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What Even Is Happening…


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glitch-in-the-matrix-catsWhat a crummy summer. We ended up doing nothing fun because of my stupid knee.

I got my surgery, so hopefully it will improve. The surgery went well. But since the surgery – well, it’s just weird. Yes, it still hurts, but it’s only been 12 days. But immediately after the surgery my calf muscle just locked up. You know that horrible pain you get when you have a Charlie horse? Then afterwards, how the muscle sits there like a tight, angry fist in your leg? Yeah. It was like that for …. well, actually it’s just now feeling better. Next was the horrible gastrointestinal holocaust. Now I don’t know if I caught some virus or if the IV antibiotics they gave me completely killed every bacteria in my intestines, but I got hit with Biblical-level diarrhea. For over 24 hours. Sharp & cutting, boiling hot and violent as hell. I actually sat there crying & trying not to scream. It’s better, but there’s still something not right. I’m eating bananas & yogurt, taking probiotics and it’s still kind of weak. Plus I’m dehydrated. Yesterday I drank 2 liters of coconut water and 2 liters of Bai water and still have dehydration symptoms.

Speaking of which, something else weird has happened since my surgery. I don’t know if it’s the dehydration or the anesthesia, but I haven’t felt right since then. I feel disoriented. Disjointed. Like I’m not myself. As if all of me went under the anesthesia, but only part of me came back. I can almost feel a glitch in the Matrix. Like I’m going to turn around and see myself behind me. It’s crazy weird. I just wanna feel like myself again.

Everybody’s back in school. Maggie went back on the 10th. Early because she was starting rehearsals for the musical she’s in at Bradley. It’s called “Mr Burns: A Post-Electric Play“. I believe she plays Colleen – not 100% sure, though. She lived in the dorm for 4 days before she was allowed to move into her sorority house. She’s got that show and recruitment and classes – super busy. Steven started his sophomore year and he likes it so far. Honors Chem, Grammar/Comp, & Algebra 2 as well as Driver’s Ed, World History, Graphic Occupations, & German. Seems to be a very full schedule. I think he can handle it.

Henry is in 7th grade. What the blazes?? He’s quite happy to be back at school. He loves it there. He’s a rock star, everyone loves him, and he knows it. William’s started 2nd grade. He’s got a new teacher and I’ve got my fingers crossed that this year will start turning around for him. In this new class, he’s one of the older kids, so I think it might be good for him. I’ve been telling him that it’s important that he set a good example for the younger kids & help guide them in how things work. He seems to take pride in that idea.

I’ll leave you with some pictures from 1st day of school. Because that’s what I do.

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August is the Sunday of Summer

August-is-the-sunday-of-summerHere we are in August already. Summer just started, didn’t it??

It’s gone too fast for me because I started out the summer with tearing the meniscus in my left knee. Which…what??? No. I don’t even have a cool story. I had been favoring my right foot because I sprained it and then when I was singing at a gig at the beginning of June, all of sudden it just SNAPPED. I felt like I could hear it. Couldn’t put weight on it for the rest of the gig.

I waited a little bit to go to the doctor because I thought it was okay. I finally got into the doctor 2 weeks later. Scheduled my MRI and, sure enough, torn meniscus. At that point it wasn’t bothering me too much, so the doctor said we could wait until it started bothering me. So I made it through most of July before it started really started bothering me. Now I’ve scheduled the surgery for the 10th of August. Gotta get it done before school starts. So now I’m frantically trying to get stuff done before the surgery so that everybody’s ready to start school a week early.

So did I mention that I’m in this awesome band! I wanted to share this video from our last gig (next one is August 7th!!) I’m getting to start singing all these amazing Aretha/Etta James-type songs that I have wanted to sing forEVER. So I wanted to share this one:

I know the outfit is questionable at best, but I am having so much fun!! For this next gig, I get to sing 3 Aretha songs, and PRINCE, y’all. It’s amazing.

I know I should probably talk about something important – like the election or Black Lives Matter or any of the billion other things that are happening in the world. But that stuff is all way too depressing. I’ve posted a bit about it here and there on Facebook, but it’s all so unbelievably ridiculous that I can’t really even make words happen about it. All I can say is that everybody needs to stop being so hateful, spiteful, vicious, and unreasonable. Is it really so difficult to just be kind to one another? To attempt to see another person’s point of view (especially when they VOCALIZE it to you)? To accept that maybe other people have a different life experience than you do and, because of that, maybe we need to LISTEN to them more than we talk at them?

