{"id":246,"date":"2025-03-10T00:03:12","date_gmt":"2025-03-10T00:03:12","guid":{"rendered":"https:\/\/cota.org\/cotaforteamham\/?p=246"},"modified":"2025-04-02T13:27:57","modified_gmt":"2025-04-02T13:27:57","slug":"all-that-glitters","status":"publish","type":"post","link":"https:\/\/cota.org\/cotaforteamham\/2025\/03\/10\/all-that-glitters\/","title":{"rendered":"All That Glitters"},"content":{"rendered":"\n<h2 class=\"wp-block-heading\" id=\"h-join-the-beat\">Join the Beat<\/h2>\n\n\n\n<p>Hello family and friends! First, THANK YOU! The shirt sales were a great success, raising over $1,200 for COTA for Team Ham! We LOVE receiving the photos of you in your shirts. Please keep them coming! We cannot express how grateful we are for COTA and their support to help meet the transplant-related needs of Kya and Eli. We are especially thankful that this program will support their transplant-related needs throughout their lifetime. <strong><em>Your thoughtfulness and generosity make it possible. <\/em><\/strong>We look forward to sharing future events and opportunities as we continue working toward our COTA fundraising goal. If you missed out on ordering a shirt, we will reopen sales later this year if there is enough interest, so stay tuned! Please keep sharing our blog and contributions can be made on the <a href=\"https:\/\/cota.org\/cotaforteamham\/our-story\/\" target=\"_blank\" rel=\"noreferrer noopener\">COTA for Team Ham page.<\/a><\/p>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"h-all-that-glitters\">All That Glitters<\/h2>\n\n\n\n<p>After many medical appointments, we got busy catching up on life and our update has been delayed longer than planned. I\u2019m a bit in my \u2018feels\u2019 today, so I hope you don\u2019t mind some nostalgia and hard truths. I generally keep these shoved in a closet, but they eventually burst out all over the place (just ask Eric), and like glitter, they stick on everything. Let\u2019s see what\u2019s in this closet of mine\u2026<\/p>\n\n\n\n<p>When I was in elementary school I loved to read. I had a bookmark that was my absolute favorite: It had a rainbow on it with a pot of gold and the caption said: \u201cAll that glitters is not gold.\u201d It\u2019s funny how little memories stick with you for a lifetime. I didn\u2019t really know what it meant, but it has some meaning to me now\u2026<\/p>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"h-open-my-closet\">Open My Closet<\/h3>\n\n\n\n<p>Before getting to the medical update, I\u2019m going to share some \u2018glitter\u2019 by noting a few moments:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Sitting in the doctor\u2019s office with my child, watching the fear and heartache well up and spill down their cheeks.<\/li>\n\n\n\n<li>Discussing end-of-life issues, like funeral arrangements and who they want their belongings to go to.<\/li>\n\n\n\n<li>Completing advanced directives and discussing health care wishes.<\/li>\n\n\n\n<li>Feeling utterly powerless to shield them from so much heartache, worry, and pain.<\/li>\n\n\n\n<li>Trying to respect their autonomy and decision-making rights as young adults while also knowing they are still learning and these decisions are impossibly complicated and hard.<\/li>\n\n\n\n<li>Giving them space while also wanting to hold them close (and never let go).<\/li>\n\n\n\n<li>Reconciling the nagging and devastating reality of worst-case scenarios.<\/li>\n\n\n\n<li>Grieving their loss of an \u2018ordinary\u2019 young adult life experience, one that we wanted to be filled only with hope, excitement, and anticipation of a beautiful future.<\/li>\n\n\n\n<li>More grieving.<\/li>\n\n\n\n<li>Then feeling guilty about grieving because we should be celebrating every day we have together.<\/li>\n<\/ul>\n\n\n\n<p>Anger, fear, loss, letting go, holding on, grief, rage, heartbreak\u2026it\u2019s all SO HEAVY. Thank you for letting me air out some feelings. I hope you don\u2019t mind the \u2018glitter\u2019.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"h-medical-update\">Medical Update<\/h3>\n\n\n\n<p>When I last wrote, we were in the process of Eli\u2019s evaluation for transferring to the adult transplant list. Like many of our medical adventures, this was also an emotional roller coaster with twists and turns. The good news is that Eli is doing somewhat better, likely attributable to getting more rest with his current schedule. At this time, Eli will continue on the heart transplant list. This is the best opportunity of receiving a heart transplant before, you know, the worst case scenario. (I\u2019m tired of saying \u2018worst case scenario\u2019. I need a different phrase, maybe a nickname of sorts. Any suggestions?) A variety of circumstances could change Eli\u2019s status, but all things remaining, the wait could be two years.<\/p>\n\n\n\n<p>Kya continues to see the heart failure team and get regular symptom management. Her symptoms present significant challenges to her daily life, which are frustrating for her. Unfortunately, despite her need, being listed for transplant is not an option at this time. You may recall, there is a long and complicated list of criteria for a transplant. This worries us, but we take it a day at a time.