Another crazy, beautiful day in southern California, and I just feel crazy. I went down to Redondo Beach early this morning to watch the final ceremonies of Sophie's Communicamp. As some of you might remember who've been reading here for a while, this is a week or two of communication camp for children and young adults who use augmentative devices instead of speech to communicate. You can read my first post about it here. Because Sophie can walk, she chose to introduce each performer by tapping her iPad. In the interest of privacy, I won't put up any more photos of the other kids, but there were wondrous things unfolding and tears falling. My favorite boy uses his right heel to tap a switch, and when he hears the recorded message, his face lights up in the most beautiful smile. Another boy did a stand-up (or sit-down) comedy routine with jokes that he told by tapping a switch with his elbow.
These aren't miracles, people, and one shouldn't jump to the colloquial how inspiring, what heroes, etc. etc. These are real people with real needs and a way to communicate them. When you find yourself talking about technology in a disparaging manner, remember these children and their ability to be in the world and not on the sidelines.
That's the beautiful part.
I followed up the Communicamp Final Production with a mosey down Lincoln Blvd and then Abbott Kinney to another medical marijuana pharmacy with an f. I had gotten a lead on this one perhaps having what I need -- a higher ratio tincture of CBD/THC.
Well, it didn't have it.
Sigh.
I got back in my car and started home, meandering through the small beach towns that dot the coast. I shed tears, a small in-car pity party: how am I going to find the right strain for Sophie? Why don't I live as carefree as that girl on her bright yellow bike with the basket? Or that man with his surfboard slung over his shoulder? Why don't we live in a beach town? What am I doing with my life? What the hell?
That's the crazy part.
Yes. Crazy. Yes. Beautiful. Yes. What the hell?
ReplyDeleteI had a mini pity-party cry session in my car today too, circling for parking and whispering why, how, show me. You are not alone.
ReplyDeleteOh man, I've been crying most of today, as we have our custody/change in domicile hearing on Friday and Jonah's dad won't let him talk to me and has gotten him all worked up about moving. And Sophie's camp reminds me SO much of working at the camp my sister went to, (for Deaf kids but also lots of other kids who used sign language as a communication device, hearing or no) and how, as an interpreter, I kept getting things wrong and Sean, one of the kids, kept telling me I was an idiot and what the campers REALLY meant. They all loved it when I signed my name with the sign for "Asshole" and "Unicorn." And most of the parents had no idea, which made most of the kids pretty happy.
ReplyDeleteI love that photo of Sophie doing her part at Communicamp. What a great opportunity to learn and share with others.
ReplyDeleteHow is one supposed to find the right pharmacy, with the right dose, without driving all over creation? I would think the state would provide some kind of listing, so people are able to call or check online where to go for what. I just looked it up in WA, and the state's own info page is mumbo-jumbo. It didn't answer my questions, and is very confusing, so I am starting to get a peek at the scope of the problem. UGH. I can see why you shed those tears, but I am still hoping.
If the state can't provide the info, is there any organization of marijuana pharmacies, or a lobbying arm, or some kind of central information clearinghouse that might be able to tell you where you can find the proper strain?
ReplyDeleteThis post was the roller coaster of our lives. The tears of joy and the tears of frustration all in one day. I love the communicamp story and my smile turned to heartbreak by the end of the post. I get it all.
ReplyDeleteLOVE!!
Communicamp sounds great. I love it that Sophie has an iPad and remember your first post about it. Anyway, it makes me smile to think of all those kids using technology for a big boost. As for this marijuana thing, no wonder you were crying. You'll find it, though. It sounds like you need a team maybe to make calls, send emails,etc., and if you want one sign me up.
ReplyDeleteSometimes a pity party is just exactly what is called for.
ReplyDeleteOh, crap. I was so hoping you would find what you needed. I'm still on the case, though. so I'll keep looking for someone in your area who can help you.
ReplyDeleteAs for CommuniCamp, I love, love, love the people who had the brilliant notion to make this happen. I can only imagine what it must be like for some of these kids to feel the freedom of communicating. What a rush that must be!
Sophie emceeing for the other kids is just so cool - I'm sure the tears were falling freely and hearts were bursting too - and, E, the crazy part RE : the surfer and the girl on her bike and the tears in your car - I know that feeling too - does that make it any less crazy? Prob not - just you're not alone with that stuff.
ReplyDeleteI also find myself admiring those who seem to fall so naturally into the rhythm of just being. I admire their trust in the universe and its ability to bring exactly what they need, when they need it.
ReplyDeleteAs a parent of a medically complex child, I assumed that this type of thinking was a luxury or perhaps even a reckless and irresponsible attitude that could potentially harm my child. I needed to stay current on new therapies and treatments. My warrior spirit needs to be sharp and focused. Only by turning over every stone and using my intellect, will I win this battle and subdue this terrible beast.
Over time however, I noticed that this warrior pace was making me become weary and discouraged.
I realized that perhaps the solution for me was not constant vigilance and action but instead a blend of thoughtful pursuit and deliberate inaction, with a complete trust that the universe will engage.
For me, when things seem difficult and it feels like I am fighting the world, this is a reminder to me that I need to stop doing. I need to just "be" for awhile and allow the universe to help me. When I work with nature and allow my intellect a break from steering the ship, things always seem to get a little better. The solution always seems to come, surprisingly landing in my lap with no effort on my part.
My advice to you dear friend, for what it is worth, is to just stop for a moment. Begin a short period of complete inaction. Take a breath and ask the universe for help. Believe that it will come and it will.