tag:blogger.com,1999:blog-158308452024-03-14T05:00:49.205-04:00Chunkin's BlogI've had to change the approach since Connor passed away, but I still write, and I promise to keep going. Anything less for him is a failure.chunkinsbloghttp://www.blogger.com/profile/03437469379640787120noreply@blogger.comBlogger219125tag:blogger.com,1999:blog-15830845.post-45742993925039367112022-10-05T17:47:00.001-04:002022-10-05T17:47:18.169-04:00Tribute<p>I know it's been more than a week since the show. I find that when I talk about what I saw there, it makes me tear up, so I've probably been using an excuse about being too busy to sit down and really write about what is going on. But I need to, before it all goes away.</p><p>I'm going to start with the most significant fact of them all, which is that my husband, Lee, is amazing. When I couldn't buy tickets...not for lack of trying...he stepped and and worked until he managed to secure me 2 tickets to this show. He told me while I was mid-isolation in covid, so part of me was not sure I had not imagined it in my congested delirium. I had not. It was true. He'd gotten 2 tickets to a show I thought (think??) will be the last Foo Fighters show. Once we determined that it was not going to be possible for both of us to go, it became very important to get the right person to come along. This is a transcript of the conversation:</p><p>Lee: You should take Shannon! (Shannon is my sister.)</p><p>Me: I feel like, in that couple, the person I should take is Todd (Todd is my brother in law, married - obviously - to Shannon).</p><p>Lee: Oh, you're right. It should be Todd. </p><p>Todd is a drummer. Todd and I performed together for years in Quarter Mexican. We covered Foo Fighters, among other bands. It was the only right decision to ask him first. We did, and he reorganized things to make the trip as well. It was arranged. </p><p>I made promises to people - I promised to use my phone to take photos and videos. I hate that at shows. I want to experience the show, not view it through a tiny screen that won't make a difference to me later in time. At the end is a link to a photo folder with my videos and pictures. They aren't the greatest videos, but they will give you a taste of what the night was like. It should be broadcast by Paramount+ sometime in the future.</p><p>So...the actual show. We had crazy good seats (again, husband is amazing). The doors opened at 5, show started at 7, and they meant it. It was on time. At 7, the lights dimmed and two figures walked out onto the stage. Violet Grohl and Alain Johannes performed the Jeff Buckley cover of Leonard Cohen's "Hallelujah" - beautiful. I don't want to get off track by waxing rhapsodic about Jeff Buckley. I could. He is another singular talent gone far too soon. Violet's goodbye to her Uncle Taylor was hard to listen to. I teared up a lot during her song. They left the stage, and within 3 minutes the stage was taken over by Joan Jett, Travis Barker and Foo Fighters. Joan Jett spoke for a bit and she broke a little, saying "I don't think I can get through this." Let me tell you, seeing/hearing the toughest woman in rock and roll break down was hard. I started to cry again. I texted Lee and told him. He said, GET IT TOGETHER WOMAN! and I realized, he was right. This was a once in a lifetime opportunity, and it was a celebration of someone who loved music down the center of his center. I shouldn't be wasting my time crying. So I stopped and it didn't get bad again until the very end.</p><p>I want to take a paragraph to praise the work of the techs...the roadies. There were probably 8 different drum kits that night, two of which stayed on stage the whole time and the rest which were moved in and out. There were also, I think, 11 Marshall stacks across the stage, as well as bass cabinets. I think I heard maybe 4 places where there was feedback that wasn't planned. They ran the tightest shop I've ever seen. The longest break was near the beginning, between the Coattail Riders and the James Gang. It was less than 7 minutes. I timed it on my phone. They were fast and precise professionals and I am in awe of them.</p><p>It'll take too long to go setup by setup. Here are my top 5 moments only in order of occurrence in the evening:</p><p>*While the Coattail Riders were out, with Josh Freese on drums and Justin Hawkins singing, out strolled Mark King. Who is Mark King, you may be asking? I believe Justin introduced him as the man with Thumbs of Glory. Mark King is the bassist, singer and songwriter for Level 42, and wrote one of the most perfect songs of my life. I commence flipping out because they are playing "Something About You" which has been one of my most loved songs of all time.</p><p>* Wolfgang Van Halen came out to play, and they launched into "Panama" which made Todd and I laugh because we'd spent time at lunch speculating what would they play and that was the top of Todd's list. It's not my favorite. But then they followed it up with my favorite, "Hot For Teacher." I know the message of that song is insane. I don't care. I love it. I've always, always wanted to perform it. </p><p>* Dave brings out Nancy Wilson and talks about how awesome she has been for so long, wondering aloud "I wonder who could sing a Heart song?" and I am yelling at Todd and yanking on his arm like I'm a ten year old "P!NK CAN SING A HEART SONG!!!" And Dave says, "P!nk can sing a Heart song!" and then she came out and absolutely destroyed "Barracuda" and then...just vanished. WHAT??</p><p>*They followed her with Stewart Copeland of the Police, and he is without question the most acrobatic and interesting drummer to watch work. During his set was the only time I wanted to be in the seats behind the stage just to have a better view of him.</p><p>* Queen's whole set was amazing - Justin Hawkins came back out to sing, Roger Taylor left the kit to his son to come out and sing, P!nk came out and sang the song I think Taylor covered the most with Foo at shows ("Somebody to Love") and again, owned it. Brian May sang "Love of My Life" with just a 12-string guitar and Taylor's wife Allison and their children onstage with him, and we all put our phone flashlights on and it was so bright when we did that it literally made the whole arena visible. Stunning, really. </p><p>Special honorable mention to Justin Hawkins, who leapt onstage with three different and diverse line-ups and absolutely OWNED the stage. I love him. Also, special negative honorable mention to Sebastian Bach, who sounded exactly like he should, but was the only person out of the almost 60 participants who tried to get the crowd to cheer just for him. He was like, let's hear it for Lars Ulrich! (crowd roars)...let's hear it for Geezer Butler!! (crowd roars louder) ...and let's hear it for me! (Crowd suddenly receives text messages they have to check immediately, or...crickets.) Seriously, Sebastian. The show was not about you. Ew. You're gross. Go back to whatever hole you were in.</p><p>The last hour (all of which happened after midnight) was Foo, with revolving drummers. We got Travis and Chad and Matt and Josh and Rufus and more...Their second song was "The Pretender" and out pops P!nk again. I'm thinking, oh what a great song for her and then realize...they needed someone to sing Taylor's part in the choruses. It was the first time I got sad in a long time at the show. Later, they start to cover "Creep" from Radiohead and out strolls Dave Chappelle to sing it. Totally entertaining. Shane Hawkins comes out to destroy "My Hero" and "I'll Stick Around" (which I always think of being Dave's declaration of independence after the end of Nirvana). Chad Smith ends the night on the kit with them as they close with "Everlong". The Foos bow. They bring out as many people as are still in the green room out to bow. It's after 1 am, and we still have to find a car back to the hotel...which took over an hour. All told, we spent 7+ hours at the Forum, plus the 2 hours getting there and home. I wouldn't give back a moment of that time. This is the biggest cultural event I have ever attended, and likely ever will. I'm still so sad and so mad that he has died. Why a 50 year old? Why someone who seemed so positive and filled with radiating love? You don't get 60 massive musicians to prepare for and travel to a show for you if you have a bad reputation. </p><p>I'm afraid I won't ever see Foo Fighters play again, but I've seen them a lot, plus the internet exists now so you can see all kinds of other clips. It's not like when I was young and if you missed it, that was it. My deep and abiding sympathy goes out to his family and his band family. Their loss is so vast, it's hard to wrap your arms around it. </p><p>Additions: here is my note I kept in my phone with the setlist. I've corrected spelling as best I could after typing in the dark without my reading glasses as the show happened. Below that is the link to the photos and videos. Thanks for reading. Share some music with someone.</p><p><br /></p><p>Setlist: <a href="https://docs.google.com/document/d/1QuojnhcFrpcHgB1TuX6X4dSLbOzKtrhYXo-32_buAFY/edit">https://docs.google.com/document/d/1QuojnhcFrpcHgB1TuX6X4dSLbOzKtrhYXo-32_buAFY/edit</a></p><p><br /></p><p>Photos/videos: <a href="https://photos.google.com/album/AF1QipMhNyop0r8teAJqBP4Xonrvh26J29X8qDiTi114">https://photos.google.com/album/AF1QipMhNyop0r8teAJqBP4Xonrvh26J29X8qDiTi114</a></p>chunkinsbloghttp://www.blogger.com/profile/03437469379640787120noreply@blogger.com0tag:blogger.com,1999:blog-15830845.post-33124235299245175502021-03-23T19:34:00.002-04:002021-03-23T19:37:12.510-04:00*Dream*<p><span> </span>Yesterday, I woke up having just experienced the best dream I think I ever had. And since it's been a hard year for everyone, with so much loss and so many people we miss, I wanted to share it.