There are things life forces you to learn

Reflections after the first Family Care Scholarship Day

There are things we learn because we want to, and others we learn because life leaves us no other choice.

On 2 August, we held the first Family Care Scholarship Day gathering at ROYAL SON BOU FAMILY CLUB.

The idea was simple: to bring together some of the families and organisations that have been part of this project over the past seven years, invite them to spend a day together at the hotel, and create a space where they could reconnect, share experiences and enjoy each other's company.

But the day turned out to be much more than that. It was also an opportunity to listen. And when you listen to certain stories, many things take on a different perspective.

Seven years of stories that stay with us

Since we launched the Family Care Scholarship, we have been fortunate enough to meet extraordinary families. Each with a different story. Each with their own difficulties, their own lessons and their own way of moving forward.

At this first gathering, we were joined by Martina and her family, connected to the AHUCE Foundation; Álvaro and his family, from the Fundació DeNeu; Jaume Riera and his family; and José Antonio Fayas and Maria José, from Sonrisa Médica.

During the day, I discovered something that particularly struck me.

Álvaro's, Jaume's and Martina's families already knew one another. Their children have different illnesses. They are part of different organisations. Their stories are not the same. And yet, their paths had already crossed.

Why? Because they had helped one another. A wheelchair that one family no longer needed and that could be useful to another. A piece of information. A contact. A recommendation. A shared experience. Small things that, in certain circumstances, are no longer small. 

This is how support networks are created, networks that those of us outside that reality often do not even know exist.

People who would probably never have met end up becoming part of one another's lives because they share something far stronger than a particular illness: they understand perfectly many of the difficulties the other family is going through.

When problems take on a different dimension

There was another thought that stayed with me throughout the day.

We often worry enormously about things in our everyday lives: the car breaking down, a flight delay, a problem at work, or anything else that does not go as we had planned. And, of course, when these things happen to us, they matter.

But listening to these families helps put certain concerns into a different perspective. Their concerns are different: wondering how their child’s condition will develop, whether a new treatment will become available, or whether they will be able to improve their quality of life.

It does not mean that our everyday problems cease to exist. But listening to certain stories does help us put them into perspective. And, above all, it helps us better understand what it means to live with uncertainty for years.

Parents who have had to learn medicine

One of the moments that struck me most came over coffee.

The conversation turned to genes, treatments and different aspects related to their illnesses.  I listened to them speak about these subjects with remarkable ease.  And I thought that probably none of them had ever imagined they would have to learn all of this.

They are neither doctors nor researchers.  They are parents.  But life forced them, in a way, to become specialists. They have had to read.  Ask questions. Research. Cross-check information. Learn scientific concepts. Understand medical reports. Look for alternatives.

Because when it comes to your child, you need to understand, you need to know, and you need to keep asking questions. That knowledge did not come from a vocation; it came from necessity.

Knocking on many doors until one opens

There was another subject that came up several times during our conversations.

All the doors they have had to knock on. The doors of hospitals, doctors and specialists. Seeking second opinions, and even third and fourth opinions.

Doctors who did not have answers, or whose answers were not enough, and others who, at some point, were able to open a small window of hope.

What struck me most was not simply how far they had travelled on this journey. It was their perseverance. Continuing to search when an answer does not come. Asking again. Travelling. Finding another specialist. Researching where work is being done on a particular disease. Not giving up.

Because some of these families have learned a reality that those of us fortunate enough not to need certain healthcare services tend to take for granted:
going into hospital does not necessarily mean going there to be cured.

Sometimes the goal is to improve quality of life, gain independence, reduce pain, slow the progression of a condition, buy time. Or to find a new option that allows hope to remain.

A scholarship that is teaching us too

When we created the Family Care Scholarship, our goal was to help. To support projects related to the protection of children and to make our own small contribution from ROYAL SON BOU FAMILY CLUB.

After seven years, gatherings like the one on 2 August make me think that the project is also working in the other direction.

They are helping us too. To learn, to put things into perspective, to listen more carefully, to understand the value of support networks, and to discover the importance of persevering when it seems that every door is closed.

And to remember that behind every project, every illness and every form of support, there is never simply a case file or a diagnosis.

There are people. There are children. There are families. There are stories that stay with us.

The first Family Care Scholarship Day was created to bring them together.

And it ended up reminding us why it is worth continuing to do so.