{"id":133,"date":"2026-04-05T09:00:00","date_gmt":"2026-04-05T09:00:00","guid":{"rendered":"https:\/\/cota.org\/cotaforlilyslight\/?p=133"},"modified":"2026-06-16T03:40:18","modified_gmt":"2026-06-16T03:40:18","slug":"holidays-with-a-medically-fragile-child","status":"publish","type":"post","link":"https:\/\/cota.org\/cotaforlilyslight\/2026\/04\/05\/holidays-with-a-medically-fragile-child\/","title":{"rendered":"Holidays with a Medically Fragile\u00a0Child"},"content":{"rendered":"\n
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Lily was born on November 11. She spent four and a half months in the ICN. That means that she spent her first Thanksgiving, Christmas, New Years, and Valentine\u2019s Day in the hospital. Days that we were separated from her or our other kids for large parts of the day. She also spent her first Halloween and birthday in the hospital. Because of all of that, holidays and special events honestly make me nervous. It seems like our special occasions are always marred by a hospital stay. <\/p>\n\n\n\n

One thing I will say about our hospital holidays is that the staff makes the most of a bad situation. We were given presents for each of our children for Christmas. There were musical events. She received a birthday present from the Family Life staff and the nurses came to sing to her. Family House did it up even bigger. Every holiday brought treats and goodies and gifts. We even met Barry Bonds and were on the news. It made the days sweeter but didn\u2019t completely dull the ache of being in such a terrible situation. <\/p>\n\n\n\n

Easter was Lily\u2019s first holiday at home. Now we celebrated her second Easter at home. It is beautiful to get to spend the holidays with our whole family but we can never quite forget that our daughter is medically fragile. We still have g tube feedings and cleaning up throw up and setting up dialysis. As normal as we might look on the outside, we definitely are not normal on the inside. So the days leading up to the holidays, I hold my breath and hope to God that she stays healthy so that we can enjoy our time together.<\/p>\n\n\n\n

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Lily was born on November 11. She spent four and a half months in the ICN. That means that she spent her first Thanksgiving, Christmas, New Years, and Valentine\u2019s Day in the hospital. Days that we were separated from her or our other kids for large parts of the day. She also spent her first […]<\/p>\n","protected":false},"author":2546,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-133","post","type-post","status-publish","format-standard","hentry"],"acf":[],"yoast_head":"\nHolidays with a Medically Fragile\u00a0Child - COTA for Lily's Light<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/cota.org\/cotaforlilyslight\/2026\/04\/05\/holidays-with-a-medically-fragile-child\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Holidays with a Medically Fragile\u00a0Child\" \/>\n<meta property=\"og:description\" content=\"Lily was born on November 11. She spent four and a half months in the ICN. 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