Sunday, August 5, 2012

Coming Out Autistic

So I am at BlogHer. And it is crazy and wonderful and overwhelming and fun and some of my favorite people are here and I have a lot to say about it and photos to post, but I have something rumbling around that I have to get out.

I've been thinking a lot about my own autism at this conference. Partly because of my social and sensory issues, but also because autism is so central to what I write about.

When people meet you at BlogHer, they ask what you write about. I usually say, "I write a humor blog about autism and rodents," partly because it's true and partly because it's funny to see people try to digest that information. I usually follow up with, "I have a son with autism."

This year, however, when I've said that, it has felt less honest. This is because although I still identify most strongly as an autism parent, the truth is that I have Asperger's and that is an important part of me. As I understand this new lens more and adjust to this new part of my identity, that identification will probably become more important to me.

Not mentioning it when it is pertinent seems dishonest and as if I am hiding a part of myself. Which I don't want to do, both for me and as an example for Jack. I always say that my goal for Jack is to raise a proud, happy, autistic man and he can decide on the rest.

But I can't expect him to be proud and open and full of love for every part of himself if I can't lead by example and do the same. And part of that is being out.

I am out as having Asperger's. I have disclosed that information here. But there is a big difference between writing about being autistic online and actually saying the words out loud to people in real life and accepting the judgments, stigma, and assumptions that might follow.

And, yes, a lot of the people who live in my computer also exist in my day-to-day real life world, but other than four or five people that I am closest to, I hadn't yet said to someone's face, "I am autistic."

Yesterday I went to a BlogHer panel by Deb on the Rocks, Mocha Momma, and Faiqa who talked about the intersection of identity and issues in blogging, in their cases, largely gay, race, political, and Muslim issues. As they spoke of closets and responsibility and power, I thought about the way I feel about the autistic rights movement and how I see it as a civil rights issue and it all felt so parallel to what they were saying.

Then Deb said something along the lines of (and dear lord, I hope I'm not misrepresenting her), if there is an impulse to be closeted, we need to examine why that impulse is there.

Right?

I understand why some people would choose to not disclose their autism, but I think that if I can be out about it, if I can disclose it, don't I have a responsibility to do so? On a micro scale for Jack and for me; on a macro scale, for all autistic people that fear identification?

I'm still figuring all this out. This is why I wrote about my diagnosis and haven't touched it since. It's a big identity change/addition/modification/retooling. Please bear with me over the coming months.

What I'm trying to say is that I feel as if not saying, "My son and I have autism," when I am explaining why I write about autism feels disingenuous. Yes, I still own my status as an autism mom and I own it fucking proudly, but now there is more to it.

So this weekend, I started to tell people in person. I started to come out of the neurotypical closet (Or is it an autistic closet? I told you that I'm new at this.) And you know what? It didn't hurt at all. Some people made the small talky comments that means they don't much care, some people glossed over it, some people wanted to know more, and at least one person told me she is an Aspie too. Also, when I kinda freaked out over this sample of the core of a gel mattress, the lady at that Expo booth kind of gave me a weird look and then walked away from me.

(Also, one person congratulated me, which is, without a doubt, my favorite response to my diagnosis and has come almost solely from autistic people.)

It feels strange on my tongue to say it, but it will become more natural. And I know that all the feedback I get won't be good, but at least it will be honest on my part.

So. If you see me walking around the world?


This is me. I write a humor blog about autism and rodents because I like to laugh, my son and I are autistic, and rodents are goddamn funny.

109 comments:

  1. Love this and so happy for you to feel comfortable opening up and talking about it. I'm still trying to get there regarding my situation and don't know quite how to do it yet.

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  2. I think that is wonderful, insightful and brave! Even though there is nothing wrong with being autistic (in fact it is in many ways a wonderful thing), I also know it is scarry to admit you are different from a lot of the people you are introducing yourself to. You are a wonderful example for your son. If anyone comments negatively it is out of ignorance, and their loss. Good for you! :)

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  3. I adore you and think you are lovely and wonderful and funny and beautiful. And spending time with you was a highlight of the conference for me. Autism is part of you, yes. But is not all of you, and I think you articulated that so wonderfully in this piece.

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  4. Way to go Stimey!! Live life on YOUR terms and no one elses! Thanks for sharing!

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  5. I always knew you were special! Love you, Stimey! Have a great time at BlogHer. Just give those damn gel mattress cores a wide berth!

