I had a breakdown today. We're pretty lucky with how managing EllaRhi's day to day goes. Actually, f that. We're not lucky. It's super intentional. Her diet is tailored to what her body can process, I keep a mental log of all the "treats" she eats running in my head (treats aren't always sweets for her, cheese, bread, even some fruits and veggies are all things she can only have in moderation, if at all. If I say no to something, it's because she's reached her limit, not because I wouldn't like her to have it), We're *usually* militant on her meds. At just under 3.5, shes been able to swallow all three pills at one time for over a year. But sometimes we fuck up. Sometimes we let her schedule deteriorate over time until there just isn't one. Sometimes I get to lax when we're eating out at a fancy place and she just wants to enjoy things we'd never be able to have otherwise. Or sometimes we get so into snuggling and reading and bedtime things that we completely forget meds. Sometimes I think "just this one time she can xyz". But she cant. She does so so well the majority of the time that I start to think she's just a normal kid, like every other person who eats all the things they enjoy and doesn't rely on restrictions or a regime to function normally. But she's not. And then we have days like today. When we're chasing after poop. Playing catch up. She HATES these days. She screams and shakes and begs us to stop. She is SO strong, in her will and her body. And it breaks my heart. And I feel so guilty for letting her down this time around. I know we're fortunate her complexities are only as severe as they are and that most of the time, she does so well you'd never know she wasn't anything other than a typical kid. I'm so proud of her and how much she's progressed, far surpassing anyones expectations. I try really hard to keep it together for her on her bad days, during doctors visits, procedures and recoveries. But I couldn't hang today. I cried with her. I held her. I wished she never had days like this. ❤️ This shit is hard.
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