Ainara is five years old and has many thousands of followers on social media.
Her mother Erika explains that the idea of creating an account for Ainara arose both to give visibility to rare diseases and disabilities, and for people to see that Ainara – as well as many girls and boys with multi-disability – are not ‘poor’: as well as having a family that cares for them, they strive, get tired, get frustrated, enjoy, laugh and are happy, just like us and just like other children.
When Ainara was born, she spent five months in the hospital.
The value of social media as an accompanying tool when the vulnerability of our sons and daughters forces us to be at home or in prolonged hospitalization periods, is a positive thing because it helps to connect, share, learn and above all to know that even if we have to spend days or months in several confinements, there are more people who care about the lives of our daughters and sons.
Social media as a pedagogical, informative and empathetic tool, can be very effective. It is useful to generate social action (through campaigns to search for blood donors, equipment, financial funds, etc.). It may help disclose different therapies, therapists, medication or orthopedic material based on the experience of the same people who know and make use of these services and/or resources.
On the other hand, they make us feel that we can be accompanied, when we often take care of our children spending far too many hours in loneliness.
Raising and caring for our daughters and sons with health challenges and high demand for care, leads us to build symbiotic relationships with them. In many situations, their wellbeing depends on the personalized attention we provide for them – and that makes the decision to delegate their care to third parties very difficult.
“Sometimes it happens that you wake up in a slump and that day everything is a struggle, but the truth is when Ainara has to go to school, it will be very hard for me. Ainara nourishes me. She’s good at everything. She has made us see everything differently. She makes us laugh a lot every day. The best thing about being her mom? Being with her, learning from her and above all, when she feels good, seeing her smile.” -Erika