I don’t know. Let’s just…..all take a time out, have a juice box & a nap, and then learn to share.

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A Touch of Happiness

There’s so much hatred & evil going on right now. So much. I can’t handle much more. People murdering people because of who they love. Because of who they worship. Because of where they live. I’m done. So very, very done with it all.

I try so hard to live my life in a way that shows love to others. That shows acceptance, support, kindness (that’s a big one), and encouragement to those around me. I don’t always succeed – I know that. I get frustrated and annoyed just like anyone else. But how anyone could have so much hate in their heart……I just don’t get it.

Anyway. I’ve spent 2 days now reading about ISIS and gun control and gun rights and LGBTQ issues and people HURTING and ANGRY on all sides of every issues. I know what I think. If you’re on Facebook, I probably know what you think, too. And I can’t stomach much more. Really. So I decided that instead of adding another voice to the insanity, I’m going to offer a respite. A few moments of joy & happiness, I hope. Happy pictures of Henry plus a few things that make ME VERY HAPPY.

 

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What a goofer.

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Henry intently watching Sleeping Beauty at WNHS during the Life Skills performance

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“CHEEEEEEEEEEEEEEEEEESE”. Even the principal digs Henry

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Bowling with Best Buddies & Mr. H.

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Completely comfortable owning the middle school office.

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Blues Man, Skylanders Fan

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Henry meets a baby duck

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“OHHHHHHHHHHHHHHHHHHHHHHHHSHEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEP”

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If he ever figures out how to start one of these, we’re all screwed.

 

 

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Jason Isaacs perfectly conveys my DONENESS.

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From the video “In Demand” by Texas. Every time I see this, I stop breathing.

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Because I miss him and he is perfect.

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Spread the Word to End the Word 2016

THIS IS A REPOST THAT I POST EVERY YEAR FOR THIS DAY

STW_2016_PosterI’m tired of tiptoeing around it. I’m tired of pretending like it doesn’t matter. I’m tired of living in a society that treats its most innocent like rubbish. It has to stop.

I know I’m being dramatic. I can’t help it. We all get ferocious when it comes to our kids and how they’re treated by others. When our kids get bullied or teased by their schoolmates, our claws come out. When they get treated like second class citizens by teachers or other adults they come in contact with, we fight back. But imagine if everyone who came in contact with your child viewed them as inferior. As a child. As a teenager. As an adult. At best, they’re treated like they can’t understand anything and perhaps ignored. At worst, others laugh at, ridicule and call names right to their face. People see them and snicker with each other, bandying about hurtful descriptors or smile condescendingly and talk about how “cute” or “sweet” it is that your child is out functioning in the world in whatever capacity. I don’t know about you, but I don’t think I could take that. I couldn’t sit by as my Henry was mocked, ridiculed, laughed at, or treated like he shouldn’t exist. But Henry (and others like him) just suck it up and take it. They don’t shout, “Back ‘atcha bee-yotch” or smack somebody in the face or even politely correct their misapprehensions. They just drop their eyes and try to blend into the woodwork, pretending perhaps like they don’t understand or they didn’t hear it. That just sucks in so many ways, I can’t fully express it.

This has to stop. It HAS to. What have we become? Sometimes I think we’ve come so far in this area since we no longer institutionalize people with special needs and they’re being mainstreamed in education, getting the intervention they need and accomplishing more and more every day. But our attitudes in general haven’t changed. We avoid people who are different. We don’t look at them. We don’t talk to them. It’s almost as if we think if we’re nice to them and treat them like actual HUMAN BEINGS, we’ll catch their cooties or something. GET OVER IT. You can’t catch Down Syndrome. You can’t catch autism. You can’t catch Fragile X or cerebral palsy or hydrocephalus or any of the myriad other developmental & cognitive delays that make people “different”. But you know what you CAN catch from these people? Unconditional love. A more inclusive worldview. A redefinition of what it means to accomplish something. Learning what joy, excitement, happiness really are. Finding amazement in little things. Becoming a better person who’s less focused on yourself and what you can get your hands on or how you can climb the ladder. God forbid any of us should catch any of THAT.

