Our New Normal [s] » Our little family's realization, that there is no normal

Category Archives: dermatomyositis

Trip to Holland

I didn’t write this, but I had to share because I have never come across something that describes our experience better than this. In case you were wondering… it’s short, and lovely. “I am often asked to describe the experience of raising a child with a disability – to try to help people who have […]

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the road less traveled…

…is scary. Well, It’s Wednesday, and we did not admit Vivia to the hospital for treatment. We have been going through a lot the last couple of weeks, and we still don’t feel a “peace” about doing this treatment path. The doctors could not be more vehemently opposed. The specialists seem to think this is […]

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Today was better…

Today was good. I did end up with a major migraine, but my mom came over and hung out w/ the chitlins so I could lay down for about an hour. Baby Steps. VV woke up with 101 fever this morning, but with a happy heart. She’s my new hero.

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It comes and goes in waves. Like her moods. I WILL NOT lose her to this friggin disease. She will not be taken from us for 6 months, 6 days, or even 6 minutes! Can’t I just take her in my arms, and hold her and not let go until this is all over?

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living in a nightmare

I almost feel like I shouldn’t write right now, because I am totally unfiltered. Normally I like to filter, process, filter some more, and then present my thoughts. It’s Gabe’s birthday. Happy effin birthday, honey. I want this day to hurry up and be over bc it is probably one of the worst days of […]

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