SMS Stories- "Trick or Treat"

I wanted to give you all the chance this week to hear from some voices within the SMS community. And so I will be posting stories from parents who chose to share a glimpse of their life with you all. Please embrace them and say hi. I'm serious. Just say hi and a little of your love to know that they are being heard.

This is from Tina, who writes about her life at her blog Tales from the Trenches. I found Tina's blog, from searching SMS on blogger. You know how when you go onto blogger, and you look at my profile, and you click on Smith Magenis Syndrome listed under "Interests", there are only 3 blogs that pop up. That blew me away, out of the millions of blogs. Anyway... take it away Tina and thank you for this.

All the Love in the Universe ~ Me

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“Trick or treat!” The refrain was coming from our seven year old son, Garrett.

“Trick or treat!” It probably would have sounded less grating if it hadn’t been six o’clock in the morning.

“Trick or treat!” And he had been singing it for the past two hours.

“Trick or treat!” Even with two pillows over my head, I could not block out the noise.

My husband, Charlie, sat up in bed. “Is it November yet?” he asked.

“Garrett will just start asking ‘Santa come today?’” I reminded him.

For us, the OCD-like symptoms that come with Smith-Magenis Syndrome are the most challenging. Garrett will fixate on a TV character or event and absolutely obsessive over it until we are ready to take a ball bat to the purple dinosaur or cancel all holidays.

“Mommy?” Garrett must have heard us whispering. The CIA has nothing on his intelligence work.

“He wants you,” Charlie chuckled.

I walked past Garrett’s door. The knob only works from the outside because Garrett likes to leave his room in the middle of the night.

“You awake?” His head popped out of the top panel. He must have emptied out his toy box, flipped it over and stood on it. Charlie did some carpentry work on the door so we could look in without waking Garrett. Not that he is ever (ever!) asleep.
“I’m going to make some Mommy juice. I’ll be right back,” I answered.

“Mommy juice” was a phrase Garrett invented when he was three. Because he had a speech delay, we used sign language to communicate. Since we did not have a sign for coffee, Garrett combined two words he knew to convey the idea of “coffee.” His unique way of looking at the world constantly amazes (and amuses) us.

“Trick or treat?” It is now difficult to remember why we spent so much time in speech therapy.

Downstairs, I turned off the door alarms and motion detectors. We had them installed after one scary night when Garrett walked out of the house at 3am. He was barefoot and there was frost on the ground. Thankfully, our neighbor leaves for work at that ungodly hour and brought him home. Charlie, who has been mobilized twice with the National Guard, believes Garrett has a future career testing military security systems. We can barely stay one step ahead of him.

All through breakfast, Garrett kept asking, “Trick or treat?” He dined on PB and J, a banana, some go-gurt and milk. It would be the same meal at lunch and again at dinner. Every day, day after day.

“Garrett, we will go trick or treating after dinner,” our son Patrick explained. Although he is the middle child, Patrick fills the role of big brother at our house.

SMS can be an emotional rollercoaster. It is amazing to rejoice in Garrett’s accomplishments and start to believe his delays “are not that bad.” Then reality will rear its ugly head, like when our youngest son Brennan, surpassed Garrett’s abilities. It takes a conscious decision not to dwell on the negative.

After breakfast, Charlie announced he was going to mow the grass.

“Do you have to do that today?” I asked. Garrett cannot stand the sound of the mower.

“What do you want me to do?” he answered. “This is my only day off and I need to mow one last time before winter.”

That is a constant battle for us. I prefer peace and the path of least resistance. Charlie’s philosophy is that the world is not going to adapt for Garrett, so Garrett needs to learn to live in the world. But, an event like beggar’s night can throw Garrett into a meltdown. I felt the need to keep him calm. If Garrett were to reach “the point of no return” in his behaviors, then one of us would have to stay home.

“Garrett we forgot to mark the calendar,” Patrick reminded him. Always the peacemaker, Patrick brought Garrett a marker. We were checking off the days before Halloween in the hopes that it would help Garrett’s concept of time. When he was younger, we would simply not tell Garrett that an event was coming until it was time to start. But once he began attending school, it was impossible to keep news from him.

Garrett turned and saw the pumpkin sticker on today’s date. “Trick or treat! “ He jumped and clapped. Patrick and Brennan joined in. “Trick or treat! Trick or treat!” The boys were laughing and Garrett was grinning from ear to ear.

Then, the mower started.

Garrett fell to the floor. He covered both ears with his hands. He flailed back and forth.

And, then, he started the ear piercing screams. There would be no reasoning with him.

“Can we watch TV?” Brennan shouted above the screams.

“Only if you turn on the Disney channel,” I shouted back to him. I stepped over Garrett and went to load the dishwasher. If we ignored Garrett, he would most likely calm down. Easy enough to do at home, absolutely impossible in public.

Somehow, Garrett heard the Handy Mandy theme song. He went and joined his brothers in the living room as if nothing had happened.

It seemed like a good time for me to get dressed.

When I returned to the kitchen, Garrett sat at the table. He was wearing a chef hat and apron... and he was completely covered in flour. Every measuring cup I owned was lined up on the table and full of flour. He had my largest mixing bowl in front of him. It was filled with twelve eggs. There was not a single shell in the bowl.

I had forgotten to put the lock on the refrigerator door.

“I sorry. I sorry.” Garrett looked at me. “You mad?”

“Get in your room,” I said calmly. “I’ll be up to give you a shower.”

“Trick or treat?” he asked.

“Upstairs!” I shouted.

He covered his ears and ran upstairs.

I was cleaning up the mess when Charlie came in. “Maybe he wanted to be Casper,” he joked. I was not amused.

As I headed upstairs, the smell of chamomile became overpowering. I opened Garrett’s door and saw empty bottles of shampoo, bubble bath and shower gel piled up on his floor. They were poured out into the empty toy box. Garrett sat in the box, completely naked.