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  6. Just when I thought I couldn't love you more...
    Can I say one of my favorite moments of the conference came when sitting outside of Friday night's party with you. The thumping beat, the noise, the crowd...and when you said "I'm autistic! I can't go in there!" My own sensory issues kept me from being anywhere in there.
    I have never been more happy or more proud to be your friend.

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  7. Shall I take a picture of my sensory overloaded, bitten to the nubs, fingernails? xoxox

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  8. You are the most awesome and courageous person I have ever met.

    Thank you.

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  9. Hmmm. I don't think I responded one way or another. I liked you pre-diagnosis and I like you post. As identity it is important. As part of you, my friend, it is simply something interesting an another part of you that I love. I hope ou knew that already!

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  10. I love you. And? Congratulations!

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  11. Don't be too hard on yourself. Your diagnosis is new and you are not used to saying it yet. Change takes time. You'll get there!

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  12. Stimey---this has been on the back burner with me as well.  There is so much within the Autism community--between NT parents, adults with Autism and adults with Autism who have children with Autism.  I've wrestled with it as my son is exactly like me---down to both of us leaving a store yesterday because it was too loud.  We just looked at each other, smiled and we turned around and out.  The thing is?  I've been like you--not wanting to disclose.   I've been hiding my secret of being on the Spectrum.   I've wanted to post over at my place about it but haven't been able to figure it out so I've just left it as is.   I have told one person and she said, "that's awesome!"   and it gave me a big smile so I tell you what I was told, "Stimey, that's awesome!!!" 

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  13. Stimey, you are so fantastic!  This post brought tears to my eyes for so many reasons, but all good ones.  I love how you want your son to grow up proud of who he is.  I want the same thing.  And though I don't think I am on the spectrum, I do worry that many of my insecurities and hang-ups about fitting in, "being normal" etc. are getting in the way of that.  I'm working on it.  Hard.  Because I'll be damned if my son isn't the coolest person I know.  And I want him to feel good about himself in a way I have never felt about myself.

    I don't know if this makes any sense, but your post (and your blog in general) reminds me to work through my own hang ups so I can be the most authentic and honest person, so my kids can grow up proud of who they are.  I'm not being very articulate here, but just thank you for sharing your experiences so openly and honestly.  I am so grateful!

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  14. This is wonderful, and you expressed it beautifully.

    I have a couple invisible disabilities that have been bigger problems in certain settings and certain points of my life. My sister shares one of them but to a lesser extent, and we have always had very different views on disclosure. I've always seen disclosure as a chance to educate and raise awareness, and I feel that even more so now that I have a child with disabilities. How can she be proud of who she is if I'm hiding who I am?

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  15. Autism can be pretty damn funny, too. 

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  16. Such an honest and well-written post! Love it! :D

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  17. Your honesty and integrity are totally inspiring. And I SO wish I could write half as well as you do.

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  18. Welcome to the world of being out Autistic. 

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  19. I love the "My son and I..." part, because not only does it let you come out, but it also binds you to your son: you and he, in it together.

    I do think you wouldn't have to feel obligated to tell all the time, though. I mean, if you'd want them to know but you don't want to tell because you feel ashamed, that would probably be being closeted. But if you're not telling someone because it's not the right moment in the relationship, that seems like normal privacy---the way the deli clerk doesn't have to tell each customer that she's gay, or a parent I chat with at the park doesn't have to lead with the information that her children are adopted.

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  20. Is it weird that I'm crying tears of --what? Joy? Pride? I don't know. I just know I love you exactly as you are no matter name you give it. xoxo

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  21. Just wanted to pop over and give you a thumbs up.  I think the idea that we have to examine the instinct to hide ourselves is right on - and I also think it is important to look at why we want to disclose when we do so.  I think you handled it perfectly!

    I have told a few people at work but have not announced it to the new employees that I train, and I have been thinking lately that it would be a good idea to tell them from the beginning so my way of interacting never becomes a barrier to their success in the job.

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  22. This is the first time I've visited; I will certainly be back. I have a question for you (which you may have answered somewhere else on your blog); as an adult with social and sensory issues, is it worth being investigated for autism myself, if I've managed to cope this far in my life? (35 years). Currently browsing via mobile, looking forward to reading more.

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  23. I am so happy I met you but I am not happy we did not spend more time together. I think you are awesome and so proud that you came out of the autistic closet!  Let's have a coming out party!!  

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  24. CONGRATULATIONS!! (Yes, I may be yelling. It's not my fault - I've had two glasses of wine because my bunch is down with the Coxsackie virus and all out of sorts. I digress...) I love reading your blog. Thanks for your honesty. Jack has an amazing example to look to. Own your Aspie. Your family will thrive because of it. Don't stop blogging. You truly do have a gift when it comes to writing a humor gift about autism and rodents.

