{"id":7311,"date":"2026-10-20T14:26:59","date_gmt":"2026-10-20T12:26:59","guid":{"rendered":"https:\/\/blog.insieme.ch\/?p=7311"},"modified":"2026-10-20T14:29:26","modified_gmt":"2026-10-20T12:29:26","slug":"trois-diagnostics-et-toute-une-vie-qui-va-avec","status":"publish","type":"post","link":"https:\/\/blog.insieme.ch\/fr\/famille\/trois-diagnostics-et-toute-une-vie-qui-va-avec\/","title":{"rendered":"Trois diagnostics et toute une vie qui va avec"},"content":{"rendered":"

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Merita <\/span>Musliu<\/span> est maman de trois gar\u00e7ons. Deux <\/span>d\u2019entre eux<\/span> vivent avec des handicaps diff\u00e9rents. Pour le blog <\/span>i<\/span>nsieme<\/span>, elle raconte ses exp\u00e9riences et partage ses r\u00e9flexions. Elle est \u00e9galement auteure et a publi\u00e9 le livre <\/span>(\u00ab  Wenn St\u00e4rke <\/span>drei<\/span> Namen <\/span>tr\u00e4gt<\/span>  \u00bb<\/span> (ndlr  : <\/span>\u00ab  Quand la force porte trois noms  \u00bb<\/span>).<\/span> Elle y d\u00e9crit le quotidien de sa famille, entre d\u00e9fis, espoir et amour.\u202f<\/span><\/span>\u202f<\/span><\/span><\/span><\/span><\/h4>\n

Je suis maman d\u2019un gar\u00e7on de 11 ans<\/span>. Il est<\/span> porteur de trisomie<\/span> 21<\/span>. Depuis peu, la maladie c\u0153liaque<\/span> (intol\u00e9rance au gluten)<\/span> fait \u00e9galement partie de notre quotidien, <\/span>tandis qu\u2019<\/span>une suspicion d\u2019autisme est venue s\u2019ajouter.\u202f\u202f<\/span><\/span>\u00a0<\/span><\/p>\n

E<\/span>n tant que parents, on ne peut pas simplement \u00ab  dig\u00e9rer  \u00bb<\/span> ce triple diagnostique<\/span>,<\/span> qui, contrairement \u00e0 une grippe ou un rhume, ne dispara<\/span>\u00eet<\/span> pas au bout de quelques jours.\u202f\u202f<\/span>Il <\/span>peu<\/span>t<\/span> accompagner un enfant tout au long de sa vie. Et m\u00eame si je sais que cela ne change rien \u00e0 <\/span>l\u2019identit\u00e9 de <\/span>mon fils, <\/span>que nous l\u2019aimons et le trouvons unique<\/span>, ces diagnostiques changent malgr\u00e9 <\/span>tout la vie<\/span> d\u2019une famille.\u202f\u202f\u202f<\/span><\/span>\u00a0<\/span><\/p>\n

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E<\/span>n tant que parents, on ne peut pas simplement \u00ab  dig\u00e9rer  \u00bb<\/span> ce triple diagnostique.<\/span><\/span><\/p>\n<\/blockquote><\/div>\n<\/p><\/div>\n<\/p><\/div>\n<\/p><\/div>\n<\/p><\/div>\n<\/p><\/div>\n<\/div>\n<\/div>\n


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Quand son propre enfant est malade, beaucoup de parents connaissent ce sentiment  : on aimerait soi<\/span>-m\u00eame<\/span> endurer les <\/span>sympt\u00f4mes<\/span> de son enfant<\/span>. On se dit  : \u00ab  Si seulement je pouvais lui \u00e9pargner ses douleurs. Si seulement je pouvais souffrir \u00e0 sa place, pour qu\u2019il n\u2019ait pas \u00e0 souffrir.<\/span>  \u00bb<\/span>\u202f<\/span><\/span>\u00a0<\/span><\/span><\/span><\/p>\n

Mais que se passe-t-il lorsque la maladie ne dispara\u00eet pas simplement  ?\u202fComment faire lorsque ce sont des diagnostiques avec lesquels il faut apprendre \u00e0 vivre et \u00e0 composer chaque jour  ?\u202f<\/span><\/span>\u00a0<\/span><\/p>\n

Alors un autre combat commence.\u202f<\/span>\u00a0<\/span><\/p>\n

Un combat que les personnes ext\u00e9rieures ne voient souvent pas.\u202f\u202f<\/span>\u00a0<\/span><\/p>\n<\/p><\/div>\n<\/p><\/div>\n<\/p><\/div>\n<\/p><\/div>\n<\/p><\/div>\n<\/p><\/div>\n<\/div>\n<\/div>\n


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Ce sont toutes ces petites choses du quotidien  : les rendez-vous m\u00e9dicaux, les examens, les inqui\u00e9tudes, les questions, les d\u00e9cisions. La peur de passer \u00e0 c\u00f4t\u00e9 de quelque chose, la question de savoir \u00e0 quoi ressemblera l\u2019avenir. Et parfois, tout simplement, l\u2019\u00e9puisement. Parce qu\u2019en tant que m\u00e8re, il faut sans cesse continuer \u00e0 avancer, m\u00eame lorsque, int\u00e9rieurement, on n\u2019a plus la force.\u202f\u202f<\/span><\/p>\n