“All clean,” he announced through his powdered face.

I had forgotten to put the lock on the upstairs bathroom.

“Trick or treat?” he asked.

We spent the rest of the day answering that question. Charlie decided to set the oven timer. He told Garrett that when he heard the “beep, beep”, it would be time to get his costume. It seemed to do the trick.
Finally, the alarm sounded.

“Garrett!” I ran to the living room. “It’s time to get dressed! Trick or treat!”

Garrett looked at me. He shook his head and turned back to the television. “No thank you. Maybe tomorrow.”

Charlie took the boys trick or treating. Garrett and I stayed home and passed out candy.
And started the countdown to Christmas…

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Look At What We Went & Did

First. Let's all close our eyes, take a deep breath. Let it out. Relax your shoulders. Yesterday was a big day. A huge day. I wanted to show all of you the results of your powerful voice.

That's right everyone. Last night on the first day of its release "Do Fun Stuff- Vol. 1" charted on iTunes. Not just charted but landed firmly at #1 in the Children's Music genre. Can you believe it? I had been dreaming about that as a goal. I mean, you have no idea how bad I wanted to beat Kidz Bop out. Ugh! But I never dreamt in any of my over produced daydreams that we would do it on the first damn day of the release. Let alone be in a flip flopping battle for first with Yo Gabba Gabba who just released their Vol. 2 Music is Awesome album. Since writing this post we have traded places a few times with them. Holy cow! What a payoff to a long day of pushing.

Everyone bring it in for a squeeze, get in here, don't be shy. BIIIIIIIIG HUUUUUUUG from all of us here at PTPR. I tried my best to make it around to all the posts going up to say thank you personally. I didn't make it :( I'm sorry. There were too many fires to put out, and emails to write. But I promise I will make it to all of you. Somehow. The collective voice was a gorgeous thing to see all whirling around the web and touching down, and picking up new voices, and new energy, and it was just an emotional wreck of a day for me. So proud of everyone. The posts I did read were beautiful and inspiring and lovely.

I need to focus. Deep Breath again. Center.

Another goal here along with raising ass loads of money, was to raise awareness about SMS right along with it, and in all of the hype of this beautiful album, I set my blog aside this week and am handing it over to some voices from other families living and navigating SMS. I will be posting multiple posts this week from families from all over that have shared their stories with me. To kick things off I wanted to post a message I received from Ann Smith (yes, she is the Smith, in Smith Magenis) and she tirelessly leads the way for SMS understanding and management.

Take it away Ann

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- I love the tunes - listened to all of them! Good luck RYAN!

Smith-Magenis syndrome was not recognized or named until after 1982 when the first two children were identified with deletion 17p11.2.  Nothing was known about what to expect for these children, lacking any previous clinical reports of this deletion.   Clinically, the spectrum of features that define this rare syndrome now referred to as Smith-Magenis syndrome or SMS are well described; however, diagnosis is often delayed to early childhood due to lack of awareness of the syndrome among health practitioners. Today almost 3 decades since the syndrome's initial description, increased clinical awareness and diagnostic advances using newer molecular DNA-based techniques hopefully will lead to earlier and correct diagnosis.

Past research efforts and PRISMS' parent conferences focused on SMS have led to further recognition of potential management and treatment strategies likely to benefit children and their families impacted by SMS.  More research is needed.  Research to understand rare syndromes takes both time and funding, but has the potential to advance scientific understanding not only of a syndrome like SMS, but provide new insight about biologic processes that impact the general population.

The ingenuity and dedication of effort put forth by Ryan Marshall and his talented music colleagues with this first release of kids music, Do Fun Stuff Vol 1, in partnership with PRISMS, has the potential to raise awareness about SMS and opens new avenues for fundraising future research. I hope you will join me in celebrating the cause and enjoy listening to all the songs - fun, humorous and catchy tunes for all ages to enjoy!

Ann C.M. Smith, MA, DSc(hon)
Chair, PRISMS Professional Advisory Board


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I have to say, I was so surprised the access that Ann Smith grants families to her wisdom and experience, and it was such a blast to get to speak to her for so long about LB. She is funny, and charming, and just puts things in such a clear matter of fact way. I am so grateful to her not just for what she does with SMS, but how she treats people. By the time we hung up that first time, she felt like a dear friend.

I will be back to post the first of the stories this afternoon, and I really hope that you accept this diversion from the normal blogging business that goes on around here and support these voices. This is a real glimpse into our life. We all share these experiences. We learn from one another. A tribe in the truest sense, passing down the wisdom and the lessons to the younger kids, in the hopes we can make things better for one another. Soon after the diagnosis we kept hearing people say things like "welcome to the SMS family" and it was off putting at first. I was like, "what the hell are they talking about?" but when I started sharing the ups and downs, and the ride, I started to get it. So yes. Please. These are our stories.

A little house keeping.

1. Sadly I do not know how many albums were sold. iTunes does not release reports to a little blogger with no record label on the first day. I mean, I am sure Arcade Fire knew how they did the first day. But we will have to wait until next week before we know. I wish we could have a little progress meter to really know what we are doing here.I will get my first store report next week. I am assuming things are going well. #1 :)

2. I know some people had problems with the widget and I am sorry. It was the best we could do to support so many platforms and systems, and browsers, and plugins, and it is all too much. I am bummed that some people couldn't get it to go. I appreciate the time you spent trying to make it happen.

3. If you are interested in art for your sidebar, or for a twitter background, please email me with your specs and I will send it ASAP

4. Please, PLEASE, be sure to rate the album and leave a review behind on iTunes. It makes such a difference.

5. AND don't forget if you are a ridiculously wealthy rich person and you want to make a larger donation than just buying the album, you can do so HERE

All the Love in the Universe ~ Me

P.S. If you missed it. Kate Inglis interviewed rickoLus over at her blog. Rick contributed the tracks "Adventure" and "Imagination" if you want to find out more TAKE A LOOK.