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  25. I meant "a humor blog about..." More wine, please!

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  26. You're a phenomenal human being and I love you and am so glad we're friends.

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  27. you're the best. so happy i got to see you TWO weekends in a row!

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  28. Dinner and just hanging out with you was one of the highlights of the conference for me - I felt like I was instantly among friends in the chaos and uncertainty of the whole thing. This is an honest and incredible post, just like you. Thanks for opening up and allowing me get to know you better, because the more I learn about you, the more I get to see how amazing you are. xo

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  29. Love it, Stimey. And also? That lady with the mattress people obviously needs some more exposure to us in the special needs community. There's apparently a lot she needs to learn about socialization.

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  30. no wonder i like you and your son so much! it was great to see you! xo

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  31. Is it possible to love you even more than I do? Yes, I believe it is. Love this post. Love you. You rock, my friend. 

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  32. I'm not reading the comments above, so apologize if I'm duplicating - but I have this small part of me that says much of you wants to identify as an autism mom because that part of you is so important, and your autism may feel less important to you. I don't consider it a denial or withhoding information, I consider it prioritizing what you want people to know. I'm not saying that one or the other IS ACTUALLY MORE IMPORTANT, just that maybe you feel one is so important that you're reluctant to say too much that might possibly de-emphasize the mom of a child with autism identity. You rock. Congrats on getting through BlogHer.

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  33. Standing ovation.

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  34. Damn it. Now I want to be autistic, too. Love you, friend.

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  35. YAY! So happy for you :)

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  36. Can I throw you a shower??? I'm not kidding.

    I adore you. 

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  37. I really enjoyed meeting you and getting to know you on Thursday.  Next time you are in New York, I'd love to show you the real Empire State Building. :-)  

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  38. I love you, you are awesome!  

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  39.  When you're ready, you'll know. Let me know if you ever want to talk. Love you.

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  40.  The feeling is mutual. You are one of my favorites. #ourtimeisnow!

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  41.  Trust me, I'm not going anywhere near them again. :) Love you, friend.

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  42.  Alysia, you are a big part of my courage. And you were a HUGE part of my BlogHer. Thank you for being you and for giving me all that you do. I am honored to be your friend.

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  43.  You know I feel the same, my love.

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  44.  You know what I'm going to say back to you? Lizbeth, that's awesome. You know I adore you.

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  45.  Thank you, Patty. So much. And I think you articulated this really well. I know just what you mean about what you want for your son.

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  46.  It is definitely something worth looking at. There are so many ways to define yourself and every person wants to put forth a certain part of themselves. I think that's okay, but I think we have to make sure that no one de-emphasizes or closets a part of them because of stigma, opression, and discrimination. If those of us that can educate and raise awareness and advocate do, then maybe the others can follow.

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  47.  I agree completely, and I definitely see those same parallels that you do. Although I always like my deli clerks to let me know their sexuality, you know, so I can remember to wear rainbows.

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  48.  I think it is a good question about when and to whom it is appropriate to disclose. It's definitely something I have to give more thought to.

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  49.  Can we have the party in a hallway? :) Thank you. And it was wonderful to meet you too!

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  50.  Thank you so much! And I hope everyone gets better soon! Enjoy the wine!

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  51.  I could say the exact same thing to you.

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  52.  I know! What are we doing next weekend?

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  53.  It was great to see you too. I hope you had a good conference, my brave friend.

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  54.  I totally get this. And, yes, so much of me is focused on getting Jack to where I am and hopefully surpassing me. Right now, he and my other two kiddos are more important than me. Exactly.

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  55.  *favorite comment*

    Love you!

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  56.  You are amazing and wonderful and make me feel so happy. Thank you.

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  57.  Is that the one with the point on top?

    I loved meeting and talking with you too!

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  58. Stimey, it's great that you "came out" and felt comfortable about it. However, I feel that when a person is gay or an aspie or anything else, they have the freedom to just be. I don't think everyone should feel they have to explain to the world who they are. If they want to share, that's okay too. But they shouldn't feel an obligation to. You know what I mean? You're not being less than honest about who you are. I'm glad you had fun! I wish I was there. It would have been nice to have met you.

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  59. Always good to feel as though we can be our authentic selves... Congrats! Here's another mom blogger you and your readers will enjoy: www.mytwicebakedpotato.com

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  60. This was so freaking awesome, Jean.  I say wear it loud and proud and if someone is uncomfortable by it then they can kiss Algernon's ass.  

