I blogged about this song weeks ago but decided to write about it one more time because it's such a good song and it was part of my Patagonia experience. When I hike, I find songs repeating in my head so I try to fixate on the best songs that run across my mind. This song, "Arms Wide Open," was the song that stuck in my head the most (in a good way). On a particularly steep hike up to Campamento Britanico, in the rain, with a pack that was digging into my hips, thinking about all the recent and upcoming changes in my life, the refrain "What does love look like?" echoed around my mind followed by "then I saw Him there, hanging on a tree, looking at me" and I began to cry. The love of such a God that died for me is profound. I can't accurately describe what transpired on that hike, suffice to say I encountered God and emerged changed. His command that, "You shall love me with arms wide open, a heart exposed" hit me square in the chest, leveling me and reminding me that He calls us to live with complete abandon to Him.
Today's Rare Disease Day. There's sometimes a particular weightiness to life with a rare disease. All the appointments, emergencies, traumas, doctors, therapists, medicines, opinions, schedules and upset schedules. My touchpoint is being mom to my precious girl with Wiedemann-Steiner Syndrome (WSS). You'd have to spend a day or week shadowing me to know what it's really like. Doesn't that sound alienating? As though you couldn't possibly imagine if you're not living it? Well, maybe. But think about a time of immense grief you've lived through, or a time when your world seemed to be falling apart around you and it felt like everyone else was completely unaffected. I suppose it's a bit like that. You might have thought that those around you couldn't possibly know how that experience felt to you. A couple weeks ago, I started keeping a list of all the extraordinary things that happened in my life due to my daughter's rare disease. I learned a c...
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