LaLa Land

LaLa Land

I have been in LaLa Land. Completely avoiding all things CP.

Of course, CP is life. Therapies, special education, doctor appointments, AFOs, Botox, standers, gait trainers…. It’s all still there. Yet if I can turn it off. Out of my head. It’s off. Put Roa on the bus and decompress.

Roa had a huge growth spurt. 79 pounds and up to my chin, he is getting a little more challenging to handle. Roa doesn’t sit independently. Rolling only happens occasionally. Free-walking with us supporting him happens less as it is a feat of strength for a distance. He is not getting food to his mouth without assistance.

He is 90% nonverbal. Now and again, we hear “yes or no” but pretty much the majority of life is using his device, pictures or choices. He is keeping up with Second Grade academics. He is driving his power chair. For those we are so thankful.

I’m at that avoidance stage of grief. I don’t want to think about all the skills he hasn’t mastered. I don’t want to add up the time and money we have invested in working on those skills. Special therapies, pricey therapists, travel, time away from home…..

I wouldn’t change a thing. I like the little differences we did see. All of the extras were worth exploring. Yet there’s no miracle. Not that we thought there was…. but a mama always dreams.

So I’ve been lax with our home therapy routine. Lax with skill work, stretching, and positioning.

LaLa Land is not just an awarding winning film, it’s a state of mind we like to go to when this life gets too much. In LaLa Land we spent too much time watching cartoons while snuggling on the couch…. too much floor time with balloons…. too much time strolling the pet store or visiting the movie theater. We play with Hot Wheels cars, and Playdough. We read a lot of books.

Unfocused time of jokes, songs, laughing, tickles and avoidance of all things CP, if possible.

This past month, I started peeking in on Reality. Started planning that routine, listing out those benchmarks towards long term goals, thinking of what programming summer will bring.

I started allowing those feelings to come again, my weird quirky thoughts on this life…. wonders, worries, hopes, dreams. And so it’s back to my solace- My blogging to help me process CPLand and all it’s hills and valleys.

I’ll take another vacation in LaLa, but until then, it back to this life that rules us.

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