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  61. What a beautiful post and I am so incredibly proud of you for sharing! Own it woman! I'm so glad I got to spend time with you this weekend and got to steal a photo with Algernon! He's such a rock star! I'm thinking he needs his own Twitter account! LOL!

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  62. I love you, but I want you to come out to me in person so I can tell you what I said to my friend Barry when he told me he was gay and was worried it would negatively effect our friendship,"Oh lord, I'm so relieved! I thought you were going to tell me you were a Republican." But of course, if you have Autism AND you are a Republican, I would still love you. I love all of my friends regardless of their Neurtypicalism or political party.

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  63. Fragile X Syndrome here. (Similar to and often coexists with autism.) Welcome. :)

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  64. Stimey - I have always thought you were awesome - what you write and your parenting experiences.  Since you opened your closet I think you are more awesome-er.....I wish I could have been at the conference just so I could meet you.  

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  65. Very Cool! And yes, rodents are goddamn funny. My son and I are Aspies. I write a blog also. Always happy to find other mom/ son autistic combos! If interested aspergersthealien.blogspot.com
    Great Post!

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  66. You know, when you said you were in that panel and finding it really inspirational, I hadn't made the connection between their discussion points and your diagnosis. It hadn't even crossed my mind. Maybe it's because I know you (and love you) and your diagnosis really has no impact on the way I perceive you; Jean is Jean regardless if she's aspie or neurotypical.

    It's an odd sensation being on the outside of your new phase of life. Pardon my analogy if you think it's completely inappropriate, but it's not like you recently suffered a physical disability and we, as your friends, are trying to adjust to your new life at the same time that you're adjusting. We're not watching you learn how to use a wheelchair and finding out where and how we can help. You haven't changed - you've always been an aspie, so there's no level of discovery for your friends. It's all self-discovery on your part. It's you figuring out what parts of yourself were influenced and molded by autism. As friends, we always took those parts as face value as just the things that made you, you.

    I'll support you in any way I can and cheer for you from the rooftops! But I won't introduce you to people as my friend with autism (unless you want me to, ha).

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  67. I am so fucking proud of you and lucky to call you my friend. Seriously. I have learned so much from you and I can't wait to know more. xoxo

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  68. You are an amazing person and incredible role model. For your kids but also for the rest of us. Awesome, just awesome.

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  69. I'm not on the spectrum, at least not that I know of.  I think I feel a little left out.  On the other hand, what is normal anyhow?  Me?  Hardly!  So I need to figure out where I fit.  We all fit somewhere, right?  Happy you found your spot! ((HUGS))

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  70. I totally understand where you are coming from.  My daughter and I both have a brain injury sustained from a car accident but for many years I only spoke of her injury.  I was afraid to speak about mine because I thought people would think differently of me.  One day I realized that I needed to be honest about my injury if I wanted my daughter to be proud of herself.  Aren't Moms supposed to show by example?

    You are very brave!

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  71.  I agree with you, definitely. But I do feel a responsibility as well. I'm okay with that for sure, but I definitely feel it.

    It would have been great to meet you too! Someday! :)

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  72.  Thank you so much! And Algernon thinks you rock too!

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  73.  I am not a Republican. Although I might be closeted if I were. :)

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  74.  I would love to meet you someday too! Thank you so much!

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  75.  Awesome! I'll check it out!

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  76.  Delora, I think you're so cool. I completely understand what you're saying. I've always been this way, it's just that I have a new way to look at it and a new name for it. Thanks so much for this wonderful comment.

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  77.  Thank you so much, Kristin!

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  78.  We all find our own truth, right? Thank you!!

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  79.  Thank you so much for sharing your story here too. It takes courage to share what we are afraid of. xo

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  80. I love this post so much!  I relatively recently came out of the closet with my anxiety depression and adhd. Now I am in a situation where I am on a job search and I have had several people tell me to take down the posts, to go back into the closet. It is so much a part of me, I'm not sure I could do that. I just have to hope it doesn't impact my ability to find a new job. 

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  81. I suspect I am probably aspie as well and I understand the not wanting to talk about it. But hey! Yay you for coming out! I personally think you're full of awesome. 

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  82. You know I just love you Jean. You are are a beautiful, positive force in the world. I feel very lucky to call you my friend.

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  83. Love this. And of course I adore you.

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  84. Awesome. You. :)

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  85. I've never been to BlogHer but if I do go, I definitely want to hang out with you the most :) This really resonates with me on many levels and I hope you know that I think you're totally awesome!!

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