This Christmas was heart heavy. It’s difficult to digest the potential of being the last Christmas for Lily. It’s a thought that I try not to have, but watching Lily unenthusiastically trying to finish opening her presents breaks my heart and has the imagination taking off again. The last few weeks Lily’s energy and spirit has been dampened. Her food consumption has gone down, she looks forward to going to bed, and doesn’t want to leave the house. She’s quiet and doesn’t excite like a 7 year old does. Lily’s fight is fading and on multiple occasions says “I don’t want to do this anymore.” So watching her only finish unwrapping presents to just get it done was difficult to watch.<\/p>\n
Lily can go down real fast and it’s anxiety inducing to live with that fear. The doctors say her signs will be subtle so we need to be extra vigilant. Any day she can get a heart, but any day she can go into heart failure and we live in a hospital. It’s a race against time and it’s an amount of time nobody is sure of. There are signs she’s heading down and it scares us.<\/p>\n
We’ve traditionally spent Christmas at my Dad’s house surrounded by family. Although we spent time with our family out here and FaceTimed Palan Christmas, it’s not the same. Different doesn’t have to be bad, but in times like this the familiarity helps with the scary in our face. On top of what we’re experiencing between these four walls, our heart is heavy for my brother’s family and not watching the joy our kids share with each other. Their kids are going through a lot and we know in our hearts the comfort they lost with our kids moving away. It’s been a tearful year for the Palans.<\/p>\n
<\/p>\n","protected":false},"excerpt":{"rendered":"
This Christmas was heart heavy. It’s difficult to digest the potential of being the last Christmas for Lily. It’s a thought that I try not to have, but watching Lily unenthusiastically trying to finish opening her presents breaks my heart and has the imagination taking off again. The last few weeks Lily’s energy and spirit […]<\/p>\n","protected":false},"author":0,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-10","post","type-post","status-publish","format-standard","hentry"],"acf":[],"_links":{"self":[{"href":"https:\/\/cota.org\/cotaforlilysheart\/wp-json\/wp\/v2\/posts\/10","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/cota.org\/cotaforlilysheart\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/cota.org\/cotaforlilysheart\/wp-json\/wp\/v2\/types\/post"}],"replies":[{"embeddable":true,"href":"https:\/\/cota.org\/cotaforlilysheart\/wp-json\/wp\/v2\/comments?post=10"}],"version-history":[{"count":0,"href":"https:\/\/cota.org\/cotaforlilysheart\/wp-json\/wp\/v2\/posts\/10\/revisions"}],"wp:attachment":[{"href":"https:\/\/cota.org\/cotaforlilysheart\/wp-json\/wp\/v2\/media?parent=10"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}