</p><p>In this dream, I was on a vacation, I guess. I was not at home, at least. The house we were at reminded me of the home where my cousins lived in my young childhood - an amazing old Victorian. Various extended family members were there in addition to my family - my WHOLE family. The part I remember clearly is that I was sitting with Connor who was taking a nap. It was just so peaceful. He was wrapped up in a blanket, and our dog (who was not with us when Connor was) was snuggled up with him. It was incredibly peaceful. Then Jack (the dog) decided it was time to get moving, so he got up, snuffled into Connor's ear a bit, licked his cheek, and headed out. (In case you don't know, Jack is NOT a kissy dog. You have to have food on your skin to get a kiss.) Connor woke up as a result of this sweet affection from Jack, giggled and said, "He kissed me!"</p><p>His voice was so sweet. I love it so much.</p><p>In the dream, I froze, said, "Get Lee," to whoever it was near me, and started crying. Then I asked who kissed him, and he said, "The dog!" </p><p>So I asked, "What's his name?" Jack!</p><p>"How did it feel?" It tickled!</p><p>Lee came running to experience this, and in the dream he also cried. My mother came. Lee's sister. We all got to experience my happy dream of Connor communicating with us.</p><p>I woke up in such a good mood.</p>chunkinsbloghttp://www.blogger.com/profile/03437469379640787120noreply@blogger.com0tag:blogger.com,1999:blog-15830845.post-31360071627876258552020-02-01T07:45:00.000-05:002020-02-01T07:45:36.977-05:00Six Years InThis last year to year and a half has been hard, which is why I've stepped a little away from the writing. My son has needed more of me, and I didn't want to air his business. I haven't even asked my husband what he thought about whether or not I should write about his stuff. I just don't. One day, that can be his story to tell. It's getting better though, so there's that.<br />
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This may be our last First. It's been six years since Connor peacefully slipped away while we all slept. Six years since my husband had to come tell me that he was dead. Six years since I woke up believing my family was here with me, only to find out minutes later that we were no longer a family of 5. Since we called the police, and had to tell our 7 and 4 year olds that their brother had died. Since we had to call our sisters and brothers and moms and dads and friends and tell them this. And it was a Saturday, just like this year. That's our last First. A day completely empty of the normal get-up-and-go. In many ways, I'm glad it was a Saturday because it meant that everyone we had to call was in a different headspace - it wasn't rush hour and people weren't at the workplace. Most of them were home, or alone where they were. They were able to gather themselves and then come gather with us. We had so very many people come to us that day. People who came and took the boys so we could handle the business of a police interview and a trip to the hospital. People who brought food and drinks. People who just came and sat and accepted that at one minute we were laughing and then the next crying and then again laughing and then sometimes, asleep.<br />
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It feels like it has gone so fast, and that time has dragged almost immeasurably.<br />
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Today, we'll go to an early basketball game and cheer on our youngest. But beyond that, we may not really do much except be here, and we invite you to come be here with us as well. We'll light the candle in his lantern given to us by dear friends, and put up photos of him, and hang out and be as kind to each other as our slightly-less-bruised hearts can be.<br />
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Just don't bring lasagne. We're still not ready to eat that again after 6 years ago.chunkinsbloghttp://www.blogger.com/profile/03437469379640787120noreply@blogger.com4tag:blogger.com,1999:blog-15830845.post-27131779674609668472019-10-24T16:12:00.000-04:002019-10-24T16:12:12.631-04:00Paying It ForwardSo if you have been on my facebook timeline lately you may have seen what's been going on. But just in case no, here's a tl:dr review:<br />
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Families at our elementary school donated $$ (I set up a Google Form and was the point person) so we could all buy tickets for our crossing guard who REALLY wanted to go to a World Series game. We gave him the tickets Wednesday AM. It's gone a little viral.<br />
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Anyway, people keep thanking me for this. I keep deflecting it. All I did was set up a Google form.<br />
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I thought a lot about this in the last two days. What it comes down to for me is this: about 5 years ago I really wanted tickets to see Foo Fighters at a show in Richmond. I put that out to the universe (via social media) in a bit of a snit.<br />
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THE UNIVERSE DELIVERED.<br />
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I thanked a lot of people, and to this day feel a debt of gratitude for all the efforts made on my behalf.<br />
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Our crossing guard, Jeff, is a friend to all. He has been a stalwart and smiling presence at school since late 2014. We all love him. He may not even know my whole story (though if he reads this, he'll learn in this blog) but my need to pass the good on, especially to someone who makes our kids' days brighter, has been weighing on me since September 2014. Just knowing I could play a part in filling his bucket made the craziness worth it. <br />
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I'll never be done paying it forward, but I'm thrilled that not only was I able to help out in this, but also that the attention it's getting is resoundingly positive. If you go and Google "Mr. Jeff" in the news tab, you'll see he's trending. I can't think of a person who deserves the recognition more.<br />
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Go Nationals! Finish the fight!chunkinsbloghttp://www.blogger.com/profile/03437469379640787120noreply@blogger.com0tag:blogger.com,1999:blog-15830845.post-24323707711339810442019-07-26T15:37:00.001-04:002019-07-26T15:37:34.487-04:00Rainbow ConnectionIf you have been on social media, you may have seen that The Muppet Movie is celebrating it's 40th anniversary, and Fathom Events is showing it in theaters for two nights. You've missed one...it was last night. You can still check for July 30. I strongly recommend.<br />
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So if you know me, you know I have had a lifelong affinity for the Muppets. I think (and have always thought) that they are wonderful. I remember finding out when I was a junior in high school that Jim Henson had passed away so unexpectedly and I cried and cried and cried. It was not the first time my family thought I was maybe over-dramatizing something...and not the last. But I was heartbroken. Who would give voice to Kermit, who was my guiding star of Muppet-ness? He is, in my very biased and unable-to-be-convinced-otherwise opinion, the absolute Best of them. He is kind and thoughtful and works towards a solution when something goes haywire (and if you ever watched the Muppet Show, you know that something always goes haywire). But he's not a paragon. He gets irritated. He yells. He gets frustrated and waves his arms wildly and makes THE FACE. You know THE FACE. It's literally my favorite thing about Muppetness. This face:<br />
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RIGHT? It's the best.<br />
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And after he gets irritated, he recovers, and apologizes, and works again towards a solution. He's awfully human for a Muppet frog.<br />
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When I was, I guess, 7, my mother was in a choir where we lived in West Virginia. They did a concert of show tunes one season, and it happened to be after The Muppet Movie premiered. They decided to have a group of children sing "The Rainbow Connection" at the concert. It was my first public performance. I don't think there is any record of it, but I have flashes of memories from rehearsing it with my siblings and the other kids. What I remember most is that at the end, we were to walk offstage holding hands and swinging our arms to the ending "La-da-da-di-da-da-dooo...."<br />
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Fast forward to 1991. I was asked (or maybe I made it happen. This part is unknown now) to sing a song at the mass during our graduation weekend from high school. I said, "Sure - no problem. I'll sing this song." and plopped down the song "I'm Going To Go Back There Someday" which Gonzo sings near the end of the Muppet Movie. I'm certain that the teachers and administration asked me to sing a hymn. But I sang a song from the Muppet Movie instead. My dear former teachers, I'm sorry I was such a pain. I recall thinking when I was 17 that I wanted to sing this song because it speaks so plainly about wanting to go discover new things, which is what I thought (think) graduating high school and going to college was about.<br />
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Yesterday, as I went through my day knowing that I would be seeing the Muppet Movie in a big theater again, I started thinking about how I've had Muppets deeply embedded in my life for it's entirety. In college, for 2 years, I sent out Muppet and Sesame Street songs to a list of friends on an integrated voicemail system every dang morning. When I graduated from college and moved to Arlington, I decided to join a band. Then I learned there was a band named Gonzo's Nose and it was like, welp, yeah, that's the one for me. (Conveniently, they liked me too...). Last night, I went with Steve, who is the drummer and came up with the name of the band, to see the movie. <br />
