Having to wean like this, all of a sudden, was devastating (…) From there was born a strong feeling of guilt for having left him. It was extremely torturous not being with him and not seeing his progress,” Macarena recalls. And even though after four weeks they were able to come back for him, the consequences were obvious. “He didn’t want anything from me for one month. I couldn’t hug him or breastfeed him, he completely rejected me. This period was very sad.”

From the moment a serious diagnosis is known, family dynamics take a 180-degree turn: medical consultations, remedies, worrying about financial burdens, emotional ups and downs, and endless consequences. Attention is placed – reasonably – on the child who needs more care. Meanwhile, healthy siblings – known as “invisible children” – often feel ignored and may fall into a void of indifference, loneliness and anguish.

“They become absolutely invisible children,” explains Macarena. “Samuel learned to walk because he realized that if he moved one foot and then moved the other, he would move forward. Not because I was with him like I was with his sister. He was a self-taught child in all his learning. And even though her son still holds no grudges, Macarena can’t forget. “It’s a guilt that’s been around for a long time, and sometimes it still is.”

Even though Catalina was freed at the age of 16, Macarena’s nightmare won’t end there. Francisca, the third of her four children, was diagnosed with the same disease when she was 23 years old. History repeated itself. Again, there was this feeling of guilt for not being available to meet the needs of their children, even though they were all older. “Besides, Catalina was pregnant,” he recalls. But her daughter interrupts her: “Mom, I had already given birth! “Well, so you realize how invisible they were,” Macarena said between laughs.

Having a child with a serious or chronic illness or any other special need is catastrophic for any mom and/or dad. But that’s not the only pain they have to face. “Mums are also very aware of the fact that there are siblings who receive less attention, and this generates guilt”, explains Maribel Corcuera, psychologist expert in parenting. “And that’s when you have a child in a clinic or a hospital, you can’t leave them. It goes beyond one, it’s like instinctive.

Maribel speaks not only as a specialist, but also from her own experience.

When Benjamin, the youngest of their two children, was only one year old, he had to be intubated for asthma. “Doctor, tell me the truth, can you die?” asked Maribel, her soul on a thread. “Yes,” they replied. From that moment, she no longer separated from him. “My natural instinct was that I didn’t want to be separated from this son who needed me the most,” he says.

For years, Benjamin had so many relapses that Maribel spent much of her time at the clinic. “My other son, Matías, had to get used to the fact that I often didn’t sleep at home,” he recalls. “Once Matías told me that everything was very unfair, that he had to go to school while I was with Benjamin, but that he also wanted to be with me.”

According to the psychologist, it is normal to hold on to your child who needs it, and it is also normal to feel guilty for doing so. “But it is important that parents try to get rid of this responsibility. Their responsibility is to remember that this other child is there and that they too have needs, but if I have a sick child and a healthy one, clearly they will not need me. at the same hours of the day.

Psychologist Corcuera has worked with families of children with serious diagnoses who live in Regions III and IV. In search of better treatment for their children, the mothers had to move with the patient to the capital. “I accompanied these mothers who had to leave their other children, without seeing them for months (…) When they were finally able to find each other, the calm of these mothers was absolute”, she recalls. In her experience, “there will be serious consequences if the ‘invisible child’ is not properly cared for and parents completely ignore. In these cases, they feel that they are less important”.

So that this does not happen, Maribel underlines the importance of strengthening the bond with them on a daily basis . For this, the psychologist affirms that it is crucial to accompany them in at least one of their daily tasks; when they wake up, at lunch or dinner time, help them take their bath, or even during video calls over very long distances . “ You have to take advantage of technology. Thanks to a video call, you can put a child to sleep or read him a story. So you have to try everything to be present in these moments of everyday life.

The psychologist also believes that it is crucial that children understand what is happening . “Given the stress of the diagnosis, they often don’t have time to explain to them or they don’t really understand what is going on. They might even feel like they did something wrong. , or that they stopped liking them. In early childhood, boys and girls are self-centered, they feel like everything is up to them,” he says. “Therefore, if they manage to understand everything that is going on and if they are well supported by the person who takes care of them, they should not be affected.”