Do Fun Stuff :)

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The Send Off & The Beginning

So this is it. It's here. Do Fun Stuff is just sitting on iTunes and ready for you to love. It's been insane to get to today.

When I started writing this blog almost two years ago, one of the very first entries I ever wrote was about feeling awkward about being LB's step-father, and deciding how I should react in public places when anyone would refer to LB as my son. I didn't want to have that knee jerk reaction of immediately distancing myself from him just because he had his Dad in his life, and blurt out: "He's NOT my SON!" that would make LB feel bad, and the person think I was crazy. It took a lot of getting used to. It was always right on the tip of my tongue. If I hadn't fallen in love with The Littlest Buddy, it would not have been fair to marry Cole, but have you seen this kid, how can you not fall in love with LB?! So in the very beginning I was careful to see if there would be a bond between us, and of course there was an immediate bond. But no matter how much I love him, LB is loved by his father, he has someone he calls dad, and so I have always tried to take my place as his best friend. Not in that dangerous way, like when you "best friend" it up with your teens, and let them get drunk and smoke, and you talk about everything with them, I mean like in the way, when your best friend walks up to you and says "That guy over there was a dick to me." and so you walk over and smash the guy in the face for him. That kind of best friend.

If you have been reading here long, you know The Littlest Buddy, and so you also know that along the way, a name was finally attached to all of his developmental delays that he suffers. Cole had always known there was something going on with her baby, and she had him in therapy and speculated about Verbal Apraxia, and anything associated with things like speech delays, and low muscle tone, and cognitive delays. Those first years without a diagnosis-- there was always that attitude that these were just going to be hiccups, and he would just grow out all of this. She kept hold of that Mothers Hope. She taught him signs, she had him involved in therapy at school, and advocated for him in all aspects of his life. In March of 2009 when Cole received a phone call from the developmental pediatrician saying that her son had a rare genetic disorder called Smith Magenis Syndrome, there was fear. When someone tells you something is wrong, but then does not have the capacity or the knowledge to advice or educate or comfort, fear sets in. Realizing this Doctor had no idea what SMS was, Cole hung up, and she jumped online at work and googled SMS, and found PRISMS and she started reading off the symptoms and characteristics, and the big hard thunk to the head that came with the diagnosis, was that this wasn't something that LB will just outgrow. It does not go away.

So here we are. We moved out of the first phase of raging anger and sadness, and we just got busy. We don't have time to screw around being pissed off and sad, The Littlest Buddy has work to do, and so do we. The more we stay ahead of the symptoms and keep the little boy separated from the syndrome as often as possible, the better chance at a more independent life he will have. We focus on the now, the immediate, because as he gets older we see subtle signs of things to come, that before just loomed on that SMS list of characteristics. We have started to see glimpses and flashes of larger issues, so we try and cherish this simpler time, and work hard to try and keep the days ahead easier to manage.

One of the things I wanted to do for LB was try hard to create something that would make ass loads of money. Why? Because ass loads of money used the right way can do great things for people in need. And so I contacted Ann Smith, (who yes, is the "Smith" in "Smith Magenis") Ann has been tirelessly researching and dedicating her life to Smith Magenis Syndrome and making herself available to families for advice, and parenting plans, and brings such intense perspective on things, she's incredible really. I spoke to her about the early days when parents would call her home, and she had a hotline set up out of her house, and would talk parents through the stumbles and hiccups that come with SMS. She has been digging for answers for three decades now. We talked about LB. I told her I wanted to raise money, and that if I did, that I wanted the money to create case studies, and it was her suggestion that we set up a grant fund that would make money available to grad students who choose SMS as their field of choice. It was a great idea. So now I just needed to make that money.

I chose to make a kids record for LB because he loved music so much. For a little boy who does not speak, it is even more rare to hear him sing. It was a rough demo that my best friend growing up had given me for his band Rabbit, I was listening to it in the car, and all of the sudden LB started trying to sing to it. Not like mumble, like he memorized whole sections of the song, and would try harder than I have ever seen him try to sing. He has the cutest voice. That album has not left our CD player, and there was a time, that if we tried to play anything else, he would cry and bite his hand. So that CD has been in our car on repeat now for almost 2 years. Thankfully it was a CD that both Cole and I liked, and it was super kid friendly. Melodic and smart, and just good pop. So the light bulb came on to make a "Kids Record for Parents" something everyone would like. And so I abused all of my friendships with musicians from my past life working with a record label and booking bands at clubs, and I started bugging them like crazy to please write a kids song for LB, and to do it fast.

it took a year to get it all together, and I am sure you are all sick of hearing about it, so I will try and shut my mouth and let you enjoy it.

But before we do. I put together a little farewell video of LB. These are his last days of being five and his little cake party we had for him when he turned 6 on Friday... as I have been threatening when he turns six he is not going to be put in the light on this blog any longer. So this is it for LB here. I can't imagine a better send off than paired with the launch of this album. LB inspired me to put this project together, and now it will be a yearly release. Volume 2 is well under way. LB inspired me every single day to keep working, and made it so that I did not feel stupid when nobody would write back. LB made me not want to give up when I would ask people for help, and they would just ignore me, it isn't their job to care about this, and wave a wand and make it amazing. I would sit there wondering how am I going to make this thing blow up if I don't get help, and I would watch LB being LB, and he can make you smile and melt a heart so quickly, and I would start to get mad. really mad. Angry at myself for not trying harder and so I would just keep writing emails, and bothering people to help. He is an amazing little boy and he has taught me more about love and patience and strength than I could have ever imagined. I knew that the only people that would help... would be the people that have gotten to know him here. And so when I asked you all for help, the response has been tremendous and overwhelming. It's been beautiful and an amazing comfort to know that going into this, we have so much support and people rooting for this cause.