Today is a very important day in our house. It’s a day to get the word out about the word “retard” and its derivatives and how very, very hurtful, hateful and disparaging it is. It’s an attempt to get people thinking about how “retard” is no different from the n-word or f**got or any other pejorative word that refers to someone’s race, sex, religion or whatever. It’s no different because it devalues a group of people by making them small. It’s an attempt to get people to stop using that word. Please. Stop using it. It serves no purpose other than to hurt. It makes an entire group of people into nothing more than a joke. THAT IS NOT OKAY. Ever. For any group of people. But especially for this group because they won’t tell you how you’re mistaken in your view of people with special needs. They won’t challenge you, front you down or beat you up for insulting them.

Back in 2010, Maggie gave a speech in her school. It was given to the 3rd-8th graders and she nailed it. She took a stand and did something about it. I was so incredibly proud of her. I did tape it, but she asked that I not share it here. Basically, she took the speech that Soeren Palumbo gave a few years ago and added a few bits of her own. Actually, it was some things I’ve written in the past about the subject. Here’s what she added:

We’re a country that’s supposed to be about inclusion. Acceptance. Opportunity. A place that discourages hatred, disrespect and cruelty. But, time and time again, people choose to use a word that has no purpose other than to belittle and deride. Of course, there will always be people who choose ignorance over kindness. Hatred over acceptance. Cruelty over inclusion. But if each of us does our part, we can make that percentage smaller and smaller.

I’m setting this off in its own paragraph, because I want to highlight it. Using the word “retard” or “I’m so retarded” or anything like that (joking about the “short bus”, the Special Olympics, etc) does NOT make the use okay. You’re not simply degrading yourself. Break it down – if you say, “I can’t believe how retarded I acted Friday night!!”, what are you really saying? You’re saying that your behavior on Friday night was stupid, ignorant, embarrassing, or somehow not up to the usual standard to which you hold yourself. And by calling that behavior “retarded”, to whom are you comparing yourself? People with Down Syndrome, people with developmental delays, people with cognitive delays. Don’t deny it – that’s what your sentence is saying. You may not be coming out and saying, “I behaved like a person with Down Syndrome – how dumb!!”, but that IS what you’re saying. It’s exactly the same as saying, “Sorry I’m late – I must be on colored people’s time!” or something similar. It’s absolutely, completely unacceptable. If you compared yourself unfavorably with a group of people based on race, gender or religion, you’d be held accountable. Why should this particular group of people be afforded any less dignity, respect or just plain kindness?

We’re all familiar with the idea of being part of the body of Christ and that we all have a purpose to serve. However, I think most of us haven’t given a lot of thought to how (or if?) people with special needs fit into that plan. Let’s see the whole verse.

The eye cannot say to the hand, “I don’t need you!” And the head cannot say to the feet, “I don’t need you!” On the contrary, those parts of the body that seem to be weaker are indispensable, and the parts that we think are less honorable we treat with special honor. And the parts that are unpresentable are treated with special modesty, while our presentable parts need no special treatment. But God has combined the members of the body and has given greater honor to the parts that lacked it, so that there should be no division in the body, but that its parts should have equal concern for each other. If one part suffers, every part suffers with it; if one part is honored, every part rejoices with it. 1 Corinthians 12:21-26 NIV (emphasis mine)

I believe that we as the body of Christ aren’t doing a really good job with this, in general. So what do we do? How does God want us to respond? Until we can rewire our society to understand that people with special needs are worthwhile, useful people who deserve respect just like everyone else, we’re going to face ignorant comments, prejudiced viewpoints, incorrect assumptions and all manner of frustrations regarding these people. What I believe is that it is OUR JOB to replace these comments, viewpoints, assumptions and frustrations with God’s. To respond, with love, in a way that teaches, reaches and helps people understand that our children are also an important part of the body of Christ. In fact, if I’m reading those verses correctly, they are a part with special honor and they’re indispensable  What a powerful idea that is! These people aren’t just EQUAL in God’s eyes; they’re given GREATER honor. They’re INDISPENSABLE  I can’t tell you exactly why, but maybe it’s because God knows they have something incredibly special to share with others and teach us about Him. Maybe.

