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Marina Cometto – a mother’s unconditional love

 Street News Service 21 February 2019

Marina Cometto is a very committed and determined woman, wife and mother. She worked since she was 15 years old until the birth of her second child Claudia, who was seriously disabled due to complications during birth. (1208 Words) - By Staff Writer

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Petali Rossi_ Marina

 Photo: Claudia and her mother Marina Cometto. Photo courtesy of Petali Rossi

Marina founded the Claudia Bottigelli not for profit association and joined "H Mothers" group, a team of women who have seriously disabled children. She writes on the blog www.disabili.com ("Tell Marina" column) and, since last month, on www.disabili.com/blog/una-storia-impossibile (Disabled people, an impossible story).

Q: What does it mean to have a seriously disabled daughter?

A: No one is really ready to become mother or father. Being a parent of a seriously disabled child means to have to face a lot of difficulties.

When Claudia was born 37 years ago, my husband and I were really alone and isolated. It was almost impossible to be in touch with other families like ours, to share experiences and doubts. Today it is easier thanks to the web, websites and social networks.

At that time everything fell to us. And everything we did for Claudia and the other children was the result of our intuitions and decisions.

Q: Were you able to dedicate yourselves to the other children too?

A: Yes, we were. We abstained from giving them responsibility for Claudia.

We wanted they felt like the other children. We took care of them so that they were conscious that Claudia's presence didn't deprive them of our care and love.

My husband achieved the impossible to take the eldest daughter to the ballet school. And he did the same to take our youngest son to sport school. Our children were able to do everything their friends did.

I don't see other families behave like us. Maybe today's people are weaker than us. Maybe I'm so strong because when I was 15 years old I already worked and at 18 years old I was married.

Q: How is your typical day?

A: We live in the present. My day is 24 hours long.

Q: Do you sleep?

A: I sleep 3-4 hours a night, particularly at the moment. I always ever afraid of not getting to Claudia in time, in case she needs my help. I am used to sleeping with only one eye and one ear closed, to hear Claudia's breathing. As soon as I hear something unusual, I run to her.

Q: How can you communicate with Claudia?

A: I look at her eyes. Claudia is like new-born. She expresses herself by smiling and crying.

To me it has always been fundamental to create a relationship with her. Claudia's eyes tell me she feels peaceful and loved.

Q: How much does a seriously disabled child cost?

A: They have a lot of needs.

When Claudia was born I stopped work and this was a cost, because my family's income notably decreased.

For 37 years my daughter has eaten two packs of Nipiol biscuits a day, because they melt quickly and they are fat free. When she has a cough and finds it difficult to swallow, she eats baby foods and they are very expensive, as every mother knows. The Italian welfare system offers us incontinence pads and the standard aids, but it's often a problem to get other innovative aids free. At the moment, for example, I'm fighting to get a special bed with the edge made of plexi-glass and without barriers, where Claudia risks trapping her legs and arms.

Q: You are fighting for Claudia's rights and, in the meantime, for all seriously disabled people's rights. How far away is the goal?

A: First of all, when I created the Claudia Bottigelli association I didn't do it for her sake, but to testify of her existence on this earth.

It was and still it is a campaigning organisation, and it has allowed me to get in touch with many parents with seriously disabled children.

One of my favourite expressions is: "I don't want to receive anything out of pity that I have the right to receive". I wrote many letters to the politicians and important people in order to get their attention on these topics and on the rights that were ratified by the Italian and European Constitution and by the UN Convention. I haven't received any answers, but I don't give up. Everybody has to know that all the family is involved when disability affects a child.

And everybody has to know not all the disabilities are the same. People with cognitive and physical disability require much more attention: they are like new-borns and we have to completely take care of them.

I wrote a letter to women who are politically involved. After many years I've been recently welcomed by the Italian Minister of the Equal Opportunities Mara Carfagna, together with some mothers of the "H Mothers" group.

Q: What do you do with "H Mothers"?

A: We raise awareness about disability, we do projects and make equal opportunities' requests.

We ask for equal opportunities at work through flexible office hours, respect for workers' laws and licences.

We ask for suitable help that allows mothers to have free meals and facilities to wash and change their clothes while they are staying in hospital with their children.

We ask that mothers and families are given the chance to take care of their children at home, without being forced to hospitalize them because of political rulings. The priority is

to have the chance to take care of seriously disabled children at home.

We ask for the chance to have free time and to be able to count on someone really expert and professional to assist our children during our absence.

We ask for a real life. We want our rights will be respected. And we don't want to have to fight all our life long in order for our rights will be respected.

Q: What does "H Mothers" mean?

A: The "H" stands for "handicap". We have to overcome one more handicap than others parents. It "H" stands for hours too, because we are busy 24 hours a day. We close only one eye and one ear when we sleep, because we always have to be vigilant.

Q: What word should you give "H Mothers" and all women?

A: I give "H Mothers" the word "hope". The hope of overcoming all the difficult times. I tell women and men "Love yourselves". Be aware of your value and the fact you are the most important thing for you. If someone doesn't love himself, he's not able to do anything for his own and the others sake.

Q: What has Claudia taught you?

A: Claudia has taught me it's not important to have the best of everything, but to get the best from everything we have. The really important things are the little ones. To me Claudia has been an opportunity to grow as person, woman and mother.

Please credit article as follows:

Originally published by Petali Rossi © www.streetnewsservice.org

 

Petali Rossi is a blog aimed at promoting women's values, dialogue and experience sharing. The Red Petals are women. They are teachers, doctors, journalists, NGO workers, educators, cultural mediators, nurses, midwives, volunteers, lawyers… Whatever their job, they all have one thing in common: they work to protect the rights of both children and adults, in Italy and abroad.

Photo: Claudia and her mother Marina Cometto. Photo courtesy of Petali Rossi

 

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