Well, if it was leap year this year, I'd be on time with my Rare Disease Day post because it's always the last day in February. But, it's not leap year, so I'm a day late.
Some years, I'm on top of things for Rare Disease Day or World CDG Awareness Day (May 16). Some years, I'm not. I did awesome last year for World CDG Awareness Day, so perhaps I'll aim for awesome again this year.
This year, aside from sharing a Facebook post from a past year, I did nothing to celebrate my rare and wonderful Teddy.
I did, however, get him dressed and ready for school. I helped him get on his bus and buckled him safely in and gave him a kiss before he headed to school. I left work early to go to his IEP for which I feel I prepared horribly. I managed to hold it together through the IEP with only a stray tear because I just couldn't stand how irritated and inconvenienced his speech therapist looked to be there, how she dismissed his third goal she's been supposed to be working on all year as not appropriate, so she didn't bother working on it or how she doesn't even know how to use his talker. I made nachos for the family for supper. I played magnets with Teddy after supper. We read stories as a family, and I told Teddy I was so proud of all he's learning.
There's always World CDG Day to be awesome again. Until then, we'll keep trucking along with rare, ordinary days.
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