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Thank you for your Smiles

Reviewed by Sylvia Irvine-Robertson

Following the loss of her son, Jon in 2018, Susana decided to write a book, partly as a tribute, partly as a therapy and partly to share her experience of her fight to obtain the best possible scenario for her disabled child.

Jon was born in Spain in 1977, premature and contracted meningitis in an incubator. Susana and his Spanish father talked to him in English and Spanish but by the age of two he had no speech, prompting his parents to seek professional advice, Jon was diagnosed with deep bilateral sensorineural deafness but otherwise was developing as a normal child.

Susana describes the difficulty in finding a suitable education for Jon, given that sign language was not accepted in Spain at the time and this was Jon’s only means of communication. She faced much bureaucracy and opposition, but never accepted defeat.

Unfortunately, Jon’s meningitis had caused more health issues than initially thought. It became apparent that he had learning difficulties; suffered epilepsy was prone to bronchitis and pneumonia. He weathered all these setbacks, but sadly, age 40, he was diagnosed with colon cancer and died a short time after his 41st birthday.

Although Jon had communication and comprehension issues, his personality won the hearts of many, always smiling and never complaining.

Anyone who has experience of caring for a disabled son or daughter will know that after formal education ends, new challenges present themselves. Susana understood Jon’s frustration as a young man and worked tirelessly to help him achieve his potential. Through Occupational Centres and later on a Residence, Jon much enjoyed the social and leisure activities and discovered a gift for painting.

Many of you will find a resonance in Susana’s determination to find a way through the system, whilst working full time and on her own when Jon was in his twenties, having separated from her husband.

They had another son, Urko, whose empathy and understanding of Jon’s difficulties is wonderful to witness. He engaged with Jon, provided support and following his death, listed so much he had personally gained from the relationship with his brother. It is a testimony to Susana’s ability to relate to family and friends that everyone within her circle was supportive throughout and following Jon’s death.

Susana had given so much of her life and herself that it is not surprising that the loss of Jon left a huge void and understandably, her own health suffered. It takes time to grieve and adjust but that is what she has done in her own way and found a path forward. It has not been easy and she is very open about the process.

Disclaimer: Any views or opinions represented in this blog are personal and belong solely to the blog owner and do not represent those of Hearing Link Services or Hearing Dogs for Deaf People unless explicitly stated.

SylviaSylvia had a career in language teaching prior to suffering sudden sensorineural hearing loss (SSHL) over 10 years ago. Since then she has worked as a volunteer with RNID to improve communication with GP practices for patients with hearing loss and promote lipreading skills. Over the past few years, she has been a volunteer for the Hearing Link Helpdesk and written articles to raise awareness of the impact of hearing loss on everyday life.