The Littlest Buddy


The song in this video is called "Nothing" it is from the album "Do Fun Stuff" and can be bought on iTunes it was written & performed by Steve Foxbury from the band The Battle Sigh :)

And with that....

Here is DO FUN STUFF

NOW this is what I want you to do.

If you read this blog on any kind of regular basis, or if you just come here for the maternity series, or cute pics of the kids, whatever your reason for coming here is... today, please give this album your attention. And then I want you to purchase it. Go to iTunes and buy this thing. Then I want you to TELL your friends about it. And tell them to tell their friends about it. And I want this to SPREAD. I am the kind of crazy fool that believes that what started out as love for a little boy, can fuel this album into charting, and catching fire, and making some insane amounts of money for this cause.

100% of the proceeds goes to this charity. Every single artist poured their hearts into these songs, and they donated their time and energy to this. Every penny made on the sale goes to this charity. That means research, And with research comes answers, and that means that maybe some of the blanks can start to be filled in on this road map. We are driving to new places without a map. Buy us a freaking map for Gods sake. BUY THIS ALBUM

To everyone that has helped us with this launch, and sent love and encouragement, and that has embraced this family that you just know from a blog-- you are our heroes for this help. We absolutely love you for this. Saying thank you is not enough and if you know me at all you know that I will find a way to say thank you in a larger way. Today is a huge day for this album. Today is our chance to get this thing on fire, and spreading around the internet. I am asking you if you have not already please consider putting this widget in a post and sharing it with readers. Or you can blast the link to www.dofunstuff.net to people over twitter, send out a blast on Face Book. Just please spread the word.

The rest of the week here at Pacing The Panic Room, I am going to open my blog up to some SMS families and let them share their stories with the good people who read here. Please be kind to them and welcome them in. There are also going to be interviews with some of the bands that contributed to this album. The first one I know of will be happening over HERE today. The music turned out so perfect. It was exactly what I had hoped for, and when you are on iTunes today buying your copy, leave behind a review, and give this thing a rating. The more active we are on iTunes the more iTunes will notice the album.

One more time for good measure. Thank you to everyone that kept fueling my fire, and for supporting this idea with your emails, and tweets, and comments, and for putting up with all the noise about it. Of course we could have put this album together, and set up the charity, but it would have no life and energy without all of you believing in it and making this thing come to life today online. You all are making this dream real. We love you so much for this. Thank you.

All the Love in the Universe ~ Us

P.S.

1. Be sure to use the hashtag #dofunstuff on twitter today.

2. If you can't get the widget to work, please just send people on over to www.dofunstuff.net

3. If you wish to make a larger donation to this charity please go HERE to make your contribution.

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She Needs Her Own Space

*UPDATE - I lost my intern to a better/real/legit internship. I didn't even have one for a whole 24 hours. How terrible. I am sure I can still guilt him into building Cole a spot here. He really screwed up. That Christmas bonus was going to be sweet :)


Here are some new phonetographer selections I stole off of Cole's phone.

I decided that Cole needs her own space here. So once the album is charting #1 above KidzBop and Yo Gabba Gabba I am going to have my new intern build her a space for some posts. Whoops did I say intern? Believe me it isn't as luxurious as it could be. I just got lucky because a fellow I know needs some hours to finish up nerd school, and I have a bunch of stuff I need built out for the blog, so it was a perfect pairing. Yes, it's a bonus that we played D&D together and so we already vibe really well as a team. His first order of business, building Cole a little slice of pie right here. Is that cool with everyone else? She would live up there in the top tool bar, and do posts like these, and tell you salon secrets, and well... I don't want to spoil anything. Is there anything you would like her to be blogging about? I knew it was time for her own space when she saw the photos all put together and she was like: "I named all of these. Where are the names? They're important. That top one on the left is called Hydro Monster. How will anyone know it was monster faces from a water spill?"

I don't know darling. But they do now. I love you.

This coming Monday is an epic day. The album officially launches and over the course of the next 24 hours I have to get emails out to over 300 people, and answer any questions or glitches that pop up along the way in preparation for the big web storm. I'm also shooting a wedding video on Sat. So you know what that means. A new love story on the blog very soon. I'm excited for this one. The bride is a Radio City Rockette, so I am assuming there will be a really great dance party at the reception. Fun! It's also LB's birthday today he's SIX and well, we are actually not throwing him a party till September when some friends are visiting. But we had a small cake feast and presents tonight for his big 6th birthday. I need to finish his video on Sunday. Which will go up on Monday and be his last featured hoorah here. And just to quickly address that, yes of course he will pop up in pictures and vids and stuff, it's not like he isn't allowed to be in the x-mas video. He is just done in terms of being front and center in posts and stories and what not.

Enough yapping. have a great weekend everyone, and please be patient with me if you signed up, wrote in, need help, or requested Do Fun Stuff art and ads... I am getting stuff to everyone and fingers crossed this all goes smooth for Monday. I am freaking excited. So excited. Hand shaking excited.

All the Love in the Universe ~ Me

P.S. There has been another fellow that I have drawn a ton of inspiration from during this whole process of getting the SMS charity in place and noticed. I watched him championing his own cause along the way for his daughter, and I have to tell you it isn't an easy thing to do, you're constantly walking that line of talking too much, and turning people away, but at the same time you have to keep constantly asking for help. It takes time for people to hear you. Anyway I admire him for his tenacity, and spirit, and drive and he is on the verge of doing something absolutely amazing. Please at some point today set aside some seconds and go and vote HERE. It takes one minute to sign up, and then you can vote. If he can just hold this #2 spot till Aug 31st his charity will receive $250,000 to help make Juvenile Myositis a Memory. How awesome! They are there right now. At #2 and they just have to hold on for like 3 more days. Can you imagine what that must feel like. Watching that calendar and the clock. Voting costs nothing. It's not like he's asking you to buy a kids record or something :) GO VOTE Hold their spot.