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When I got married, I danced with my father to "It's Not Easy Being Green" performed by Ray Charles. The song because I love Kermit and the Muppets, and the performer because my father loves Ray Charles.<br />
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Before we headed out last night, I ran upstairs to change. I rummaged through the drawer of funny tee shirts, thinking <i>I can't wear a Muppet shirt...trying too hard. </i> I ended up grabbing an old navy blue tee shirt. It has an outline on it of West Virginia and says "Almost Heaven." I tossed it on, then later thought, "Huh...that's where I lived when this movie first came out, and a place that's deeply embedded in my heart just like the Muppets."<br />
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Basically, the Muppets are seamlessly entwined in my life and consciousness, and I never realized it until this movie turned 40. These characters and songs and bits and everything all came along and delighted me (I hated Miss Piggy and still do but I had a stuffed pig as a child so you can already guess what it's name was...) and it turns out, just loving them this much has brought a lot more love into my life. When I went to see it last night, my 12 year old went with me. He laughed so hard he cried. "Mom," he said, "This is <i>so funny </i>!!" I know, honey. The best part of the Muppets, always, is that they absolutely love themselves, and that they are funny.<br />
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It kind of makes me want to be one.<br />
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<br />chunkinsbloghttp://www.blogger.com/profile/03437469379640787120noreply@blogger.com0tag:blogger.com,1999:blog-15830845.post-45971264370791209262019-04-09T09:52:00.001-04:002019-04-09T09:52:29.074-04:00For Dear Old UVASo, yeah, I'm a basketball fan. And I'm an alumna of the University of Virginia, which means that for as long as my life has been, I've been accustomed to "my team" losing. There have been periods of greatness (men's basketball in the early 80s with Ralph Samson, football in 1990-1991 when we actually ranked #1 for a whole week, baseball in the past 10 years) and I'm absolutely certain that people will tell me in comments about things I've missed. That's okay. I know I don't have a comprehensive knowledge of this. Because really, my focus has always been men's college basketball, particularly the annual tournament.<br />
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When I was little, I so desperately looked up to my sisters, and especially to Shannon. As the one closest in age to me, she was the most likely target of this adulation, and also the one whose actions I could copy fastest. Shannon played basketball, so therefore, so did I. We were never similar players. She was taller, and tougher, and frequently fouled out at her games. I learned to keep the book at her basketball games as our father often handled that for the team and he made sure to teach me as he did it. She taught me how to dribble, how to pass and how to shoot. As a shorter and less aggressive player, I gravitated towards the point guard position and played it for 3 years. I think I made roughly 10 points in my storied CYO career. But I ran the floor, and I loved it. We went to basketball camp together (and when he was old enough, our brother joined us) every summer, but never played in the same leagues due to age difference. And every March, we watched as many games as we could get away with. It was at the beginning of this time that UVA Men's basketball had Ralph Samson, and led the NCAA Division 1 and went to the Final Four. I remember not liking NC State at all (they kept beating us!) but now, as an adult, I look back at that and all I remember is The Shot and Jimmy V. And I love Jim Valvano. Hindsight and all.<br />
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We live in different cities now, but we text during every game we can.<br />
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Fast forward a bunch...like about 30 years. Tony Bennett comes to UVA and starts building a program, and despite it looking like it won't succeed because it's defense focused and slower paced, it does. The recruitment team pulls more and more successful players in to UVA. The school and the alumni started to believe we could do it.<br />
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Here's the thing about UVA and sports. We never expect our teams to be tops. It's just not how we proceed. Many students choose UVA for the academic opportunities. I get teased constantly about our abysmal record against Virginia Tech in football, and my response is always that the quality of my degree is not impacted by the football team. Our alumni ranks are always waiting for the other shoe to fall when it comes to athletics.<br />
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So a year ago (plus a few weeks) when the men's basketball team notched the first historic #1 seed loss to a #16 (in the men's tournament. It irritates me to no end that it had in fact happened years prior in the women's tournament, but because women did it first, no one gave a shit because we all know women don't count. But I digress.) I sat on the sofa aghast and crying. I wasn't sad for me. I was heartbroken for the team, for Kyle and Ty and De'Andre and Jack and Devon and Isaiah, and all the other players, and for Tony. To know that for the rest of their lives, they would have this attached to them, and be asked about it, and worse...it just broke my heart. I cried again the next morning when I told my sons about the loss.<br />
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When the season started, I was nervous. We all were. How do you step back out on the court after that? We were at the game - my Dad got us tickets. UVA won. And then they kept winning, until full-strength Duke. But every game I was afraid we would lose, and I wasn't happy with a small lead. I needed the leads to be significant so I could remain calm. And many times, the leads were significant.<br />
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Then came March, and another #1 seed placement. That first game was TERROR. And you know I spent half if it in the car because they played better when I was not watching. As they advanced by each round, I spent three hours in thrall/angst/elation/horror, which has not been good for me. I've been clenching my jaw at night and I have stress hives. Because of a game.<br />
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And they won last night, and finished their "redemption season" as National Champions. And I sat on my sofa (and also paced around my sofa) crying, again for those boys. For Kyle and Ty and De'Andre, and Jack and Kihei and tournament-strong Mamadi. For Braxton and Jay, Austin and Grant, Francesco and Francisco, and Marco and Kody and Jayden. For the managers. For the coaching staff, especially Jason Williford, who played when I was a student and was team captain in 1995 when they made it to the Elite 8. Now he's helped his beloved Hoos go all the way. And that brings me so much joy.<br />
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I know that no place is perfect, and UVA is included in that. Like any other place, it has history which has minuses and pluses. To me, it has always been Dear Old UVA.<br />
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So if you see me and say congratulations and I tear up, don't mind me. It's just my joy seeping out.chunkinsbloghttp://www.blogger.com/profile/03437469379640787120noreply@blogger.com0tag:blogger.com,1999:blog-15830845.post-14971140896377296262019-02-06T15:30:00.001-05:002019-02-06T15:30:27.736-05:00ResilienceMany of you know that last week was the anniversary of Connor's passing. Five years have gone by, feeling both like the longest period of time ever, and the shortest. We're on the cusp of what would be his 15th birthday coming up. Sometimes it shocks me that I've been a parent this long now.<br />
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When Connor passed, we asked people to plant trees in his honor, and many did. I wish I could see all the trees in person, and maybe one day I will.<br />
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My friend Anne from high school is an Arborist and designer. She planted a tree in Islamorada, Florida in Connor's honor. I've seen Anne <i>maybe</i> once<i> </i>since high school - at our 20th Reunion, but she didn't hesitate to plant that tree.<br />
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And she clearly did it just right, because last week on the anniversary of his passing, she sent me this picture and told me that the tree, still quite young, somehow managed to survive Hurricane Irma, which went right through the Keys. It survived 130 MPH winds and flooding. It is resilient. Just like he was.<br />
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We were told he was unlikely to make it to his 2nd birthday, maybe not his first. He made it almost to his 10th.<br />
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We were told he was unlikely to be able to continue eating on his own. He never once had a feeding tube.<br />
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We were told he was unlikely to have any capacity for holding his own weight, and while he never stood solo, we have a few photographs of him sitting with no assistance and no strapping. Just him and his abs.<br />
