Non voglio insegnare nulla a nessuno, ne ho i titoli per farlo, semplicemente vi voglio raccontare la nostra esperienza, nella speranza che possa essere d’aiuto a qualcuno per affrontare più serenamente questa straordinaria avventura di vita, molto impegnativa , ma anche molto significativa che mi ha fatto crescere come persona, come donna e come madre .
Non si è mai pronti a diventare genitori , figuriamoci poi di un figlio con handicap. È una vita riscritta dal principio alla fine .
Intanto is spent, we spent a long time to realize what had happened to us, delays in growth in comparison to the eldest daughter, the reassurance of the doctors, the journeys of hope, then the acceptance of reality, that does not mean resignation, but he had finally taken into consideration that there are serious problems. They are often mothers who take the initiatives, which usually are the possible solutions, which in our case, unfortunately, are not coming, for many of you now, there are many more opportunities for rehabilitation and your children will have access to many more opportunities, not always be decisive, but it's worth to try ..
If you have other children is even more difficult to be parents calm, constructive and comprehensive, it is difficult to smile to a child when the other is in the other room that suffers from the illness or its limits, there are many diseases that cause severe disability and whether they are from genetic, metabolic, trauma from childbirth, an accident we will be called upon to help their brothers and sisters still live their lives peacefully and happily if possible.
We try not to overwhelm the little brothers and sisters by the tsunami that swept through our lives as parents, following the birth of a child with special needs!
We have done so with the first daughter, Cristina, which inevitably had the revolutionized lives since the birth of Claudia. My husband and I were very young and careless, full of hopes, so we joined in this journey of understanding and acceptance of the situation. Cristina I left with my father or uncles to bring some of Claudia doctor abroad who could help her and she looked like, sweet and thoughtful girl, until much later told me how He suffered for my absence, I was lucky because this had no impact on his affection for me as a mother or sister for that.
So today I say to parents: try, try, go, but do not let the other children at home or if you have to use it for a short time.
Con il più piccolo, Mirko, è stato molto più facile , lui è arrivato che Claudia aveva 14 anni ed è stato lui a doversi adeguare alle esigenze familiari dettate dalla presenza di una persona con grave disabilità sempre in evoluzione.
Li abbiamo fatti “incontrare” subito, il piccolo aveva 2 mesi e già stava a pavimento per poter interagire con la sorella che stava molto tempo a tappeto per la fisioterapia e per potersi muovere, se ne avesse avuto possibilità o necessità, senza pericolo, ampliare gli orizzonti ,come ci era stato detto e il letto o la carrozzina erano troppo limitativi; lui strisciava fino a lei e lei sorrideva felice, ancora oggi come vede o sente il fratello Claudia sorride.
We have bent over backwards to be able to meet the needs and inclinations of each. For the first daughter, Cristina, I went with Claudia to accompany her to the theater in the early afternoon after school to dance and then I went and she went and grandparents, the father after work and then went to get Cristina to pick us and then all at home, but were often still 8 in the evening with homework to do, but dance was her world at that time, we thought that if he had lived he might interest the situation better and I think I made the right choice .
often accompanied the pope to the shows while I was at home with Claudia, we found a balance that allowed Christina to live His first experience outside the school and the family encounters and clashes with the surrounding world, with the defeats and victories that any child encounters;
certainly has matured much earlier than his peers because we could not eliminate all the obvious difficulties such as hospitalization necessary to Claudia that took away my mother for a while 'time, but treated well because, in turn, when it had to be hospitalized for appendicitis and tonsils the place of his mother was near her.
Knowing this has made it clear that there was no difference, that his sister had no monopoly of affection, but love parents by magic instead of divide by 2 multiplied and none of the two would face a difficult time without her mother around.
This has made sure of himself. Sometimes
dedicated one day only to her, alone or together with daddy, and that day was just for her, it was a moment of relaxation, stress removal, we reloaded. I think being able to balance the needs of all is not easy, but we can do, the important thing is respect for each space, respect for individual inclinations, the absolute involvement of the parents for things that seem superfluous but if they are important to them then it must become for us and if we add all the love che proviamo per ognuna di queste nostre creature indipendentemente dalle loro condizioni di salute, allora saremo riusciti a essere genitori completi.
Con il fratello più piccolo la strada è stata più semplice, avevamo l’esperienza , l’età e la possibilità di essere più presenti , il percorso di diagnosi e riabilitazione era ormai stabilizzato , avevamo imparato a essere più sicuri di noi come genitori, eravamo più informati e questo ci ha permesso , credo, di affrontare questo nuovo miracolo della genitorialità con più serenità.
Anche in questo caso abbiamo ritenuto fosse importante per il bambino avere degli interessi extrascolastici che lo aiutassero a confrontarsi con gli altri, ad aprirsi e inserirsi nel gruppo e con il gruppo, di lui hanno detto < è un leader, ma un leader positivo > e ha sempre visto la presenza di Claudia non come un impedimento alla sua realizzazione ma a un complemento della sua personalità."
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