Tuesday, June 26, 2018

And Thus it Begins

And we're off!!  Josh, Angie, Olesya, and Kenny are all attending the ELCA Lutheran National Youth Event called The Gathering, which is held in Houston, TX and 30,000 youth from all around the US and even from a few other countries will be attending.  They will participate in worship the likes of which they have never seen before, take part in service projects throughout Houston, and explore their faith in new and creative ways.  Kenny and I arrived early so he could attend a pre-event for teens with disabilities, and tonight he joined the rest of the crew to move on to the main event.

Tomorrow, I move on to a retreat of my own, as I fly to visit my best friend, Candi, and have our second annual girl's retreat where we can both just let go of everything, play a little, rest a little, and talk through so many things that just need talking through.  You know what I mean?

One of the things we are going to talk through is something that happened while here, and I need to find a better way to let things roll off my back.  What I am finding is that the older the kids are, the more bold comments are thrust at me, leaving me disheartened, beat up, and doubting just about everything.  

Without giving personal details about someone, we encountered a woman here who took it upon herself to lecture me not once, but twice, about Kenny's future.  This woman has no knowledge at all about Kenny's brain issues, or his function, but after a five minute encounter she had it all figured out and wanted to make sure I knew it.  She derided me publicly, shamed Kenny making him feel like some kind of Mama's Boy, and essentially tried very hard to act the expert and challenge me.  Sometimes I am absolutely stunned at the things people feel free to say to others.

Oh, how I wanted to attack!  Instead, you know what happens?  What ALWAYS happens...I get hurt, I over-explain in an effort to defend myself, and I walk away feeling like no one will ever understand.  And you know what?  They really don't ever understand.  In many ways, I am punished regularly by people like this who see a public version of Kenny (or the girls) who looks perfectly normal and capable.  What they DON'T see is all that goes into making that happen.  Already on this trip:

1)  He lost two TShirts, eventually someone announced them and he found them.
2)  Someone had to literally JUMP on him and knock him to the ground to protect him as he obliviously walked across the "No Walk" zone under a zip line as someone was zipping overhead.
3.  He forgot his room key more than once.
4.  He took a picture of our room number so he didn't forget it.
5.  He forgot to take his pills, even with a reminder on his phone.
6.  He forgot to shave two days in a row because his routine and location is different and it changes his patterning.
7.  He couldn't find his way around the airport.
8.  He forgot to pack ear plugs that Dominick brought home for him.

And there were more, these are just the things I remember.  To deal with the memory issues and keep him on track, learning and growing, is hard enough, but dealing with others makes it far more painful.  Kenny tried to comfort me as I was crying last night, part from frustration and part from exhaustion and doubt.  He repeated something to me that I said a couple of years ago to him, "I can't fight our brains and the world, too." 

Kenny was reminded of this and really tried to step in between in his gentle way today to protect me the second time this woman came at me, but he was blown over.  The opinions of others sting far more than they ought, but I allow it.  And I discovered something here...we don't really fit in the disabled community because Kenny "passes" too much as normal, and we don't fit in the normal world because he can't really perform as "normal" in many situations.  I was frustrated and hurt after being attacked, and he and I talked about it a lot, as we are trying to find ways to better engage with others as a team, in the ways we will need to for a long time to come.  

This person was pushing the fact that all Kenny needed was a good roommate to help him out, and he would be perfectly fine.  We both laughed at the simplicity of that, like a roommate is going to come behind him and check on his meds, his personal hygiene, drive him everywhere, and more.  Do I want Kenny dependent on us forever?  No, but the truth is, it is that he really will always be dependent on someone. Will that be a spouse someday?  Oh, how I wish that for him!  Will it be a group home?  I would NEVER wish that on him as he really wouldn't fit at ALL in that setting.  And as we talked about it we laughed, thank goodness we laughed!  That young man makes this easier!

We joked about how this imaginary "roommate" would help him address envelopes and fill out forms correctly, which for some reason seem to be tricky for him.  And then he laughed louder and said, "Hey mom, you don't even know about this one!  I sent in my ballot and it came back the day before we left because I didn't even THINK that I needed to put a stamp on it!  Maybe my imaginary roommate can check every envelope I send out, too!"

Humor heals, don't let anyone tell you it doesn't.  

So, I am alone in a hotel room tonight, repacking and trying hard to just shake things off and be able to get my heart into a place where I can be Cindy...not wife, not mom, not teacher, not advocate...just Cindy. Sometimes I lose her in everyone else's needs, and I need to work really hard to find her again.  

Dominick is home with Matt, who just returned from 10 days in leadership at the Civil Air Patrol Encampment at the Air Force Academy, and they are planning on some special Dude Time ATVing, eating pizza every night (probably!!! Hahaha!) and who knows what all else.  Before I even get home, they all head off to be Camp Counselors at La Foret, their United Church of Christ summer camp.  Three remain behind afterward for their own camp experience, and then Josh and I head off to do more filming in Massachusetts for his documentary.  After that, I will be in Denver to be with a friend whose son is having major jaw surgery that is cleft related, offering support and a hopefully a calming presence.  After that, we have a family vacation scheduled locally hanging out at a cabin, enjoying the Colorado mountains.

And thus it begins, a summer of running wild, of each of us having experiences that help us grow, and of serving others.  And in between, we will have lots of laughter, and probably a few tears as we continue to deal with a lot of emotional issues.  That's OK, we are doing the work that needs to be done, and I am glad it is being done now rather than have it tamped down only to reappear later.

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