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He was the very definition of resilient.<br />
<br />
Many people think that Lee and I are resilient ones - we advocated and cared for him, we continued building our family, we took each blow with as much grace as we could muster. But none of that would have been possible for even ten minutes without everyone around us who helped in myriad ways. I think all of us are more resilient than we think. As long as we keep talking to each other, and more importantly, hearing each other.<br />
<br />
Keep growing, little tree. Someday, hopefully soon, I'll come see you and bring some of the soil from Connor's garden down for you, so you can add his resilience to yours.<br />
<br />chunkinsbloghttp://www.blogger.com/profile/03437469379640787120noreply@blogger.com0tag:blogger.com,1999:blog-15830845.post-17376564163038184292018-11-21T09:17:00.002-05:002018-11-21T09:17:37.320-05:00An Unanticipated ThreshholdI know it's been very quiet here this year. It's been a difficult year, especially for one of my sons and in the interest of protecting his future employments I have not posted about it. As someone who worked for almost 15 years in hiring...the internet is forever.<br />
<br />
However, I was talking about this person this week, and said out loud for the first time, you know when he turns 10, he'll have lived longer without his brother than with his brother.<br />
<br />
I'll let that sink in. He'll just be hitting double digits. I'd have to live to be 84 and a half or so to reach that particular count.<br />
<br />
Anyway, I couldn't get that sentence out of my head for hours afterwards. It just rolled around in here, bumping up against all the things I really needed to be thinking about. Finally, I pulled up a browser on my phone and looked up the days between Tucker's birthday and the day Connor died. It told me 1753 days are in that range. Then I started with the day Connor died and went to Monday.<br />
<br />
It told me 1752 days.<br />
<br />
Yesterday was the halfway point. After yesterday, the rest of his life will always be longer than his life with Connor. Today is the official start of that.<br />
<br />
Why did I phrase that in a way that would cause this to become the main thing I was thinking about? I mean, I know myself pretty well (I think) and I had to have known that a toss-off remark would implant itself into my subconscious until I knew exactly what those numbers were.<br />
<br />
In any case, here we are. He'd the first to reach this threshhold. Drew's will be a few months after he turns 14. That's 2021. I guess I can let this lie fallow until I get closer to that.<br />
<br />
<br />chunkinsbloghttp://www.blogger.com/profile/03437469379640787120noreply@blogger.com0tag:blogger.com,1999:blog-15830845.post-2162116311163615112018-09-27T13:06:00.001-04:002018-09-27T13:06:09.092-04:00The Quality of LuckI have spent the better part of the year feeling down in the dumps, mopey, Eeyore-esque. I'm fortunate in that I can feel this, and that I can wallow in this and still go about the must-doings.<br />
<br />
The last several weeks have had "lucky" come to mind a lot for me. We are all being affected, somehow, by what is happening in our world. Our world, right now, is fractured by a virulent and overwhelming argument about men and women and power and bravery and fear and justice. I am sure there are other factors, but those are the ones that roll off my tongue.<br />
<br />
This is how I know I am lucky. I have, as a female in the world, encountered abuse, sometimes from co-workers, sometimes from friends, but I have never been truly assaulted, and for that, I am lucky. LUCKY.<br />
<br />
Any person's safety and well-being, both physical and mental, should never, ever come down to that.<br />
<br />
When words intended to subdue, or objectify, or humiliate me were casually or deliberately thrown my way, my immediate reaction, each time, was to throw them right back. How dare you say that to me? How dare you ask that? What is wrong with you that treating another person like that is all right? Where is your humanity? And when it happened, usually in a co-ed and public place, everything quieted down, for a while afterwards. I cannot say that it never happened again. I can only hope that it didn't.<br />
<br />
I never feared because I had my voice. And that makes me lucky, because there are so many out there whose voices aren't giving them the courage and the confidence and the righteousness to raise up their humanity and hold it above someone who would subvert it.<br />
<br />
I may start coming out of the funk, and I may not. And during this funk, my voice has been a little lost. Today, Dr. Ford used her voice, despite terror and horror of memories no one should ever have. Today, I start to use mine again.<br />
<br />
<br />chunkinsbloghttp://www.blogger.com/profile/03437469379640787120noreply@blogger.com0tag:blogger.com,1999:blog-15830845.post-91100024599465529162018-05-03T15:21:00.003-04:002019-02-06T15:15:10.814-05:00Wonder<br />
I can't believe it's been almost 3 months since I wrote something. I'm very sorry. Life keeps happening and it's exhausting and you all know that drill, right?<br />
<div>
<br /></div>
<div>
This morning, Tucker and I attended the Annual Breakfast for Homestretch, the organization he has been raising money for. We got up extra early and got dressed up (mostly) to attend this event. The executive director had invited us to attend, and so we were seated at table 2. There were sixty tables in all. Six hundred people who were either benefactors or beneficiaries were in attendance. </div>
<div>
<br /></div>
<div>
When the program started, a man came to the empty chair next to Tucker and asked if he could sit there. He introduced himself to Tucker, then me. I recognized him already anyway - he is Rip Sullivan, a member of the Virginia House of Delegates (48th district) and local guy. He engaged Tucker throughout the event, asking questions, complimenting him on his style, and more. At the end of the event, several of our table-mates gave Tucker their business card. He can't wait to call his new friends. </div>
<div>
<br /></div>
<div>
What's more, he told us that he wants to raise $5000 more this year for Homestretch. He went to the head of my company and asked if we could work together to help him raise that money, and she said of course. So now I need to set up a business meeting with the head of my company and my 9 year old. That'll be interesting! Maybe I'll facebook live that...??<br />
<br />
What strikes me about all this is that Tucker is <i>so inspired</i> to raise funds for this group. He pledged to raise that extra money without a second's hesitation. He sat and patiently listened to the presenters at the Breakfast today, many of them beneficiaries of Homestretch, about how being a part of their organization improved their lives and how grateful they are. He can't even watch a 20 minute cartoon sitting still. but there he sat, hands folded nicely, listening. He is a wonder.<br />
<br />
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chunkinsbloghttp://www.blogger.com/profile/03437469379640787120noreply@blogger.com0tag:blogger.com,1999:blog-15830845.post-75161300177440951412018-02-13T11:41:00.001-05:002018-02-13T11:41:34.185-05:00A Letter To My BoysToday I felt better again. Better inasmuch as not like I'd been run over, and could actually sustain a thought process over more than 2 minutes. Huge improvement. I actually took Jack on a walk this morning, and that's when I had this kernel get planted in my brain. It's germination period, as it happens, was surprisingly fast. Here goes...<br />
<br />
Dear Males In My House,<br />
<br />
I am so lucky that each of you is here with me. Because of you, I have a happy life of which I am very proud (Mom, I rewrote that to remove a dangling preposition. You are welcome). I've been thinking about how I've been acting in my own home, my favorite place in the whole world, and I'm not very happy with that I'm recalling. So I'm making you a promise now to stop.<br />
<br />
I've been complaining. A lot, right? It is exhausting to clean up after you when you don't care to clean up after yourself. It does make me feel like I am failing at parenting when you don't know how to do these things. I don't expect you to WANT to. I didn't want to when I was your age. I don't <i>want</i> to now. I just know that it has to be done. So I do it.<br />
<br />
Lee, you take care of so many things even though you don't recognize it. You set up coffee so it's ready in the morning, a necessary part of me being able to function. You work really hard every day so that we can live here, on Pocomoke, where we LOVE, and even when things are hard you get up and go back in. You make time for yourself in the shop or on the bike (or both) because you know that your brain needs that so you can be present with us when you are here. Then when you are present, you find what the boys like, or need, and you make it happen.<br />
<br />
Drew, you are just beginning to really learn where your wings are, and it's really exciting to see them start to stretch! I love watching you learn to show who you are with confidence to the world as you move from elementary school to middle school, and then beyond. You've really started pitching in around the house. It's noticed, and it's so deeply appreciated. I am enjoying teaching you basic things like how to do laundry (from into the machine, through folding and back into the drawers...except for sheets. No one can fold them.) and your cooking skills and interest make me believe that when you leave home, you will not be ordering in constantly or eating only boxed macaroni and "cheese". I hope.<br />
<br />
