Isaac is on a pretty good roll here, no major sick scares since summer – that’s pretty impressive for him. He’s making it to school, and Little Gym, and therapy (LOTS of therapy)…. we still get asked a lot about how he’s doing, and how we’re doing.
It’s hard to explain it though – I’m so happy and proud of him, but there is always the tired. It’s crazy, as special needs parents we can sleep a full 8 hours and do the typical things to be well rested, but we never really are. This was a topic with another special mama this week, we are just tired, but we shouldn’t be.
Even when things are good, they are stressful. We are on constant alert – for the next illness, the next accidental trach pull, the next plug in the trach, the next time the feeding tube clogs, the times our child feels left out, or acts out because he doesn’t have the words to express himself.
When we aren’t on alert for those things, we are thinking and scheduling and planning. Ordering supplies, checking supplies, setting up appointments – finding a local team for Isaac is awesome, but requires MORE research and initial visits and record compiling… sometimes it feels like it will never end.
Then there are our “typical” children, they also need us and wants us. They also act out because it’s hard to be Isaac’s brother or sister. Sometimes they even need to see a doctor or dentist, and we’re back on the phone to coordinate.
Sometimes when we’re really tired something amazing happens, a reminder about why we are doing all of this. We walk out of another therapy appointment, where Isaac was practicing jumping with two feet at one time…… when he and his brother spot puddles and realize they have their puddle jumping boots on. For a just a moment it doesn’t matter that I am tired……

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