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Let's Talk About Something Else Today

**WE HAVE a WINNER! Congrats to Shannon Mac. Thanks for participating.

*CONTEST UPDATE- The 100 comment thing was a joke everyone. I was fully expecting a fish battle. Win this book. Do it for the fishes.

Today I am off working on the final touches of The Littlest Buddies Farewell video here at Pacing The Panic Room. So... while I am taking care of that, I thought it would be nice to send you to some places that maybe you haven't been before, places that I have really been enjoying.

FIRST UP- Rachel Devine / Her Blog: Sesame Ellis

Have you heard of this woman? Well, I met her at Blogher and we hit it off as soon as we both started yakking about THIS lady and how much we both loved her and wanted to wear her skin. Lately I go and hang out at Rachel's blog and click around her archives, and when I am done weeping, I melt into her pictures, and aside from marveling at the technical genius behind them, there is a compelling story being told in all of her shots. So they are the kind of images that keep you still and really looking. The rumor is she met the devil at the crossroads and he gave her a magic eyeball in exchange for a really great new FB profile picture. That was a stupid joke. I am just trying to say that she has a way of somehow immersing herself deep into kid world, but more importantly she manages not to disrupt the moment while she is there, so things stay genuine and intact, and the result is just stunning. So go. Get your faces into HER BLOG and really take a good hard look. You will not be sorry.

NEXT UP -Jason Hudson / His Blog: These Roving Eyes

When I first saw the blog title I thought it was a horror blog, and was too scared to click through, but I finally swallowed my irrational fear of ghosts and did take a look, I haven't stopped hitting this blog since. Jason Hudson has done the impossible and managed to morph a blogspot blog into a beautifully designed space, and you notice right away as you take your first looks around, "wow, its really nice in here." and so you instantly have this kind of comfortable-- I think I'm going to stick around vibe going on. Jason's posts are all over the design & fashion & foodie spectrum but there is a strong continuity that keeps a solid through line holding all his posts together-- everything is beautiful and displayed perfectly. His photos are stunning, and his voice is authentic, and you get a real sense that this man has mastered the art of entertaining and making others feel spoiled. He has a way of showcasing the fact that he has good taste without coming off assholish and elitist. I think its because its apparent that he has an eye for the little details in life, and sees the best in all things, whether it be people, or the curve of a chair, he isn't bragging about name brands, he has built a window into a really fascinating life, and if you read a few posts, you want to keep coming back for more. Well Cole and I do anyway. So take a GOOD LOOK at the world through the eyes of Jason Hudson.

THEN THERE IS THIS - Jason Mayo's - Do Witches Make Fishes?

I hang out with this guy for 3 days in NYC and he never mentions he has a book coming out. I have to find out through a contest he threw over at his blog, that I TOTALLY WON!!!! I never win contests, and all I had to do was make a terrible massage parlor joke. So here is the deal. Since I know I can strong arm Jason into sending me another copy of his signed book "Do Witches Make Fishes." I am going to give my copy away that I TOTALLY WON. So I guess just leave me a comment in the comment section here and whoever leaves the 100th comment wins. OR you can TOTALLY WIN by guessing what my favorite fish to eat is (Katie you can't play.) I like the 100th comment idea better (*but am totally joking) Fish Battle. Can we name 100 fishes? I guess whichever happens first right? If you have not heard of Jason Mayo don't feel bad, he hasn't heard of you either. This guy is funny, not like me funny, like actually funny, and honestly he could use some love, he just spent the last 5 days in Disney World eating Emu legs and getting rained on. He is donating profits his kids book makes to The Garden of Dreams Foundation, which when I first read that I thought it was one of Jason's jokes, and he was just talking about his wallet that he had nicknamed Garden of Dreams. It's actually an awesome charity based in NY that creates one of a kind memories for kids in need of a pick me up by immersing them in the heart of the action of major events that go down at Madison Square Garden, so these kids get in the mix with celebrities, and sports heroes, and basically get to do whatever the hell they want in the midst of all the spectacle. So... if you want to keep tabs on when his book is released, he set up a fan page on the DEVIL'S social network that shall not be named. Take a second and get in the ranks, and consider buying this book to read for your next big plane ride. Seriously just go friend this thing, and buy it. And just look at this cover. I mean the title and this illustration already has me laughing. I plan on buying copies for everyone in LB's class this year for him to give to his little buddies. Can't wait for the release. Congrats Jason. I am proud of you buddy.

AND FINALLY - I'm switching out videos. I just finally saw this, and can't even begin to describe how excited I am for this. I have had my fingers crossed ever since the rumor started a year ago that this was going down as a film. And now here it is.



All the Love in the Universe ~ Me

P.S. Feel free to return the favor and show me around blogland a little, the only rule. You can't link to your own blog. Send me somewhere new that I will love. Maybe you will be the 100th comment and win that book.

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Dear Ellen

Dear Ellen,

Last night when I was laying in bed with Cole, going over the day, and plans, and new routines (school just started ya know) we ended up talking about my blog post from yesterday. I was the one who brought it up actually, because the post was pretty much ignored. As that is not totally unusual around here, I was left wondering if it had come across off putting (I hate to make people upset). So while I am ranting along about how hard it was to get off my chest she asks, "So what's the whole humiliation of hope thing about?" to which I asked her, "Well, what did it sound like to you?" and she informed me that to her, it read like I was pretty ungrateful for all the help I had just stirred up to twitter bomb your personal account last week. She was filling out new school forms for The Littlest Buddy (school just started ya know) and she looked up from the papers, and gave me that one cocked eyebrow, kind of smirky but somehow stern serious look to drive her point home.