Je crois que cette force est particuli\u00e8rement difficile \u00e0 d\u00e9crire pour les mamans d\u2019enfants en situation de handicap.\u202f<\/span>\u00a0<\/span><\/p>\n

Nous ne nous battons pas parce que nos enfants sont \u00ab  diff\u00e9rents  \u00bb et que nous voulons les changer.\u202f\u202f<\/span> \u00a0<\/span><\/p>\n

Nous nous battons <\/span>pour eux.<\/span><\/b>\u202f\u202f<\/span>\u00a0<\/span><\/p>\n

Nous nous battons pour qu\u2019ils soient compris. Pour qu\u2019ils trouvent leur place dans ce monde. Pour que les gens ne s\u2019arr\u00eatent pas \u00e0 leur diagnostic, mais voient l\u2019enfant qui se cache derri\u00e8re.\u202f\u202f\u202f<\/span>\u00a0<\/span><\/p>\n

Et, parfois, nous nous battons aussi tout simplement pour que notre enfant passe une bonne journ\u00e9e.\u202f\u202f<\/span>\u00a0<\/span><\/p>\n<\/p><\/div>\n<\/p><\/div>\n<\/p><\/div>\n<\/p><\/div>\n<\/p><\/div>\n<\/p><\/div>\n<\/div>\n<\/div>\n


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\n\t\t\t\t\t\t\t\"Merita
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Nous nous battons pour que les gens ne s\u2019arr\u00eatent pas \u00e0 leur diagnostic, mais voient l\u2019enfant qui se cache derri\u00e8re.\u202f\u202f\u202f\u00a0<\/p>\n

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\n\t\t\t\t\t\t\t\tMerita Musliu<\/span>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/cite>\n\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n<\/blockquote><\/div>\n<\/p><\/div>\n<\/p><\/div>\n<\/p><\/div>\n<\/div>\n<\/div>\n


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En tant que maman d\u2019un enfant en situation de handicap, on d\u00e9veloppe une force dont on ne soup\u00e7onnait peut-\u00eatre m\u00eame pas l\u2019existence.\u202f\u202f<\/span>\u00a0<\/span><\/p>\n

Mais cette force ne signifie pas qu\u2019on ne pleure jamais.\u202f<\/span>\u00a0<\/span><\/p>\n

Elle ne signifie pas qu\u2019on est toujours fort.\u202f\u202f<\/span>\u00a0<\/span><\/p>\n

Elle ne signifie pas non plus qu\u2019on n\u2019a pas peur.\u202f\u202f<\/span>\u00a0<\/span><\/p>\n

Parfois, \u00eatre fort, c\u2019est simplement se relever le lendemain matin et continuer \u00e0 avancer, m\u00eame si on a pleur\u00e9 la veille au soir.\u202f\u202f<\/span>\u00a0<\/span><\/p>\n

Parce que nos enfants n\u2019ont pas besoin d\u2019une maman parfaite.\u202f\u202f<\/span>\u00a0<\/span><\/p>\n

Ils ont besoin d\u2019une maman qui les aime, qui est l\u00e0 pour eux et qui se rel\u00e8ve encore et encore.\u202f\u202f<\/span>\u00a0<\/span><\/p>\n

Et c\u2019est ce que nous essayons de faire chaque jour.\u202f\u202f<\/span>\u00a0<\/span><\/p>\n<\/p><\/div>\n<\/p><\/div>\n<\/p><\/div>\n<\/p><\/div>\n<\/p><\/div>\n<\/p><\/div>\n<\/div>\n<\/div>\n


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Parce que nos enfants n\u2019ont pas besoin d\u2019une maman parfaite.\u202f\u202f<\/span>\u00a0<\/span>Ils ont besoin d\u2019une maman qui les aime, qui est l\u00e0 pour eux et qui se rel\u00e8ve encore et encore.\u202f<\/span><\/h4>\n<\/blockquote><\/div>\n<\/p><\/div>\n<\/p><\/div>\n<\/p><\/div>\n<\/p><\/div>\n<\/p><\/div>\n<\/div>\n<\/div>\n

<\/p>\n","protected":false},"excerpt":{"rendered":"

Merita Musliu est maman de trois gar\u00e7ons, dont deux vivent avec un handicap. Elle partage son quotidien, ses d\u00e9fis et la force qu\u2019elle trouve chaque jour dans l\u2019amour de ses enfants.<\/p>\n","protected":false},"author":48,"featured_media":7326,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[22,16,17],"tags":[53,56,79,80],"class_list":["post-7311","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-famille","category-handicap-mental","category-inclusion","tag-enfant","tag-integration","tag-proches-aidants","tag-soutien","wp-sticky"],"acf":[],"yoast_head":"\nTrois diagnostics et toute une vie qui va avec<\/title>\n<meta name=\"description\" content=\"Merita Musliu raconte son quotidien de maman face au handicap, entre d\u00e9fis, inqui\u00e9tudes, amour et force pour accompagner ses enfants.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, 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