**I\u2019m not looking for platitudes or reassurance here. I\u2019m just giving you a window into the mind of a mom of a child with a chronic illness.\u00a0 Prayers are always welcome. Telling me why what I\u2019m feeling is wrong is not.**<\/span><\/p>\n \u00a0<\/p>\n Today marks one week until we see the geneticist. I\u2019m fighting like hell to be positive and upbeat, but the panic attacks which happen dozens of times a day tell a different story. I\u2019m terrified.<\/p>\n I am way beyond wondering what happened to the ferociously perky and determinedly healthy daughter of the past. Her sassy spirit remains, but the healthy vitality of childhood waxes and wanes. I miss the girl we had with an unspeakable ache, but I cannot allow myself to go looking for her. I have only the energy for the girl we have today. <\/em><\/p>\n Today<\/em> she is in a chair. Today<\/em> she is tired. Today<\/em> she is hilariously funny. The funny is enough. It has to be.<\/p>\n And yet,\u00a0 next week may bring us closer to knowing what has happened, and I\u2019m afraid to know. They will take her blood, and mine and my husband\u2019s, and look for answers. A preliminary phone screening revealed that I have markers for genetic diseases, but not which diseases\u2026. Yet. Markers in me don\u2019t necessarily mean disease in her, but she has some of the same markers too.<\/p>\n There is an awful place when someone you love is sick where your prayer changes from \u201cplease don\u2019t let them find anything wrong\u201d to \u201cplease can we find something so that we know?\u201d We want answers, and yet, at the same time, we are terrified to hear them.<\/p>\n Please can it be injury or disease? Please, dear God, can it be something other than genetic? It feels awful to wish such things on her, but something is already clearly wrong. A child doesn\u2019t go from running and jumping to unable to stand within a week\u2019s time unless something is wrong.<\/p>\n So please can it have come from outside of her? Because I don\u2019t know what to do with the thought that this child created out of love was also born of some kind of toxic soup of us. I don\u2019t know how to process the knowledge that she is crippled simply because she is ours. We will make peace with that awfulness if we have to, but I can\u2019t fathom that pain today.<\/p>\n I guess the truth is that we want answers, but only if they are the right kind of answers. If they aren\u2019t, then I want nothing more than ignorance. And ignorance I already have, until next week.<\/p>\n And, Oh, dear God, I can\u2019t breathe from the weight of it all. I look across the room at her atrophied legs and wonder if that has come from us, then look around at the gamboling litter of children who all carry our genes\u2026and I swallow hard at that lump in my throat which never quite disappears.<\/p>\n So for now I\u2019m praying, not for answers, but for peace. The answers are coming, ready or not.<\/p>\n \u00a0<\/p>\n \u00a0<\/p>\n<\/body><\/html>\n","protected":false},"excerpt":{"rendered":" **I\u2019m not looking for platitudes or reassurance here. I\u2019m just giving you a window into the mind of a mom of a child with a chronic illness.\u00a0 Prayers are always welcome. Telling me why what I\u2019m feeling is wrong is not.** \u00a0 Today marks one week until we see the geneticist. I\u2019m fighting like hell […]<\/p>\n","protected":false},"author":1979,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1],"tags":[6,19,9],"class_list":["post-3131","post","type-post","status-publish","format-standard","hentry","category-uncategorized","tag-ella","tag-mystery-illness","tag-parenting"],"yoast_head":"\n