Tucker, you sometimes seem like a knotty shoelace that does not want to untie, but once you get past that first snarl, your good humor shines through. You love a good joke, and you want to share it with everyone you see. You decided late last year to be a part of your community in such a large way, fundraising for families...kids!!!...less fortunate than you, and it makes me so proud that you see these problems and instead of laying blame at anyone, you simply pushed up your sleeves and said, "I want to help." and you did. You are an inspiration to me.<br />
<br />
So, despite the fact that I haven't been active in the Catholic Church in many years, I am making a Lenten sacrifice, and I hope it's one that makes me better, and makes you better. Many years ago, I realized as I drove your brother back and forth to day care on my way to work that I was yelling <b>TERRIBLE</b> things in the car at the other drivers while he listened. For Lent that year, I gave up road rage. It was hard, and I didn't always succeed, but I'm far more controlled in the car than I used to be. I hope that my giving up complaining has a similar effect on how I speak, and maybe, a little can rub off on others around me.<br />
<br />
I love you guys, all of you.<br />
<br />
Mom<br />
<br />
<br />chunkinsbloghttp://www.blogger.com/profile/03437469379640787120noreply@blogger.com0tag:blogger.com,1999:blog-15830845.post-87075731928694022002018-02-06T17:55:00.001-05:002018-02-06T17:55:49.228-05:00Warts and AllI bet you were all wondering...when is she gonna write? The anniversary just passed by us, and nothing on the blog.<br />
<br />
Well, it's been a really rough year so far. And the year is only 37 days old. I write less often now because it feels redundant and I don't think I have new things to say, and I don't want to waste a reader's time. But here's the reality: things have been really hard, and I don't want to write that it's hard because I feel that you come here to read about strength.<br />
<br />
So, anyway, there you have it. I'm going to make an effort to be more authentic on this blog this year, which means that you get me warts and all.<br />
<br />
So, one of my boys is really having a hard time. It's not easy being the parent of a special needs child who cannot care for him- or herself. It's also not easy being a parent of a fully capable neurotypical child who cannot or will not behave himself. It's staggeringly draining, physically and emotionally (and occasionally financially). It's hard to not lose your temper all the time when he is being difficult just to be goddamn difficult. Just so that we will see him. Why doesn't he realize that we see him all the time. ALL THE TIME. We're actually pretty good about parental technology around them. We try to draw lines, abide by our own rules. Sometimes we can't, but we usually do.<br />
<br />
And yet...no credit is given.<br />
<br />
On top of that, I've had several friends lose parents recently, and we've come to realize that we are entering that shifty, ugly period of our lives where there are no more weddings to attend, but an increasing number of funerals.<br />
<br />
And on top of that, it's a slow start business-wise this year. That's really not a terrible thing other than it's terrifying.<br />
<br />
But today marks 4 years since I stood up in front of a standing-room only church and said my public good-bye to Connor. We still speak to him as we feel it needed. Last week, the night of the "anniversary," Jack the dog had a dream that caused him to try to bark in his sleep. This almost never occurs, and never at night. This time, it was at night, before we feel asleep. I thought to myself, 'Is that Connor reaching out to us again?' And then Lee said out loud, "It's like Connor is saying hello."<br />
<br />
Weird, right?<br />
<br />
In the meantime, the future keeps falling upon us, taking us further away from the time when Connor was with us. Pushing us towards the time when our parents may not be with us any more. We all have time on this Earth, but sometimes, it feels like time is the greatest thief of them all.chunkinsbloghttp://www.blogger.com/profile/03437469379640787120noreply@blogger.com0tag:blogger.com,1999:blog-15830845.post-63048281991378681072018-01-17T13:51:00.001-05:002018-01-17T16:46:17.324-05:00ExcavationsSo, new year, new approach and all, right?<br />
<br />
In the week between Christmas and New Years, we decided to clean out a storage closet that has been terribly abused since we moved in 16 years ago. It took only about 30 minutes to get everything out. It took about an hour to "organize" into categories, and another hour to start disposing of the obvious garbage. Eventually, we got down to having to go through boxes. My first box was almost 100% Connor stuff, marked Connor 1st Year. Cards from the baby shower. The baby book we kept for 6 weeks until it became apparent he wasn't the same kind of baby all my friends had at home. Cards from his birth. Cards from his baptism. Hospital bracelets.<br />
<br />
"Look!" I said, "I found our hospital bracelets from when Connor was born!" His brothers thought it was cool. I brought them upstairs to go into his memory box in my closet, already stuffed to the absolute limit. Upon closer examination, alone, I discovered that they were actually our bracelets from when he was admitted upon diagnosis of Infantile Spasms. Into the trash they went. We don't need extra reminders of that weekend.<br />
<br />
An envelope, tiny, clearly re-purposed from a small card that arrived with a gift from my sister. On the front, I had crossed out the writing and labeled it "Connor's First Haircut 7/20/04" Man, that kid had HAIR. It changed - he was almost a redhead at birth, but then transformed into this light, light brown (or dark, dark blonde, depending on how you look at it). But oh my, I still have part of him here with me. His DNA is in my possession. It makes me so happy, and so sad.<br />
<br />
The box held photos (kept) and artwork (tossed - he never really made those items in daycare, despite all the effort his caregivers provided) and PAPER. SO MUCH PAPER. Almost all of it gone now. One birth certificate, saved of course. THREE birth certificates of his younger brother. Clearly I did not have a good filing system.<br />
<br />
Then we decided to take an armchair out of our bedroom for unrelated reasons, and behind that chair were almost all of the things of his that I saved. Now they are on display to us, a day and night visual reminder that no one in the family needs. I probably need to go through those and winnow. Each passing day, month and year gives me the chance to review if I have something because I need it to be with me, or because it has his name somehow ascribed to it. Sometimes, I know it was a knee-jerk reaction to the death when it happened. I'm okay with that. Grieving is unpredictable and a process and a burden and intensely, intensely personal. For us, it will be part of our lives every day, even infinitesimally, until we die.<br />
<br />
Drew was asked to make a family tree in one of his classes. He proudly told me that he included Connor on the tree. I told him it was the right thing to do. No matter what, he is a part of our family.<br />
<br />
The anniversary is almost here, again.chunkinsbloghttp://www.blogger.com/profile/03437469379640787120noreply@blogger.com0tag:blogger.com,1999:blog-15830845.post-33286493931291452362017-11-14T12:49:00.000-05:002018-01-03T16:25:29.101-05:00The GigWhat's become an annual event happens tonight. Quarter Mexican will play a benefit for the Arc of Northern Virginia, which we've done every year since 2014.<br />
<br />
That first show was hard. We'd agreed to a show before he died, but we honored our agreement because that is what felt right. Then, 4 days before the benefit, I got the news that I had skin cancer, which wasn't the end of the world but very much felt like 2014 was really trying to defeat me. Our gig was outdoors, it was July, and I was terrified of it for more than one reason. Performing in the band at the point was not only his mother (me, duh) but his aunt, uncle, and godfather. It was really emotional for 2/3 of the band. Friends came out in droves to support the event, and at the end it was fun, but man, was I worried what would happen if I started crying mid-song.<br />
<br />
This show is hard because this us the first year I've taken the reins to make it my own event. In some ways it's been really rewarding as I've brought in my new colleagues from the company I joined in February, and arranged to go back "home" for the show. We're performing tonight at Clarendon Grill, almost 20 years to the day of Gonzo's Nose's first anniversary show there, in November 1997.<br />
<br />
This show also always brings Connor right back to the very front of my mind. Last Friday, we were at my parents house helping them prepare for a yard sale, and the bed rails my parents had for when we visited with Connor were in the pile of "to be sold" items. I hadn't seen one of those in more than 3 years, and it made my cry unexpectedly. Not so much a trap door as a misaligned brick that I tripped over. Either way, the worst part was that I may have upset my mother with my little outburst.<br />
<br />
Last week I also had my first ever appointment with a therapist. I'm not really very interested in therapy but it's part of the process for the family, so I do it.<br />
<br />
The road is rough, and lined with the unexpected. We keep walking.chunkinsbloghttp://www.blogger.com/profile/03437469379640787120noreply@blogger.com0tag:blogger.com,1999:blog-15830845.post-26384185107759332062017-09-11T15:14:00.000-04:002017-09-11T15:14:32.690-04:00"The Talk"It's been a very quiet time here, but not because it was quiet elsewhere. It was busy, at times crazy, and I felt like all I would do here was complain and that wasn't worth your time. So I stayed quiet.<br />
