If you're interested in hearing even more about my book than I am already subjecting you to here, go check out the page of video conversations with Julie and me at the book site. There are like a dozen of them, believe it or not. Clearly, I was looking for a distraction this weekend.
I have to warn you, however, that if you want to see them, you had probably better do it quickly. I'm unsure whether or not I am going to keep them up. I think the idea is sound, and I know everyone always likes to hear more from Julie.
But there are two things that keep me from making any long-term plans for these clips staying online:
1) Thanks to our crapass video camera, the actual picture quality if pretty bad, almost embarrassingly so, and...
2) I stutter like a moron.
I've got an email out to my editor asking for her opinion. If she thinks the concept works, perhaps I will get hold of an actual, twenty-first century video camera and shoot it again.
Not sure what to do about my stammer, however. Medication, perhaps.
23 comments:
I'm watching these right now and I think they are heartbreaking and fascinating and perfect companion to the book. I'm particularly affected by listening to Julie -- the segment in "The Monster" where she says how beautiful a day it was outside, the day of the diagnosis . . . well. Really, really powerful stuff.
I think they are very powerful and very good - but I would understand your decision if you were to take them down. It was really nice to hear more from Julie though! :)
I kept that one ("The Monster") because of Julie's reaction and how honest and emotionally raw it was, but when we went back and watched it again, she pointed out that my part was the same, particularly how I had a hard time saying "retardation" and also how some kids die from the seizures.
It is the least polished of all the clips, but probably the best because of that.
I'm now worried that having used the term "heartbreaking" makes it sound like I think they are predominantly sad, which I do not. To recap: videos good. You keep.
delurking...
These really resonated with me, particularly the one on language. I've got major congenital foot problems, and there have been some very low points. But you know what? I also own the gimpy label. Because it means that I'm on crutches rather than a wheelchair, and that's hard-earned progress.
The videos are lovely, the 3 or 4 of them I just watched. Very honest, and just the right amount of stuttering to make it feel true.
My only thought, with some of the film you did of yourself, is that you hover too close to the camera. This skews your face and does a little Quasimoto thing with your shoulders. If I didn't know your writing or your story, and saw the film without the sound, you would appear a bit controlling and menacing. Those are the sort of subconscious perceptions that someone who hasn't gotten to "know you" yet might be influenced by.
It might look better if you could get the camera a little lower and sit back and square to the lens so your shoulders are more level. I don't think you'd need to change every clip like that, just change out some of them, or add in some new footage so that it is balanced.
[Also, Did you need us to give you some crap about bad video quality in order to have an excuse to go buy a new camera/toy? Because, wow, what you could do with a really nice video camera... ]
[Also, part 2: If Julie has some magic secret that gives her that gorgeous skin, I will buy you that new camera in trade.]
Yeah, I do look a little weird. I was trying to deal with the fact that the microphone on this camera is awful and only picks up clear sound when you are fairly close. (Julie's audio is boosted like 50% just to make her audible, and because of that, you all get to enjoy our delightful and refreshing air conditioning in the background.)
I looked into video camera rental. That was eye-opening. Clearly I'm in the wrong business...
Donna said: I hope that everyone in the world buys your book. Then I hope it is made into a movie. And you make millions. And help all those other kids with the same condition.
And that you never HAVE to work again. And that you never ever have to worry that there will be no one there for Schuyler when she grows up.
You guys are something.
Man, these are so great, I'm only half-way through them and I have been getting misty at each and every one. I guess they make me emotional because I can relate to so much, in fact everything you and Julie have said so far has been my reality in the past 23 months. Different monster, same unknown future and reality.
I'm with you on the language issue. These terms are totally for the rest of the world to make them feel better about some very tough stuff. I think that we should be using the words that aptly reflect the subject, forget the sugar coating.
I know for a fact that all of us envy the fact that you can know Schuyler, and we can only see glimpses of her. She's amazing.
Okay, I just watched most of the rest of them.
"I'm not sure if I believe in God, but... I believe in Schuyler."
Never doubt that you are an amazing father.
Wow.
I can't watch until work tomorrow. Please keep them up til then!
I did watch them. They are good enough to get your point across without great video production but you could use a camera I'm sure!
I envy you because you write (and make videos) so well. I don't envy you having Schuyler, but I have enjoyed knowing you both through this online thing. And Julie, too. When I met Julie in person, weirdly enough, she felt like the one of the three of you that I could get to know best if we really did know each other in person and not in this slightly creepy bloggy style.
Great videos! The intro sequence with the book title is awesome.
Re #1: Though a book has more of a professional image than a blog, it would be difficult to recreate the unscripted naturalness of your emotions. Re #2: I didn't notice any stuttering. I think you did fine!
My favorite clips were “On Language” and “The Author on God.” I'm guilty of dancing around the language. Recently, I saw an objection to the term “special needs” because it implies that the child takes rather than gives. I understand the use of positive language but I think ever-changing, vague terms are confusing and intimidating (I always worry about being PC).
The only one I didn’t like was “Schuyler’s Future.” To me it didn’t say a lot. After reading your blog and watching the videos, I see so much positive and inspirational about Schuyler that I wonder why she wouldn’t be able to live on her own?
The only thing I can see that’s missing that would be a huge draw for the book would be a short clip of Schuyler herself (similar to the audio you posted earlier.) Not to exploit her in any way – just to give the readers someone to connect with.
PS> how do you do the photos where they are mostly black and white except for the skin tones/pinks/reds? I love those!
