{"id":121,"date":"2024-12-08T18:13:12","date_gmt":"2024-12-08T18:13:12","guid":{"rendered":"https:\/\/cota.org\/cotaforteamham\/?p=121"},"modified":"2024-12-08T19:07:14","modified_gmt":"2024-12-08T19:07:14","slug":"take-my-breath-away","status":"publish","type":"post","link":"https:\/\/cota.org\/cotaforteamham\/2024\/12\/08\/take-my-breath-away\/","title":{"rendered":"Take My Breath Away"},"content":{"rendered":"\n
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Disney World 2013<\/figcaption><\/figure>\n\n\n\n

I\u2019ve been reflecting on why it\u2019s been challenging to write to you in this blog. After Kenny died, I wrote a lot and those words came with relative ease. I leaned into this and it became clear to me that those words flowed because Kenny had died. The most crushing, unimaginable thing had happened. In our life story now, we are pushing hard against this possibility. Writing about it makes it more real. It literally takes my breath away as I type the words.<\/p>\n\n\n\n

As we entered the holiday season this year, I\u2019ve been unable to ignore the thought that next Christmas might look very different. I can quickly sink into the darkness that consumed us the first Christmas without Kenny. The experience of our unimaginable loss is sometimes so close it’s hard to breathe. I acknowledge this and move with intention embracing moments of laughter and joy, capturing memories, and holding them close. However, it\u2019s a regular tug at the heart.<\/p>\n\n\n\n

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Silver Dollar City Run to the Lights 2013 <\/figcaption><\/figure>\n\n\n\n
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Before the kids were restricted to non-cardiac activities due to ARVC<\/figcaption><\/figure>\n\n\n\n

Luxury of a hand grenade<\/h2>\n\n\n\n

In a previous message to you I mentioned the luxury of time. We have been able to monitor the heart health of Kya and Eli since Kenny died in 2010. Kenny died at age 14 and it\u2019s now been 14 years since his death (Oh the irony. We can\u2019t make this stuff up). For the last ten years we\u2019ve known Kya and Eli had this ticking time bomb in their chest.<\/p>\n\n\n\n

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Sidebar \u2013 when things get hard, dark and inappropriate humor is a go-to. You have full permission to smile or even laugh. You wouldn\u2019t believe some of the jokes that are told around here. We are coping the best ways we know how and we also have professional therapeutic support on board, so don\u2019t worry\u2026well, maybe worry a little and check on us from time to time.<\/em><\/p>\n<\/div>\n\n\n\n

Okay, so ticking time bomb\u2026we expected their \u2018timers\u2019 to go another 5-10 years before we were discussing heart transplants. But here we are, feeling like we\u2019ve always had this grenade and now the pin has been pulled. If I were an artist, I might capture this by drawing a picture of God with the grenade in one hand and the pin in the other. I don\u2019t believe God is out to destroy us, but I recognize this is all outside our control (you know I really hate this part), and all things are in His hands. I\u2019ll discuss faith more in future blogs, but let\u2019s put a pin in that for now (pun intended).<\/p>\n\n\n\n

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In the queue<\/h2>\n\n\n\n

This journey is a roller coaster. It\u2019s a Mission Space – Rock \u2018n\u2019 Roller Coaster – It\u2019s a Small World – Tower of Terror – Grandfather\u2019s Mansion \u2013 Giant Swings – Fire in the Hole all rolled up in one kind of experience. (I hope you connect to at least one of those thrill-ride references. If not, search YouTube for Disney World or Silver Dollar City for a demonstration). While we feel like we have been robbed of several years in this ARVC disease process, we also have the \u2018luxury\u2019 of being forewarned. You might say we are at the end of a long queue. This is not a ride anyone wants to get on, but the \u2018luxury\u2019 of waiting gives us time to prepare, especially financially. Sticking with the metaphor, imagine the following as the signs you read as you wait to get on the roller coaster…<\/p>\n\n\n\n

Signs in the queue<\/h2>\n\n\n\n
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Silver Dollar City 2014<\/figcaption><\/figure>\n\n\n\n