Best part was that she included Henry. She finished that last bit there and then invited Henry in. He ran right up the aisle, did a lap around the kids, found a chair, sat down, moved to a different chair, got down & went up to Maggie and smacked her, did another lap around the kids and then we went out. The best visual aide ever. Because this is what I believe: an issue like this means nothing to you if it’s not made personal. If you don’t know someone personally who fits into the category, you won’t care. So how can I make you care? Make you know someone.
DSC_5849_filteredMeet my son. First, just realize he exists and he’s attached to someone you know. Then get to know more about him. Now you know someone that this is about. Now, maybe, you’ll care a little more. Meet Henry. He’s a person with Down Syndrome. He’s not Down Syndrome. It’s not who he is – it’s a small portion of who he is. He also is a person who loves animals fiercely – especially cows, giraffes, elephants and farm animals – who dances with a passion and joy unlike any I’ve ever seen, loves to sing (and if he doesn’t know the words, he’ll simply insert animal names), adores big, heavy books that he can set on his lap to flip through. His best friend right now are his 2 tablets (a Galaxy he calls “tablet” and a Fire that’s called “blue one” because it has a blue case) because he can make them do whatever he wants, whenever he wants. He loves his family with abandon. Sometimes a little too much abandon, but still. He has a special affinity for his Pop-Pop. He loves to eat pasta, bananas, yogurt, applesauce, Cheerios and graham cookies. He digs spinning, Elmo, Yo Gabba Gabba, Little Bear, Signing Time, books about animals, Jack’s Big Music Show, Mickey Mouse, bouncing, wrestling with his siblings, The Lion King, iCarly, his aide Lisa, his art teacher, Mr. Jones, Alabama Shakes, P!nk, Parliment Funkadlic, Tom Jones and any other super-funky music . He’s a person. He has things he loves and things he hates. Just like you. Isn’t that something?

If I’ve reached you, even a little bit, please consider going to www.r-word.org and pledge to stop using that word. But, more than that, pledge to start seeing people who are different as the individual human beings they are. Maybe pledge to get to know somebody who has special needs. I promise – it will change your life.

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Dear January: Die in a Fire

FuckJanuaryJanuary has always been a rough month for me. By a large margin, the bad things that have happened in my life have happened in January. And every year, it seems like there are more.

I think part of it is because I have some sort of iteration of S.A.D. – that wintertime disorder where your depression gets worse in in depths of winter. January is very, very bad for my depression. For example, in January of 1988, I had a drug overdose at college. I had gone home over winter break and been put on Lithium for depression. Because I am an idiot, when I returned to school, I continued to drink and smoke pot while on said Lithium. But when I dropped acid one night, the reaction with my Lithium did….something. I still don’t know exactly what. All I know is I had to go back to my room because I could no longer hear anything over the roaring of my own blood flow in my ears. People would talk to me and I could see their mouths move, but couldn’t hear anything. I went back to my room to try to sleep it off and, apparently, started having seizures. As luck would have it (or God. I believe it was God), there were still 2 of my sorority sisters in the house who just happened to be on my floor and just happened to be walking past my room on their way to a party. They just happened to be nursing majors. And they just happened to call 911 and get me to the hospital in time. Of course, I had to drop out of school and go into rehab after that. That’s my sobriety date. January 28, 1988. I watched Brian Boitano & Brian Orser compete in the 1988 Winter Olympics from there.

Some years later, I had to be re-hospitalized for depression and suicidal thoughts. “Committed” against my will for a week in January 1991.

My father-in-law passed away in January of 2007. We buried him in the middle of a terrifying, nightmarish blizzard.

I had 2 January miscarriages. First one before Maggie. Second one also in 2007.

IMG_20160117_135433And, basically, every January I fight really, really hard against caving into my depression. This January can add losing David Bowie & Alan Rickman to my list of losses. I feel bad because my husband’s birthday is in January, but I’m usually struggling so hard just to keep my head above water that I can’t really give him the attention he deserves. And he does deserve hit.

You see, tomorrow is his 50th birthday. I want to be celebratory and whoop it up for him. It’s not that I don’t want to. It’s just very difficult for me. This year I prepared, though. I actually have gifts for him. I hope his day is great. Now off to wrap!

Happy birthday, you creepy, creepy, creeper.

 

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