These are incredible. I hope you do keep them up. The stammering just shows that you're thinking about your words spontaneously... not scripted. Don't worry another second about it, everyone does it and it's not distracting.
Really powerful stuff. And Julie is an amazing soul. If you can convince her to go on the talk show circuit, you'll sell a jillion copies.
My son Daniel who is 2 yrs old, also has the same monster that your daughter does. I cannot wait to read your book. I watched the videos and they are indeed heartbreaking. I sit here sobbing (I am sure not your intent) but listening to Julie explain the day you learned of Schuylers diagnosis, I can so relate. I relive that day over and over again. You question as a mother what you did wrong during the pregnancy to cause this, or you ask God...what you are beign "punsihed" for, what you did wrong. But after the shock wears off a little bit, you realize that you aren't beign punished for anything. I am so blessed to have Daniel in my life. He is the youngest child of 5 (4 "normal" children and 1 "broken") and I can tell you I have grown more as a person with my little guy. You stated that you hope people envy you and not pity you, and I do envy all of you so much, I check the blog often adn hope that Daniel will eventually be able to do some of the things Schuyler does. I'll tell you when I first found the blog I hate it, because I hated that your daughter who has the exact same thing as my son does, was so different. It wasn't fair. I had alot of "why" and "how comes" to many doctors to try to get an explanation of why there was such a difference. Anyways I am babbling, and I will stop but I just wanted to thank you, and your family for putting yourselves out there for other parents like me. With all my being...thank you.
melanie, mom to Daniel
www.danielspranger.com
Wow, I love these. As I've said before, I love any glimpse into Julie that you give, because I find her fascinating. She seems like such a cool person, and, as someone above said, what amazing skin she has! If it shows on your little home video, I wonder how brilliant it looks in real life.
And as far as spirituality goes, that's one of my favorite things about reading. Your spirit, Schuyler's spirit, even Julie's spirit, show through in everything you write. Invisible guy in the sky not required.
And oh, how I would love to read Julie's story! Please tell her how much we appreciate what she does share with us here. It's obvious that she is an extraordinary mom, and you an extraordinary dad.
How often do people tell you you look like siblings? Cuz you totally do :)
Wow. Those videos are amazing, Rob. If there were "imperfections" of speech or technology, I sure as heck didn't notice them. I was simply taken in by the story that you and Julie were telling and by the love, affection and sometimes helplessness in your voices.
Great work.
The videos are great. When you and Julie are speaking unscripted, it makes this all so much more real to those of us who have never met you. You're not just words on the computer screen.
Our family has also experienced scary medical tests (the tests weren't scary, but what they were looking for was) and a frightening diagnosis with subsequent surgeries and complications. What I found so amazing was that Julie noticed the weather, as I did. I couldn't believe there were beautiful sunny summer days and everyone else was going about their normal daily lives, while we faced a fatal disease. When it feels like your world is ending, somehow it seems like the rest of the world should follow suit.
Anyway, I loved all the videos and for some reason, I couldn't get over that you don't have a British accent. I mean, I knew you wouldn't, but I guess your resemblence of Elton John is screwed quite deeply into my subconscious!
from Kristen
Rob - this is so great. Don't be so hard on yourself. You do an incredibly eloquent job of sharing your life. You and Julie are so inspiring. It is such comfort to hear from someone who can relate to parenting a broken child. Thank you for letting us in so close to your wonderful family. I can't wait to read your book.
Leave them up! They're raw and gentle at the same time.
hey I thought those were pretty cool..
Ok, I am aware this will sound internet creepyish and for that you don't even need to publish this post..
but it's really weird. the most recent pic you posted of Schuler, she just looks like my son's clone. except in girl form, and older. and then i looked at your picture, and OK WEIRD, you look like my Dad, alot . i never noticed it before.. you don't happen to be of Scotish Irish heritage ? or happen to be of the McDonald or O'Heeron family ? or related to Gene Tierney the actress from the 50's
Ok. end quote for the internet creepiness. sorry. it's really true though, there is a resemblence, and i promise im not a creep. lol.
Our son had an extremely rare (at the time, not so much now) blood disease when he was little. He was diagnosed when he was 6, and I taught him how to say the name of his monster so that he could aid any grown ups who didn't know how to help him when or if his monster got cranky. He was in and out of isolation units at the hospital for over 6 years. During those stays, and his throughout his illness and treatments, we chronicled many things with photos. I was critisized by well meaning folk who wanted to act as if this part of his life did not exist. But it was a HUGE part of his life.
I have spent the better part of my morning watching your videos, reading everything on the press page, etc.
Although their monsters are different they are monsters still the same. When I see Schuyler in her helmet and sword it reminds me of a little 7 year old boy who was told to close his eyes and imagine slaying the monster that was eating his blood. When I see the two of you and hear your heartfelt words, paused and emotion filled, it reminds me of those struggling days. I love that you are honest with yourselves, but also with Schuyler.
Please keep the videos up and available.
My son's monster took a vacation for a few years and then came back with luggage and heavy furniture, moved in and is now redecorating. That said, my son is a strapping fire fighter who continues to close his eyes and fight the monster who has come to eat his blood.
I worried as Julie did that he would never grow up, live alone or be happy and confident. He has. And I am sure that Schuyler will also.
And to add to the "o.k., that was weird..." comments...
As I have read this blog for some time now I always thought Rob looked like a dark, more masculine version of ELton John, and frankly wondered where Schuyler got her "here, buy whatever I am selling" danged good looks. Mystery solved by finally seeing mom. No offence to either Ej or Rob, but I am glad she got her mommy's looks. lol ; )
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