Learning As I GrOw: life is messy and that's ok

Sometimes we see people's FB posts and things seem to be so perfect- I rarely post the messy parts- who does. I will say today was perfect, in the sense that being with my family is special to me, however far from perfect in the way others may view it or in how I feel mentally or physically at the end of it; I'm exhausted. This is the norm as a special needs parent, or any parent really, just a bit more exhausting. My daughter  T who is happy, loving, determined, bright, funny, outgoing etc also has to deal with a rare brain disorder which pretty much changes everything. So, here's a small view into our day: T was up at 4:30, so were we since she was asking for cereal & Barney and even though she had both she was repeating it over & over. Later that morning we go to brunch where she's somewhat loud & repetitive, but doing well. She asks for chocolate milk, of course wanting more but they were out- possible meltdown- thankfully she chose apple juice. Trust me when I say it's not fun to see an 18 y/o melting down. We then go home to bathe our pup Rocky so we can all go out into the community on an outing. In the process of attempting this Rocky is soaking wet covered in soap, T is crying because we asked her to move out of the way. The dog gets loose, takes off up the stairs with T close behind letting him into the house where he's running all over the place. So, we finally get to our outing, everything seems fine when BAM.. meltdown mode- T's mood is brewing- must leave at that moment. We do. This is common. There are good days and bad days. Pachygyria does not allow life to go as planned. Through it all I cherish the moments in between the messiness. To me it will always be perfect~

Re Post from a previous FB blog

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