<br />
No one is quiet today in America.<br />
<br />
I woke up today, and the first thought I had was <b>not</b> `It's 9/11' and I think it may be the first one in 15 years where I didn't think about it the second I awoke. Is it that 15 years is the time it takes for the memories not to assault you the moment you are conscious, or that now that we have a dumpster fire "leading" the country, it isn't possible for 9/11 to be the first thing in our minds any more because we are too worried about healthcare, or immigration, or the integrity of our voting process, or education, or basically any facet of our day/life?<br />
<br />
I wasn't looking forward to today because today I went in to Tucker's class to talk with them about Connor. I'm pleased to report that Tucker spoke a lot more this year, and far more openly, than he has in the past with his peers. They were all quiet and respectful (yay, Mrs. Ready!!) and had only a few questions. I'm really hoping that this is the last year Tucker needs me to come in with him to do this. Not because I won't, or don't want to, but because I want him to be confident enough in himself to feel free to talk about Connor and to answer questions about him without feeling like he needs an adult to explain everything.<br />
<br />
I asked Tucker at the beginning today, "Would you call Connor your first best friend?" and he knit his eyebrows together and said, "Yes." and then proceeded to tell his class how affectionate he always was towards his brother. This is a true thing - he was ALWAYS affectionate towards Connor. Connor never got lip from Tucker. The only human to date who never got lip from Tucker. Another amazing thing in Connor's list of amazing things.<br />
<br />
<br />
<br />chunkinsbloghttp://www.blogger.com/profile/03437469379640787120noreply@blogger.com0tag:blogger.com,1999:blog-15830845.post-64090155924548538832017-05-04T16:10:00.004-04:002017-05-04T16:10:54.599-04:00THEY DAREDJesus.<br />
<br />
They dared. They <i>dared </i>to decimate Medicaid and to institute considerable limitations on pre-existing conditions.<br />
<br />
Now I'm seriously considering starting a foundation specifically funding assistive technology for underserved disabled individuals.<br />
<br />
And how on earth do I do that? On top of everything else.<br />
<br />
I am in the 1%, I know it and I am grateful for all that I have. It never would have occurred to me that I would have to fight other people in my socio-ecocnomic strata so that the disabled community isn't left to wither away.<br />
<br />
Shit.chunkinsbloghttp://www.blogger.com/profile/03437469379640787120noreply@blogger.com0tag:blogger.com,1999:blog-15830845.post-60964815116688200662017-03-15T14:34:00.001-04:002017-03-15T14:34:59.328-04:00Dear Republicans....I don't want to be judged. This means I spend a lot of time preventing myself from judging, as I grew up with the whole "judge not lest ye be..." mentality. Well, eventually.<br />
<br />
But I have to ask, and I'm going to do this in letter form, and it's CRAZY judgy...<br />
<br />
Dear Congressional Republicans,<br />
Why do you want to eviscerate and undermine Medicaid? Perhaps you are lucky. Perhaps you've never truly known a person or a family with deep, long-term special needs or disabilities. If that's the case, I am happy for you. I do know what that is like. My husband and I are both solidly middle-class in upbringing. We both attended strong universities, received our Bachelor's degrees in the originally-intended 4 years, and we got to work. Became contributing members of our great society. I made less money than him (still do...but this isn't about gender pay parity). We are LUCKY. We worked hard. We had money when we were growing up, and truly wanted for nothing necessary. Sure, I wore hand-me-downs. But my parents also paid for a private-school primary and secondary education for me, so I'd be a leg up when I attended college. I went to a top 20-ranked University, thanks to that primary and secondary education, and I graduated with a 3.4 GPA at that competitive level. None of which was paid for by student loans, Pell grants, or other funds sourced from outside my family.<br />
<br />
We bought a house. We started a family. Then the record screeching happened. Our son was born with an ideopathic seizure disorder that rendered him incapable of caring for himself ever in any way. We signed him up for insurance under both our companies. That meant our healthcare costs were doubled to begin with. And to add insult to injury, we discovered that we, as the parents and legal guardians of our son, did not have the right to pick which insurance would be "primary"...a decision we wanted to make because one plan was clearly superior to the other. Sadly, the insurance companies picked for us, or rather, against us. But we persevered, because it wasn't our son's fault that health care was so messed up.<br />
<br />
Then, when he was about 5, we came off the EDCD Waiver list, and he had waiver funds through the state and was signed up for Medicaid. Now he had three insurance providers. Even more complicated, but we applied our combined brain power to navigating it. Moreover, it took more than 6 months to get off that list, and months of paperwork that we had to be mentored and guided through because it's complexity was staggering. We both speak English as a first language. We shouldn't need documents in English to be interpreted for us.<br />
<br />
Medicaid made sure our son had diapers. They don't make diapers commercially for children larger than 30 pounds -- then you move to pull-up diapers, which he could not use. The next size up commercially available was for adults. Our son, who never made it to adulthood, would have been up shit's creek (kind of literally) had Medicaid not supplied this basic necessity. <br />
<br />
When our son needed a specialized wheelchair for transport to and from school, the cost that was quoted to us exceeded $6000.00. And of course, we could have dipped into savings to buy it, but the three insurance carriers sorted it out and covered it together. We are lucky that a $6000.00 cost wasn't going to break us. But we know this community, and not everyone came from affluence, or lives in affluence now.<br />
<br />
These are just a few areas where Medicaid supported my son, and as a result, the rest of our family. We are eternally indebted for this support.<br />
<br />
If you think for a SECOND that there were "'death panels" in the Affordable Care Act (and I know some of you do) then you can be damn sure that thousands of Americans will die because their Medicaid will evaporate with your new plan to push that back to the states which cannot afford to make up the lost funding, and they won't have BASIC CARE.<br />
<br />
So, how do you feel about that? Do you feel that consigning a disabled person to death because you don't feel that it's fair to be covering them at "your expense" is reasonable? I expect if the answer is yes, that you have never truly known someone disabled, or who is a family member in direct care of a disabled person. That makes you lucky. But it doesn't make you knowledgeable about how difficult every day is for those individuals (many of whom were born into their disability) or their families and caregivers. And it doesn't make you right. The community of the disabled and their families see you...the providers of healthcare in American see you...the world sees you. They see you grubbing after money and abandoning those who cannot provide for themselves...an abandonment of our society. So then I need to know...<br />
<br />
How <i>dare</i> you?<br />
<br />
Sincerely,<br />
A former Special Needs parent, and a human firstchunkinsbloghttp://www.blogger.com/profile/03437469379640787120noreply@blogger.com0tag:blogger.com,1999:blog-15830845.post-59876024229957867362017-02-10T19:54:00.001-05:002017-02-10T19:54:17.973-05:00When your new status of WOKE inadvertently lands on your 10-year-oldSo yesterday I really started to embrace my new FIRED UP READY TO GO WOKE status.<br />
<br />
This morning, I got up, showered and dressed for an early appointment. I came downstairs in my dress and slippers to get breakfast ready for the boys. Drew sat there in his bar chair and said, "Mom, your skirt is too short."<br />
<br />
FIRST OF ALL: WHAT WHAT WHAT????????????????????????<br />
<br />
I should explain that all this occurred pre-coffee as well.<br />
<br />
I said, "Excuse me?" and his face fell. He started to sputter. I held up my index finger (even though Id had no coffee I managed not to give my kid the Finger). Then I said:<br />
<br />
1. What I choose to wear any day, work or personally related, is none of your business.<br />
(add in the second finger)<br />
2. What YOU choose to wear any day is none of anyone else's business.<br />
(add in the third finger)<br />
3. What exactly is too short in a knee-length skirt?<br />
<br />
He had no response. I guess sometimes the best parenting is so organic and unexpected that you have to capture that moment, that lightning in a bottle. I think I did okay by ensuring that he knows that his opinion on how someone, especially someone female, is dressed has no bearing on him in the least. But along the same lines, how he dresses has no bearing on anyone else's life. And he will not shame a person for their sartorial choices. Not once in my house. Not once in my presence. Not once while I am teaching him right from wrong.<br />
<br />
Poor kid walked right into my new status, and I don't think he know what hit him. But I hope whatever hit him sticks in the most positive of ways...chunkinsbloghttp://www.blogger.com/profile/03437469379640787120noreply@blogger.com0tag:blogger.com,1999:blog-15830845.post-43327322867337900162017-02-09T16:49:00.003-05:002017-02-09T16:49:43.144-05:00WOKEWOKE.<br />
