{"id":5178,"date":"2011-01-22T08:55:23","date_gmt":"2011-01-22T13:55:23","guid":{"rendered":"http:\/\/www.babypennington.com\/?p=5178"},"modified":"2011-01-22T12:10:40","modified_gmt":"2011-01-22T17:10:40","slug":"5178","status":"publish","type":"post","link":"https:\/\/www.babypennington.com\/?p=5178","title":{"rendered":""},"content":{"rendered":"

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Then, it seemed like an eternity away.<\/p>\n

The Fontan was a distant milestone that would be our last hurdle. She would be around age three. Such a big girl by then, it seemed at the time. I remember looking at my tiny newborn Mary Clare and hoping and praying and begging God to let her survive. If she could make it through this, now, she could make it through anything. And the Fontan would be a breeze.<\/p>\n

Years, months, weeks away. As it grows near, I find myself forced to face reality. It’s here.<\/p>\n

I hate Hypoplastic Left Heart Syndrome. With every ounce of my being. I hate that my daughter is defined by her defect. I would be lying if I said that it hasn’t changed each of us. It is who she is. Like the scar on her precious chest that reminds me everyday that her body is not as perfect as I’d like, it will be with her forever. Funny thing about that is, I wouldn’t change her for the world.<\/p>\n

This past weekend, Mary Clare had a seizure. It was a febrile seizure, brought on by fever. We were at the beach for the long holiday weekend when it happened. After a scary morning, ambulance ride and lots of questions, prayers, and tears, all is well. They are fairly common. Now<\/em>, I know. But to say it was one of the most horrifying experiences I’ve ever had would be an understatement. I’ve seen her tiny 6 pound body ripped apart, plugged into dozens of machines, wires, and tubes. I’ve watched her lay silently with her eyes closed for days in a hospital bed. Nothing, however, could have prepared me for what I felt the morning of her seizure. The feeling of complete helplessness and fear overwhelms me to even remember. The look of nothing in her eyes, the horrendous sound escaping from her and the feeling of her uncontrollable body haunts me still. I wasn’t surrounded by her doctors and nurses. I had no one to there to take over to fix everything.<\/p>\n

I will never forget how nothing else mattered.<\/p>\n

I heard my mom tell me she was having a seizure. My first thought was to get her safe. I placed her on the couch to watch her. Then my own heart dropped as I thought of her tiny heart. I didn’t know how or if seizures affected her half heart.<\/p>\n

When my mother took McCanless back to the house, I laid in the hospital bed alone with a groggy Mary Clare. Her IV tubes were draped across my chest and I cried. I sobbed. For the first time in months every fear and emotion hit me all at once. Reality slapped me in the face. Square on.<\/p>\n

This week was rough for me. I couldn’t shake that uneasy feeling. I kept seeing Mary Clare and reliving the thoughts I had during her seizure. It’s amazing how your brain never stops. Today, however, I’ve kicked into planning mode for Mary Clare’s Fontan. Details of schedules for McCanless, bills, pets, household tasks are being ironed out. I’ve cried several nights this week, but no more. I’ve got to face it. If she has to do it, the very least I can do is help prepare.<\/p>\n

God gave her such spunk and spirit for life. Her HLHS may be apart of who she is, but Mary Clare is who we love and adore. Scars and all. I know she may not realize what is about to happen to her and I can only hope and pray that she’ll forgive us and understand one day. She knows that once her heart is “fixed” we’ll go visit the princesses at Disney. I’ve never been one to wish away the time, but I dream of the summer. I ache for the summer. For her. Snow and Fontan behind us. Princesses and life ahead of us.<\/p>\n


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Then, it seemed like an eternity away. The Fontan was a distant milestone that would be our last hurdle. She would be around age three. Such a big girl by then, it seemed at the time. I remember looking at my tiny newborn Mary Clare and hoping and praying and begging God to let her […]<\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1],"tags":[],"class_list":["post-5178","post","type-post","status-publish","format-standard","hentry","category-uncategorized"],"_links":{"self":[{"href":"https:\/\/www.babypennington.com\/index.php?rest_route=\/wp\/v2\/posts\/5178","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.babypennington.com\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.babypennington.com\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.babypennington.com\/index.php?rest_route=\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.babypennington.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=5178"}],"version-history":[{"count":14,"href":"https:\/\/www.babypennington.com\/index.php?rest_route=\/wp\/v2\/posts\/5178\/revisions"}],"predecessor-version":[{"id":5202,"href":"https:\/\/www.babypennington.com\/index.php?rest_route=\/wp\/v2\/posts\/5178\/revisions\/5202"}],"wp:attachment":[{"href":"https:\/\/www.babypennington.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=5178"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.babypennington.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=5178"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.babypennington.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=5178"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}