Did you see all that twitter bombing on your account? It was amazing, so many people got in your face about this charity, it was beautiful, and so that summation of my post by my wife instantly made me feel bad, (I hate to make people upset.) and so now I am here writing you this letter that you will never read, trying to explain myself to people that do read here, about what the heck I was going on about last night because... well, (I hate to make people upset)

So let me start over.

Dear Everyone,

If you read my post yesterday and had any kind of similar reaction like Cole's, or maybe you thought, "Geez, asshole way to be a dream smasher." I need to be clear. That post had nothing to do with Ellen, Twitter bombs, Do Fun Stuff, nothing at all. Well, maybe it did a little. Let me explain.

The Littlest Buddy has Smith Magenis Syndrome. You might have heard me mention it before, but what I don't mention around here often is what it really means to have SMS. Sure I link to sites, and every once in awhile I'll unleash a heavy detailed post about it all, but largely I keep that part of our life off this blog. There are private forums where other SMS families share their ups and downs, and work out pains. I am just one of those people that do not think you need to make a big fat spectacle out of every single hiccup in the road, because for us, the road is literally endless. So I refused to let LB's struggles become "blog material." And we have always made the choice to celebrate his talents and charm in his daily life, and so that translates here to this space. It is our priority to keep the boy, separate from the syndrome.

So with that said, let me back up.

Two nights ago before I wrote that post, I was lying in bed with Cole. I was in the midst of a confidence crumble. Nothing serious. Just serious to me stuff. The album release was stressing me out, I was worried about it not being on iTunes on time, I was worried about a job falling apart, I hadn't heard back from multiple people, I was freaking out... and being a bit of a baby actually. I kept hearing myself say "I hope" in front of every single problem. "I hope, I hope" I just kept saying it. Everything was being raised up by hope. While all of this is going on. LB is pounding on his door in his room. His routine had just been turned upside down, (school just started ya know) and so to him his world was wild. Everything is based on a set of expectations that he determines, and when something happens a completely different way than he thought, it is unsettling, and sometimes too much to take. He needs loads of extra attention when these big changes happen. And so he knows, if he knocks on the door, we will come and see what he needs. But that is a trap, the more you check on him, the more he knocks. So you make sure he is cool, ask him to get back in bed, and then you have to let him knock it out. Any attention at all just feeds it and it becomes a nightly routine. He will begin to program it as an expectation. He thinks to himself: " If I DO this, then THIS happens." It's the same reason he will watch the same episodes of a show over and over, he knows what to expect. That is soothing comfort to LB. Well he knocked on that door off and on till around 1AM, trying to get us to come check on him over and over again. And that starts to feel crazy after awhile, all that knocking.

So we are sitting there, talking about all of this stuff and LB is knocking, and knocking, and knocking, and knocking, and all of that stuff was just knocked into the ground. I was being tricked by all of this infectious gorgeous hope floating around from this blog space, and on twitter, and I was letting myself apply it directly to SMS. And it made me feel stupid. No amount of hope is going to make LB stop having SMS. No amount of hope makes it go away all of the sudden. I was being tricked thinking that a big new job, was going to make everything better, like LB would just somehow stop knocking at night because we could pay our mortgage stress free.

Oh boy, this is getting long.

So my post yesterday. It was centered around me standing and watching this gorgeous fleeting spectacle hitting a peak, and then suddenly dying and floating back into the Universe. This was me getting caught up in all of the hope swarming around us, that had been generated by so many of you, by people who are trying to help us, who took time to be loud about SMS with us, who took an interest in something that gets virtually no attention or love, and I was so immersed in all of that hope and love that I was tricked for a second. I did not keep the hope separate from SMS. I caught myself actually thinking that somehow magically it was going to make LB stop having SMS. And so I felt stupid and angry and I needed to remind myself that no amount of wishing or hope will be a fix for him, it just takes work. A ton of work, and before I had started all of this hope for help, all I did with most of my free time was work with LB on anything that he loved. Whether it be teaching him to bowl this past year, or to swim, or to draw without getting angry, and Cole taught him a hundred new signs so that he can speak to us more, and the more signs he learned the more he started to talk, and string words together, and hope didn't do any of that. Hope is a trap in that way, as I wrote in the last post. Sometimes you can get so lost in the dreams that hope spawns that you stop moving forward and I felt like I had done that the last few days with LB right in the middle of a big transition. Letting myself be so consumed with this album release and trying to make it all happen as big as possible. At the end of the day, when he is with us, he just wants to bowl, and swim, and ride around in the lake, play hide and seek, read Dr Seuss, and watch Wow Wow Wubbzy, and he keeps getting online on the Wii and watching the previews for the Dance Dance Revolution II game and when he thinks nobody is looking he completely shakes his butt and kicks his legs. It's amazing.

Let me wrap this up.

The album was conceived out of a deep want of more information. More case studies. More answers. More research. There is just so much to manage. The more you know the better you can assemble a smart therapy plan, and trouble shoot, and stay ahead of things. Cole has always known something was up with LB long before there was a name handed to her. She has had him in therapy since he was a baby, getting him OT, PT, and Speech and getting the SMS diagnosis finally made many of his quirks and tendencies make sense, but mostly the diagnosis just drops a brand new bucket of questions into your brain. The hope here isn't that SMS will go away, you can't "cure" it. The hope is that enough money is raised to generate some new research that will be an aid to care givers and parents to be better armed with knowledge so they can do the best job possible to manage SMS for their children. We are driving around without a map, and well... we need a map. When you buy this album you are chipping in on that effort.