<br />
That's what I feel today.<br />
<br />
Today, I celebrate the birth of my IEP baby thirteen years ago. Eight days ago, I mourned the anniversary of his passing.<br />
<br />
And every day, I am now more open, more welcoming, more accepting, and more aware. We have a new sheriff in town, and I do not like his education deputy. The extraordinary education of our special needs population could hang in the balance, and today, I thank God that as a parent, I am not as worried as some of my friends, because my special boy's time in the education system ended abruptly a few years ago with his passing. Now...I have more time and energy to give to THEM, and their special babies, to help be sure that the exceptional teachers who helped us, and helped him, still have ways to meaningfully contribute to educating all the members of our next generation, they typical and atypical.The IEP process isn't the pinnacle of efficiency. How could it be - it's an instrument of the government. But it is better than nothing. Giving parents "choice" to take their students otherwheres and removing federal protections cannot reasonably support a family already overencumbered with a lot of hard knowledge.<br />
<br />
A lot of you know what it's like to have an atypical kid, because at the core, we're all atypical, some just more than others. Now, add into that having a language barrier because up until about 10 days ago, we were a country that welcomed everyone. Can you even fathom explaining a metabolic condition to someone whose first language isn't English? Medical terminology is hard. It's HARD. It turns you into someone you weren't - overinformed, exhausted, replete with the knowledge of how something is supposed to work and how your child's particular case doesn't work.<br />
<br />
And then they want to translate that into educational terms too.<br />
<br />
It's utterly overwhelming. Since I'm not overwhelmed by that any more, but still burdened by my knowledge, it's time to turn it on to help Connor's classmates, his friends, his community.<br />
<br />
I see it all, and I won't let them take education away from our most fragile citizens.<br />
<br />
WOKE, friends. In honor of Connor.<br />
<br />
<br />chunkinsbloghttp://www.blogger.com/profile/03437469379640787120noreply@blogger.com0tag:blogger.com,1999:blog-15830845.post-75245415591604326262017-02-02T13:54:00.003-05:002017-02-02T13:54:46.746-05:00700%Thanks, first and foremost, to all who found a way to touch us yesterday. It was a day, very much a day, and we got through it together. It was the first time I permitted my children to play hooky. That says something. We took a family hike, had all our meals together, and Lee and the boys set up an altar for Connor.<br />
<br />
A few days before, I got home from I think basketball, and there was a package from me from my dearest Anne. If you have been reading here for a while, you'll already know that Anne and I go backc to the Utah Shakespearean Festival, and that when Connor died she hopped on the train and came down and stayed for days, helping us (mainly by doing dishes, if you ask her) and keeping the homes fires burning alongside our families who also flocked to our sides. Her daughter is one day younger than Connor. Long story short - we're tight.<br />
<br />
Anyway, I opened up this slightly lumpy package, and found this:<br />
<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgH5IwWqtJ_e3K2iM26oKGjXvNcxjJiGVy9QdsmWhcMBKH5rEJhvIQKV2_ryGec0l1Xm33mb28pFGTtRYoXSHzI7luOpseI_g8aRJJbW11kD1dZKg-rjmccCX4zyCQmK6TN9KlO_w/s1600/IMG_7864.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgH5IwWqtJ_e3K2iM26oKGjXvNcxjJiGVy9QdsmWhcMBKH5rEJhvIQKV2_ryGec0l1Xm33mb28pFGTtRYoXSHzI7luOpseI_g8aRJJbW11kD1dZKg-rjmccCX4zyCQmK6TN9KlO_w/s320/IMG_7864.JPG" width="240" /></a></div>
<br />
Then, I started to cry.<br />
<br />
700% is the overtime we had with Connor. The doctors told us he would likely die before his second birthday, possibly before his first. But he didn't. He showed us from the first moments of this dark path that he was not going without a fight. And now I have a bracelet that reminds me of him, and of his fight, that I can wear every day. If someone asks me what it means, I can choose to tell them the whole long story, or I can just say, "It's a family thing," and hope they leave it at that. But I like these reminders of him that I can wear outside, especially ones that fill me with pride because it accounts for all his fight, and our fight too. Without knowing it was happening, he gave me the gift of unending fight. And these days, there's a lot of fight that's needed, so I will wear it to remind myself that I can't give up.<br />
<br />
<br />
<br />chunkinsbloghttp://www.blogger.com/profile/03437469379640787120noreply@blogger.com0tag:blogger.com,1999:blog-15830845.post-27839134225141003232017-01-19T11:13:00.000-05:002017-01-19T11:13:07.949-05:00Last Day...<div class="" data-block="true" data-editor="4glrv" data-offset-key="d0afb-0-0" style="background-color: white; color: #1d2129; font-family: Helvetica, Arial, sans-serif; font-size: 14px; white-space: pre-wrap;">
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<span data-offset-key="d0afb-0-0">All, I've seen photos of Klansmen in full, um, regalia, in Washington, DC today. It's yet another national embarrassment that this is happening on the last day of the administration of our first African-American president. I am so deeply, deeply ashamed.</span></div>
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<span data-offset-key="d0afb-0-0">My heart and head are so battered I barely have words. My prayers are that everyone who is traveling (either here, or away from here) is safe, and reaches their destination with a minimum of disruption. My prayers are that when my boys ask me why there are people in "costume" in DC right now, I can explain it to them without breaking their spirits. </span></div>
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<span data-offset-key="b4913-0-0">On my walk this morning, I had a deep sense that tomorrow is actually the worst day in American History from my perspective and in my lifetime. Worse than 9/11. I know that's a provocative statement. Up until 2/1/2014, 9/11/01 was without question the worst day I experienced on earth. But what came from 9/11 was an overwhelming sense of solidarity; it was a day that all Americans could rally to, and say, no, NOT HERE, you cannot have another. Walking up Glebe Road, headed to my car on 9/11 after 3 hours of commuting out of the city, I could make eye contact with everyone and we felt together, despite not knowing each other, despite language barriers.</span></div>
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<span data-offset-key="b4913-0-0">Tomorrow, I don't think I can make that same eye contact. I don't expect I will feel solidarity in the same way, since some of the people walking around me may want to deport my relatives and friends, may want to eviscerate the educational process for all students (especially my dearest children with special needs), may want to take away my rights. This is why it's worse. I am only one voice to fight for what I believe it right. </span></div>
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<span data-offset-key="b4913-0-0">We're back to a nation divided. So fractured, I'm a little paralyzed as to where to start.</span></div>
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<span data-offset-key="b4913-0-0">Be peaceful if you can be tomorrow, friends. We all need kindness, every day. That can be my first goal. It's a great cornerstone upon which to rebuild our national identity.</span></div>
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chunkinsbloghttp://www.blogger.com/profile/03437469379640787120noreply@blogger.com0tag:blogger.com,1999:blog-15830845.post-33294017865621933102017-01-06T14:31:00.001-05:002017-01-06T14:31:34.579-05:00Post-Holiday MalaiseWe all suffer from some kind of letdown after the holiday fanfare that seems to go on forever. I'm not different. I'm spending the weeks after the holidays preparing for the last ever Gonzo's Nose show, and I'm nostalgic but so far dry eyed.<br />
<br />
Then...<br />
<br />
Then...this came into my inbox:<br />
<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHHzkDekW2yC-K9ktzmtNeHkAS5dlUwEphLRxlqHxNrh5EpXeT0Q1sUssAxX1-DnDWmxQw2Av1eNu0zuXa3BTgiemEjqRiWMllg6bQwDbzqwXWMWGRtvkYfts4DBjj63nWJU3UiA/s1600/IMG_4310.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHHzkDekW2yC-K9ktzmtNeHkAS5dlUwEphLRxlqHxNrh5EpXeT0Q1sUssAxX1-DnDWmxQw2Av1eNu0zuXa3BTgiemEjqRiWMllg6bQwDbzqwXWMWGRtvkYfts4DBjj63nWJU3UiA/s320/IMG_4310.JPG" width="320" /></a></div>
<br />
Jean sent it to me, as we are all unearthing photos related to the band getting ready for the show. She said the caption in her photo album says "Connor's first Gonzo's Nose gig, 6/23/04"<br />
<br />
Oh, man.<br />
<br />
January makes us tentative now. We're never sure where our heads will be, if it will be extra hard between 2/1 and 2/9 or just normal hard.<br />
<br />
This photo makes me cry and makes me so happy. I'm wearing a shirt my dad gave me that I think is still in my closet, and a smile that makes it all the way to my eyes. It's two months after Connor's diagnosis here, and he's out, and looks so healthy (thanks, steroids!) and he's LOOKING AT ME while I'm feeding him.<br />
<br />
