{"id":6076,"date":"2019-04-29T10:21:00","date_gmt":"2019-04-29T17:21:00","guid":{"rendered":"https:\/\/raisingspecialkids.net\/?p=6076"},"modified":"2025-02-04T10:51:33","modified_gmt":"2025-02-04T17:51:33","slug":"we-were-really-shocked-and-didnt-know-what-to-do","status":"publish","type":"post","link":"https:\/\/raisingspecialkids.net\/es\/2019\/04\/29\/we-were-really-shocked-and-didnt-know-what-to-do\/","title":{"rendered":"Finding Strength in the Unexpected"},"content":{"rendered":"\n
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The night their lives changed course, Brittany Miller and her husband Ryan were settling into life with three daughters, having welcomed tiny Brooke just five weeks earlier. During one of their first family outings with their baby, Brooke began having seizures. Once at the hospital, Brittany and Ryan quickly found themselves in an emergency consultation with the neurologist on-call. That neurologist diagnosed Brooke with Aicardi syndrome, an extremely rare genetic disorder.<\/p>\n\n\n\n

Recalling the two weeks they spent in the hospital with Brooke following her diagnosis Brittany shared, \u201cI had 5 year old, a 2\u00bd-year-old and a baby with all these needs. We were really shocked and didn\u2019t know what to do.\u201d Among the information Brittany was provided by her hospital social worker was a flier for Raising Special Kids, but for her, it was just not the right time to connect. \u201cHer first year was very scary. We weren\u2019t sure she was going to make it. She was having hundreds of seizures a day. It was just very stressful!\u201d <\/p>\n\n\n\n

A couple of years later, Brittany attended a Raising Special Kids presentation on transitioning from AzEIP to preschool. She was impressed with the quality of the information she received. \u201cEven though it was only preschool, Brooke had a lot going on! Raising Special Kids gave me the right language I needed to advocate for her. It made me feel empowered when I went to the IEP meeting.\u201d<\/p>\n\n\n\n

Once Brooke was in preschool, Brittany began connecting with other moms of children with special needs on Facebook and joined the family advisory group at the hospital where Brooke receives care. Brittany attended an IEP training at Raising Special Kids with some of the moms from her Facebook group and once again, she was impressed. Soon, Brittany became a Parent Leader at Raising Special Kids, helping other families whose children have diagnoses similar to Aicardi syndrome. \u201cI still connect with a lot of the parents I\u2019ve spoken with as a Parent Leader. It\u2019s so interesting how my life has turned out because I have a child with a disability. I\u2019ve met so many people I would never have met. It\u2019s pretty cool.\u201d <\/p>\n\n\n\n

Often, people tell Brittany, \u201cI don\u2019t know how you do it.\u201d Brittany just replies, \u201cYou would do it too because you love your kids.\u00bb Brittany adds, \u201cI definitely have my own anxiety and stresses dealing with life but we still try to do the busy happy family life. We just have these medical things that come up. We\u2019ve come a long way as a family. My girls Juliette and Audrey are wonderful with Brooke. They\u2019ve learned a lot being special needs siblings. It has changed us in ways that are good. We know we won\u2019t have Brooke forever so we cherish the time we do have with her.<\/p>\n","protected":false},"excerpt":{"rendered":"

The night their lives changed course, Brittany Miller and her husband Ryan were settling into life with three daughters, having welcomed tiny Brooke just five weeks earlier. During one of their first family outings with their baby, Brooke began having seizures.<\/p>\n","protected":false},"author":6,"featured_media":9567,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_uag_custom_page_level_css":"","site-sidebar-layout":"default","site-content-layout":"default","ast-site-content-layout":"default","site-content-style":"default","site-sidebar-style":"default","ast-global-header-display":"","ast-banner-title-visibility":"","ast-main-header-display":"","ast-hfb-above-header-display":"","ast-hfb-below-header-display":"","ast-hfb-mobile-header-display":"","site-post-title":"","ast-breadcrumbs-content":"","ast-featured-img":"disabled","footer-sml-layout":"","ast-disable-related-posts":"","theme-transparent-header-meta":"default","adv-header-id-meta":"","stick-header-meta":"default","header-above-stick-meta":"","header-main-stick-meta":"","header-below-stick-meta":"","astra-migrate-meta-layouts":"set","ast-page-background-enabled":"default","ast-page-background-meta":{"desktop":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"ast-content-background-meta":{"desktop":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"footnotes":""},"categories":[6],"tags":[28,153,168,147],"class_list":["post-6076","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-family-stories","tag-advocacy","tag-connecting-newsletter","tag-epilepsy","tag-medically-complex"],"uagb_featured_image_src":{"full":["https:\/\/raisingspecialkids.net\/wp-content\/uploads\/2019\/04\/Miller-2023-3-scaled.jpg",2560,1661,false],"thumbnail":["https:\/\/raisingspecialkids.net\/wp-content\/uploads\/2019\/04\/Miller-2023-3-150x150.jpg",150,150,true],"medium":["https:\/\/raisingspecialkids.net\/wp-content\/uploads\/2019\/04\/Miller-2023-3-300x195.jpg",300,195,true],"medium_large":["https:\/\/raisingspecialkids.net\/wp-content\/uploads\/2019\/04\/Miller-2023-3-768x512.jpg",768,512,true],"large":["https:\/\/raisingspecialkids.net\/wp-content\/uploads\/2019\/04\/Miller-2023-3-1024x664.jpg",1024,664,true],"1536x1536":["https:\/\/raisingspecialkids.net\/wp-content\/uploads\/2019\/04\/Miller-2023-3-1536x996.jpg",1536,996,true],"2048x2048":["https:\/\/raisingspecialkids.net\/wp-content\/uploads\/2019\/04\/Miller-2023-3-2048x1328.jpg",2048,1328,true],"post-grid-thumbnail":["https:\/\/raisingspecialkids.net\/wp-content\/uploads\/2019\/04\/Miller-2023-3-300x200.jpg",300,200,true]},"uagb_author_info":{"display_name":"Maureen Mills","author_link":"https:\/\/raisingspecialkids.net\/es\/author\/maureenm\/"},"uagb_comment_info":0,"uagb_excerpt":"The night their lives changed course, Brittany Miller and her husband Ryan were settling into life with three daughters, having welcomed tiny Brooke just five weeks earlier. During one of their first family outings with their baby, Brooke began having seizures.","_links":{"self":[{"href":"https:\/\/raisingspecialkids.net\/es\/wp-json\/wp\/v2\/posts\/6076","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/raisingspecialkids.net\/es\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/raisingspecialkids.net\/es\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/raisingspecialkids.net\/es\/wp-json\/wp\/v2\/users\/6"}],"replies":[{"embeddable":true,"href":"https:\/\/raisingspecialkids.net\/es\/wp-json\/wp\/v2\/comments?post=6076"}],"version-history":[{"count":6,"href":"https:\/\/raisingspecialkids.net\/es\/wp-json\/wp\/v2\/posts\/6076\/revisions"}],"predecessor-version":[{"id":11104,"href":"https:\/\/raisingspecialkids.net\/es\/wp-json\/wp\/v2\/posts\/6076\/revisions\/11104"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/raisingspecialkids.net\/es\/wp-json\/wp\/v2\/media\/9567"}],"wp:attachment":[{"href":"https:\/\/raisingspecialkids.net\/es\/wp-json\/wp\/v2\/media?parent=6076"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/raisingspecialkids.net\/es\/wp-json\/wp\/v2\/categories?post=6076"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/raisingspecialkids.net\/es\/wp-json\/wp\/v2\/tags?post=6076"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}