You all that have supported this album so far, and that have gotten loud with us, and that have been excited with us, you have filled Cole and I up with so much love-- and I can't tell you without writing another 10,000 words what a comfort it is to know that we have your energy and support. My hope remains fully intact for this album, and for people to connect with the music, and yes for people like Ellen, in a position of great influence and a voice that can reach millions to be able to get the word out that SMS needs some help and attention. If anyone thought for a second that I was being a shitty ungrateful ass about Ellen not picking this charity up over her head and dancing across the TV screen with it, I was not. I was trying to share how terrible it feels to watch the hope die in front of you every day and know there is nothing you can do to save it. That is just a very small part of dealing with SMS. If you let it. It will turn you into a huge weeping baby trapped in a perpetual pity party. So lets just say I did a little too much disguising of my pity party, I was having that weak moment where I was pissed about SMS and that I couldn't make it stop, and it came off like I was being ungrateful to all of you. I guess I am still in that phase (going on 2 years now) where I just wish every day that he didn't have SMS. I don't know if that goes away, gets better, starts to make more sense. So we just make him smile as often as possible, because when he is smiling or dancing the SMS is invisible.

If I made anyone feel bad, I suck for that, and if I made you feel bad, lets hug it out and move on. Does all of this make sense or do I sound like a maniac?

Enough said I think.

All the Love in the Universe ~ Me

P.S. To Ellen, I think we all know that your new "Startle Bucks" segment would have totally worked if you had used burps and fart noises, instead of air horns and glass breaking. Just a suggestion for next time.

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Getting Back to Work

Before the humiliation of hope set in I used to sleep at night. Rise early the next day with heart, endless courage, and excitement. I’d seek out the miracles of morning and think about the luck that I have… I do not have to rush through mine. I can use them as I wish.

The light bouncing off the backs of morning dewdrops has bound down from the universe, arrived at precisely the right time, the right angle, and presents itself in this dawn as a sparkle. This light will be adored and fawned over for its loveliness this morning, and its simple for me to love this light. It has the wet of the morning that accepts the warmth that it carries, it pulls all of the speed and energy into its core, and then this water drop, takes that full force blast of energy that came barreling to earth from the sun, and stops it in its tracks, breaks it apart, and presents it to my eyes as lazy flecks of soft golden rays.

I see the day coming fast on the heels of the dew drying, and I already hate the heat that it’s promising. The big thick bloppy water drops are gone now, cast off the leaves and grass blades that they had made their thrones, reduced to little drying puddles within minutes of the sun pulling itself off the floor. And I have to really get my face into the leaves to find the last of that light that I love. It’s the water that found their thrones and perches under cover that last the longest, but the relentlessness of light will find a way to break the last of them down, and send all of it back up into the universe.

I miss that morning. I’m here now with yawns and heavy eyes, A slobbby shoulder hanging walk. I was awake again all night sweating out hope like a fever and I have a feeling that when its finally gone and sleep returns, I’ll hurry through my mornings again trying to find more of it despite how much it takes from me. The trap of hope is that at the peak of it filling me up, I let the daydream, the fantasy, feel so possible, and I visualize the outcome to such detail, that I end up just living in hope. I linger there so long that I stop taking steps towards the end goal. Hope dies as quick a death as a dewdrop, one second its shooting out life and light, and when it leaves you, all of life smacks into your chest and brain and you see again, you see past hope, and you wonder…why was I just standing there. Get up asshole you have work to do.

All the Love in the Universe ~ Me

P.S. I hope that nobody reads into this too deep and thinks for a second that I'm not going to be twitter bombing Ellen a bunch more times :)

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The First Day of First

First Day of Pre-K


First Day of Kindergarten


First Day of First Grade



Last night the house across the street had a visit from some vandals, some rascals, some hooligans, or I could just come out and say it, some asshole teenagers. There were no squares spared, this house was covered in the most magnificent toilet paper bombing I have ever been witness to. It was really quite a spectacle, and something I was excited for The Littlest Buddy to see as he stood on the top steps to our house, getting ready to venture off to his first day of first grade. I thought it could serve as a good distraction for him to get his mind off the nervousness he is feeling for this morning. He was just hit with a big disruption in his summer routine that he was grooved into. His summer is over and he is leaving it behind today to begin his career as a first grader. Per usual and right on cue from last years first day of school his frustration level sits on that boiling point, and he keeps telling us all morning "I'm mad." He shakes his head NO when asked if he is excited about school, but then catching himself in a lie, smiles that incredible grin and flaps his hands in excitement when we start naming his teachers, friends, and therapists.

His morning is different, there is a backpack to put on, out of his pajamas and into clothes and shoes before it is light outside, we have been telling him about school for the last two weeks. He shouts "SCHOOL!" anytime we drive past it, and he sees it out his window in the car. "SCHOOL!" when we would ask this weekend, "What are you doing on Monday?" So off he goes into the first grade. This is going to be a tough year for LB, this is the point that we have been reading about that will be hardest for him to move past. There is this kind of perpetual kindergartner thing that happens, this is the year the pushing really has to start, and so the PUSH back is more intense. I'm nervous for it. You can see the ease and skill and wisdom when he is navigating a Wii. When he explores the internet. But you put a crayon in his hand and within seconds he melts into madness and you can see how rigid and stifled his hands become when asked to be purposeful and exacting. Even his scribbles take effort and that effort turns to frustration. He has a comfort within electronics and technology that puts him past his peers, and then is reduced to frowns and tantrums by a crayon. Fist grade, bring it on.


**************DO FUN STUFF UPDATE *************************************************

THE ELLEN BOMB- Despite a heroic effort on Friday we did not hear from anyone over at Ellen's camp. Yet. I am confident that we made enough noise for someone to take a second and say, "geez you psychos, fine we will take a look at this #dofunstuff thing" I imagine that there are a billion filters to get through. My hopes are high still, and I feel like with a little more strategery put in place we could make another go of it by Wednesday if I have not heard anything by then. Circle the wagons, gather the troops, rally caps, whatever you want to say. We need numbers.

Did everyone see THIS? I'm proud of that. It was incredible to hit that #dofunstuff stream and SCROLL DOWN and see all of that support and effort being put into this. You have no idea how much I want to be able to read a new case study about SMS and know that it was made possible because of the money raised from this album, and having a lightning rod like a nod from Ellen hit this album would be the magic I wish for when I daydream about the success of this album.