It's so real, and so normal, and I look happy. Because I was happy. Even though he'd just been told that he had no chance, and that we as parents had pretty much no course but to accept it, we look happy, and healthy, and normal. And Jean caught this because she always, always took photos at shows, and it wasn't restricted to the performers. She documented all of us, as we grew and changed. I was the first band person to become a parent. It's enthralling to see that despite all of what happened with Connor, I still was happy. Happy to be out, happy to share something so important to me with him even though he didn't understand it, happy to have those friends I accidentally came upon by calling a number in the back of a City Paper ad who are now my cornerstone friends.<br />
<br />
This picture is going up at home, with his candleholder for the anniversary of his death and then soon after his birthday celebration.<br />
<br />
Thanks, Jean, for sending me this important reminder. Also, for his insanely adorable feet in this photo; I want to nibble those toes. Baby feet are the greatest gift. chunkinsbloghttp://www.blogger.com/profile/03437469379640787120noreply@blogger.com2tag:blogger.com,1999:blog-15830845.post-49168302429061261522016-12-19T10:00:00.000-05:002016-12-19T10:00:10.199-05:00Loads of QuietIt's been hard to know what to write in the last several weeks. I live in an area where most of the adults (and children) were supporting Hillary Clinton, and we all spent more time than I think any of us individually expected recovering from her stunning non-victorious winning of the popular vote in the election. There are so many ways that people are saying that we can get involved, but after all the fake news, it's hard to know what's a real opportunity, and what may be distracting propaganda.<br />
<br />
And it's all propaganda, isn't it? The PEOTUS is making "decisions" that seem arbitrary and certainly not in the best interest of the country, so to distract the electorate from that, he's tweeting wildly about SNL, China, Russian hacking, that's he's smart enough not to need daily intelligence briefings, Vanity Fair magazine, Chuck Jones, etc. Then , the media veers off the report on those distractions, and he nominates oil barons who have been awarded the highest non-citizen honor from RUSSIA to be our SoS. What? WHAT?<br />
<br />
<span style="font-size: x-large;">WHAT?????????????<br /></span><br />
I just...I just can't. Meanwhile, we hurtled through the first Thanksgiving as a country as divided as 1860, and now on to the holidays of Hanukkah and Christmas. and we're still pretty tentative. I worry about violence popping the bubble around my home, even though it seems hilariously far-fetched. You know what else sounded far-fetched? Donald Trump winning the Republican nomination for the presidency. Also, Donald Trump winning the election. And yet, hilariously, both those things came to pass regardless of how hard he seemed to be trying to NOT be president.<br />
<br />
So what now? When I was a child, we watched the news nightly as a family. I am not sure I want my kids to watch the news because what if it isn't actually the news? How will they grow up learning to be citizens of the United States, and of the world, if I can't show them reliable information about the state of the country and the world? They are already children of the internet - how can I show them that most of what they find on the internet is wildly inaccurate?<br />
<br />
And how can I do all these things, on top of the already Denali-esque pile of things-to-do I have daily anyway?<br />
<br />
So, while these rocks tumble around in my head, I've been quiet. Because I'm pretty sure we ALL wonder how to parent and live and survive this spectacular showcase. It is, in fact, tremendous. Never once in my life did I think I would live in a time of such division and anger. It forces me to consider - will we ever be post-racism? Post-afraid-of-people-not-like-us? Post-anything? Or ultimately, are we all more closed off than we ever considered, and at the end of each day it's are MY people safe?<br />
<br />
I dunno. It's a lot to consider. For now, mostly, I just try to be nice to everybody. Except at the people who drive poorly. Them I yell at.<br />
<br />
<br />chunkinsbloghttp://www.blogger.com/profile/03437469379640787120noreply@blogger.com0tag:blogger.com,1999:blog-15830845.post-6084927077419475072016-11-09T11:57:00.003-05:002016-11-09T11:57:42.741-05:00It's Mourning In AmericaThis morning I woke up with the same feeling in my body and my soul that was present on February 2, 2014.<br />
<br />
How can this be reality?<br />
<br />
But it is. And I despise that there is a trap door here. I was truly not expecting this one. I thought it would be close. I know how much people hate Hillary. It's clearly beyond reason. But I was not expecting this trap door.<br />
<br />
And when I got home from an appointment this morning, I found this rebellious bloom in Connor's garden. A November blossom.<br />
<br />
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<br />
Keep the faith, friends. Connor came back to visit me today and helped dispel that feeling I woke up with. I'm giving myself today to recoup my strength. As you know, I have practice at that, so now that I've done it, it will be faster this time. It will bolster my desire to do good. To be good. To practice compassion. To remove complacency. To remember what this country is about, what I am about, and what power lies in me.<br />
<br />chunkinsbloghttp://www.blogger.com/profile/03437469379640787120noreply@blogger.com0tag:blogger.com,1999:blog-15830845.post-9492100700151080782016-11-07T09:54:00.001-05:002016-11-07T09:54:50.718-05:00Being the Best I Can BeI am so lucky.<br />
<br />
I was raised in a family where the gender dynamic was not even close to even. We weren't just female-heavy in our ratio. Females are dominant in our family. Not only in my nuclear family, but in my extended family of cousins too. It was a matter of fact that we are strong women. We were raised by strong women.<br />
<br />
I was also raised by a strong man who believes to be very depth of his being that each of us can be anything we want to be. ANYTHING. I cannot think of a single time in my life when my father treated me differently than my brother. Want to play sports? Great, let's get your geared up so you can play your best. Need to practice? Let's hit the driveway. Tough spot in school? Let's sort it out. You have rehearsal? Let's get you there and home again safely. It wasn't only him, but when I think back, as far back as I possibly can remember, I never had my father say "you can't..." to me except in two instances:<br />
<br />
1. When I wanted to wear my Emory University shorts inside out to the state finals in my senior year for basketball. My reason - the shorts were the only red shorts I owned but I was there supporting my team, not Emory. His reason - just no. Turn em back out. I glowered, I muttered under my breath (hm, wonder where THAT trait comes from) but I did it because I tested him completely throughout my adolescence and that was the first NO he gave me.<br />
<br />
2. In my third year of college, when I became enamored of clowning (yes, clowning) and decided that once I completed my degree I would join the circus as a clown for a year. That got a big fat nope from him too.<br />
<br />
I am so lucky.<br />
<br />
I was so outspoken, sassy, strong, pick-your-synonym if you don't like mine when I was in high school that it inspired fear in boys. I attended an all girls high school, but the first day I had to go to the boys high school, 4 times the size of my own, I walked down the center of the hall there, between rows upon rows of lockers and hundreds of boys, with my head up, my eyes open and ready for a challenge. Many, many times I was challenged there. Every time, I refused to back down. Even to the point of being escorted to their office for a conversation with their Dean of Students whose responsibilities included handling the problems students. I wasn't even one of his students.<br />
<br />
Because of how I was raised, it never occurred to me that I needed to be quiet, or unassuming, or demure. Naw, screw that? I was female, I was human, and I would not be denied my rights as a human. Before anyone ever made the astonishingly simple relation that human rights apply to all humans, I believed that and tried to live it. And I was never punished for living that way, not even by the Dean of Students of the boys' school.<br />
<br />
I am so lucky.<br />
<br />
I went to college without a single concern about being safe. I have always been safe, even when I made stupid choices of epic proportions. I'm certain I made them. I probably have friends who can verify them! But I stomped out of college unscathed, and I know so many women who did not. I wish I had done more for them.<br />
<br />
I am so lucky.<br />
<br />
I worked at a wonderful place for a decade. While there, I was promoted to an executive position in my office, and a male partner asked me after the announcement if it made sense that I was an executive since I wasn't even 30. My response, carefully stated since I'd learned to be wiser with words as I matured, was to say, "Why not? No one else was clamoring for this."<br />
<br />
It never came up again, and he was one of my greatest champions while I worked there.<br />
<br />
I am so lucky. And it's time for me to start pushing that luck out of me and into those who will come. My sons, who have privileges so deep they cannot even begin to fathom them, and whose interest in social justice inspires me. My community, which has much of what it needs but can always make room for improvement. My country, which has suffered terribly in the last 15 months in an ugly electoral cycle that is certainly not the first of it's kind, but without question the most televised one. I may write Ryan Murphy and tell him that next year he needs to do American Horror Story: Election.<br />
<br />
But I am so lucky. And tomorrow, I vote.<br />
<br />chunkinsbloghttp://www.blogger.com/profile/03437469379640787120noreply@blogger.com0