<\/p>\n\n\n\n<p>Something we have come to understand is how differently ARVC is presenting in Kya versus Eli. It is only natural to compare the two, but as the doctor has explained, Kya\u2019s presentation of heart failure symptoms is more \u2018traditional\u2019. You might say that we can see it coming, at least to a degree. Eli\u2019s disease presentation is unpredictable, and he\u2019s more likely to experience a sudden event, going from okay to very bad without much warning.<\/p>\n\n\n\n<p>So as for March of 2025, we continue waiting for a transplant phone call that could change everything in a heartbeat (pun \ud83d\ude0a) and send us to the hospital for a different phase of this journey. We also know that other phone calls and situations can arise, and the \u2018worst-case-scenarios\u2019 (there it is again) are always tugging at this mamma\u2019s heart.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"h-sparkle-on\">Sparkle On<\/h3>\n\n\n\n<p>I think feelings, nostalgia, and heart transplants are glitter and not gold &#8211; not always positive or exposing a \u2018silver lining,\u2019 but they are important, capturing our attention, and stick all over things. I don\u2019t know exactly what Shakespeare intended when he wrote \u201cAll that glitters is not gold\u201d, but you are glitter and gold! Thank you for sticking to us! Sparkle on, friends.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"h-happy-st-patrick-s-day\">Happy St. Patrick&#8217;s Day!<\/h2>\n\n\n\n<figure class=\"wp-block-gallery has-nested-images columns-default is-cropped wp-block-gallery-1 is-layout-flex wp-block-gallery-is-layout-flex\">\n<figure class=\"wp-block-image size-large is-resized\"><img loading=\"lazy\" decoding=\"async\" width=\"534\" height=\"683\" data-id=\"248\" src=\"https:\/\/cota.org\/cotaforteamham\/wp-content\/uploads\/sites\/6381\/2025\/03\/St-Pats-2016-Kya-and-parents.jpg\" alt=\"\" class=\"wp-image-248\" style=\"width:232px;height:auto\" srcset=\"https:\/\/cota.org\/cotaforteamham\/wp-content\/uploads\/sites\/6381\/2025\/03\/St-Pats-2016-Kya-and-parents.jpg 534w, https:\/\/cota.org\/cotaforteamham\/wp-content\/uploads\/sites\/6381\/2025\/03\/St-Pats-2016-Kya-and-parents-235x300.jpg 235w\" sizes=\"auto, (max-width: 534px) 100vw, 534px\" \/><figcaption class=\"wp-element-caption\">St Pat&#8217;s 2016<\/figcaption><\/figure>\n\n\n\n<figure class=\"wp-block-image size-large is-resized\"><img loading=\"lazy\" decoding=\"async\" width=\"520\" height=\"501\" data-id=\"249\" src=\"https:\/\/cota.org\/cotaforteamham\/wp-content\/uploads\/sites\/6381\/2025\/03\/St-Pats-2025.jpg\" alt=\"\" class=\"wp-image-249\" style=\"width:260px;height:auto\" srcset=\"https:\/\/cota.org\/cotaforteamham\/wp-content\/uploads\/sites\/6381\/2025\/03\/St-Pats-2025.jpg 520w, https:\/\/cota.org\/cotaforteamham\/wp-content\/uploads\/sites\/6381\/2025\/03\/St-Pats-2025-300x289.jpg 300w\" sizes=\"auto, (max-width: 520px) 100vw, 520px\" \/><figcaption class=\"wp-element-caption\">St Pat&#8217;s 2024<\/figcaption><\/figure>\n<\/figure>\n\n\n\n<figure class=\"wp-block-image aligncenter size-full is-resized\"><img loading=\"lazy\" decoding=\"async\" width=\"661\" height=\"540\" src=\"https:\/\/cota.org\/cotaforteamham\/wp-content\/uploads\/sites\/6381\/2025\/03\/St-Pats-2016-Kya-and-Eli.jpg\" alt=\"\" class=\"wp-image-247\" style=\"width:305px;height:auto\" srcset=\"https:\/\/cota.org\/cotaforteamham\/wp-content\/uploads\/sites\/6381\/2025\/03\/St-Pats-2016-Kya-and-Eli.jpg 661w, https:\/\/cota.org\/cotaforteamham\/wp-content\/uploads\/sites\/6381\/2025\/03\/St-Pats-2016-Kya-and-Eli-300x245.jpg 300w\" sizes=\"auto, (max-width: 661px) 100vw, 661px\" \/><figcaption class=\"wp-element-caption\">St. Pat&#8217;s 2016 <\/figcaption><\/figure>\n\n\n\n<h4 class=\"wp-block-heading\" id=\"h-learn-more\">Learn more<\/h4>\n\n\n\n<p>If you\u2019d like to learn more about heart transplant: <\/p>\n\n\n\n<p><a href=\"https:\/\/www.mayoclinic.org\/tests-procedures\/heart-transplant\/about\/pac-20384750\">https:\/\/www.mayoclinic.org\/tests-procedures\/heart-transplant\/about\/pac-20384750<\/a><\/p>\n\n\n\n<p>Every donor can save 8 lives and enhance over 75 more:&nbsp;<a href=\"http:\/\/www.organdonor.gov\/\">www.organdonor.gov<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Join the Beat Hello family and friends! First, THANK YOU! The shirt sales were a great success, raising over $1,200 for COTA for Team Ham! We LOVE receiving the photos of you in your shirts. Please keep them coming! We cannot express how grateful we are for COTA and their support to help meet the [&hellip;]<\/p>\n","protected":false},"author":2059,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-246","post","type-post","status-publish","format-standard","hentry"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v26.6 (Yoast SEO v26.6) - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>All That Glitters - COTA for Team Ham<\/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\/cotaforteamham\/2025\/03\/10\/all-that-glitters\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"All That Glitters\" \/>\n<meta property=\"og:description\" content=\"Join the Beat Hello family and friends! First, THANK YOU! The shirt sales were a great success, raising over $1,200 for COTA for Team Ham! We LOVE receiving the photos of you in your shirts. Please keep them coming! 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