They tell me this still counts as therapy

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Mya pretty well slept through January. Between the snow days and her sedation she was awake for about 3 hours of school for the month. I guess that makes people uncomfortable. We also find it less than ideal. I think when we go through these periods where we are doing our best but our best is not good enough we forget how it feels to really have her present. Our child slept through the month of January. That is an enormous challenge we deal with constantly but to which the average parent could not possibly relate. And it isn't just that she is sleeping. Most days she wakes up screaming when I move her from what I can only imagine is a tight body she has so little control over. There is no road map for this. It weighs on our hearts and our moods in ways we may not even see. We feel heavy as we try to find our patience to let the seizure meds settle in before we mark them off the list as failures. We feel the burden on our shoulders of the decisions we face regarding her care that we feel so ill-equipped to handle, heavier still when we are far removed from seeing her joy.

But for the time being my heart is lifted just a little bit. We have made some adjustments in recent weeks to her medications and she is starting to have some alert periods again. More seizures, of course, is the trade-off. The aide on the bus and the bus driver were all smiles as they helped her off today. They shared how she lights up and smiles as they make the turn onto our street. Consistently. She knows this is home. She came home awake and happy. She called out against the cold. She expressed her hunger through her arm clench and her lip smacking. She made eye contact as I asked her about her day and pressed her button with intention to give her news of the day; three short recordings of her teacher explaining how she had slept completely through class. And I couldn't help but smile. She had saved her alert time for home today. Now she is asleep in her stander so that may just be all we get for a while. But it is progress. Mya your resilience is inspiring.

It may be time for a bigger sensory bin?