The WEB STORM- If you have signed up to be part of the thunder behind the lightning, you will be getting an email this week letting you know the details for the mass posting on the 30th. It is all coming together. Hang in there and just know it is coming together. I am doing the best I can to juggle all of this. The plan is to get everyone the embed codes for the DO FUN STUFF widget by the 27th so that all you have to do is slap that code in Blogger, Wordpress, FB, whatever platform you use, for Monday the 30th and you will have all the info you need. All in an adorable monster eating ice cream self contained widget that will have all of the info. Awesome.

NEW here and want to get involved with this? TAKE A READ HERE and send me word.


All the Love in the Universe ~ Me

P.S. You see the Weekly Artist Feature up top there? You see it? PLease go and click it! That is Radical Face you might remember his track "Welcome Home" from the Wedding in Seven Minutes video I posted here.

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To The Rainmakers

*UPDATE- Everyone has been so awesome today int his effort and I wanted you to know that we were loud enough for the Orlando Weekly to notice. This is a nice start. So cool. So grateful. This is a good start to getting this album and SMS noticed. READ HERE

Yesterday was one of those ridiculous days where I grabbed onto a P.S. from my post and fell far from my earth completely enveloped in the dreamy dream of what ifs and the how greats trap. You know where your head kind of slopes to the side a little, and your mouth cracks open, your jaw swings loose, eyes shine over with a thick maple glaze. It's not flattering... that drooly agape look, it rattles people, and when someone else passes you by that knows what you're supposed to look like, when they see your soul trapped in the 100 yard stare, they slap their hands in a bang, and shout, "SNAP out of it!"

That was me. All day yesterday. In between hooting at my twitter stream like a cheerleader. Belly laughing at some of the tweets I was reading, and rising and falling front row on the roller coaster of "We're really doing it!" Flashes of deep pride and thankfulness, then the plunge into disappointment and frustration. 'COME ON!!! WHY? WHY won't you look?" JUST LOOK!" I was deep in the epicenter of a full on flash burst of an Ellen Bomb.

For those of you who have no idea what I'm talking about. At the end of my post yesterday about the SMS charity album, as a Post Script, I suggested that perhaps readers here should engage in some tasteful pestering of Ellen Degeneres on her twitter stream in an effort to get the band Rabbit! to play a track from the charity album "Do Fun Stuff" on her very popular and hilarious show. I pictured a bunch of toothy smiled kids and wild arm flapping toddlers pogo dancing, all having a giant dance party to the tune "There's Always a Blue Sky" on her show. It was one of those ideas that you write down in a post, and then one person starts to believe it can happen with you, and then another, and then all of the sudden I'm screaming like a freak at my computer screen "YEAH!!! This CAN happen!"

So after a good nights sleep, some soothing centering deep breaths, and a reality check. I have decided that the only reason it didn't work was for TWO reasons.

The first being simply that we weren't organized enough. You see Ellen was totally preoccupied yesterday with her nighttime QVC appearance. She wasn't thinking about twitter. But today. Today is Friday, and you know NOBODY really works on Friday. Friday people play foursquare, and book elaborate vacations online to see how much it would really cost to go to Thailand for 10 days, assemble Amazon wish lists, AND... of course, read twitter streams and click links as often as possible to pass the time. Today, she is going to be looking at Twitter. Today is our day. Remember, Ellen is on California time, so all of our East Coast pestering went largely unnoticed most of our morning. Ellen was fast asleep while we were being all "COME ON just look." So today we need to wait. All pipe up and chime in at once. In one super focused concentrated mob of please.

The Second reason it didn't work, is that not enough people believed that it could work. Why won't you just believe? So today is your chance to stop being so logical and rational about how the universe doles out chance and opportunity, and you need to start to believe that you can effect the universe with your ability to be loud. We see examples every single day online about a little spark that turns fire and the smoke gets noticed. Set yourself on fire today with me.

So here is the plan. Starting today at 12PM EST please be sure to sign into your twitter account, and at least once today. Drop the Ellen Show a tweet on behalf of #Dofunstuff and ask your followers to RT for you. That's it. that's like 30 seconds of your time. THIRTY SECONDS!

Don't feel embarrassed that you sent a tweet to a big huge celebrity and think that it somehow makes you seem childish. Even if you still haven't gotten over the rejected disappointment you felt as a child when you joined a fan club and wrote your favorite star only to never get a response. This is our chance to squash that old ghost. Ellen is going to respond, she is going to respond, and my resentment about the Mr. T fan club is going to vanish and my shoulders will lift, and I am going to get a chip of confidence back that a celebrity stole from me when I was 12. We can totally do this.

TODAY: 12 PM EST

WHAT: Ellen Bomb

WHY: To get the charity album Do Fun Stuff on the Ellen Show. Remember 100% of the proceeds raised from this album will fund the further research of Smith Magenis Syndrome. Just think of how well it would do if that many people heard these amazing tunes.

HOW: Sign into twitter and send a tweet to @TheEllenShow and be sure to include the hashtag #dofunstuff. You can come up with your own message. Or just Retweet the ones I send out today at 12PM.

WHAT TO INCLUDE: You can lead Ellen back to yesterdays post that contains a ton of good info and links about the album and SMS. It is the most comprehensive and informative. That is what I will be using.

HERE IS AN EXAMPLE: Dear @TheEllenShow I am writing about a dance party http://bit.ly/94FDDj #dofunstuff

Be polite. Be funny. Be bold. But don't get nasty and suggest that she somehow doesn't care. This woman is asked for help by thousands of people a day for all kinds of noble and worthy causes. She does care. She is one person. Don't get crazy :)

AND, lets stay focused today. The dream is the Ellen show. leave poor Jimmy Fallon and Conan alone :)

AND...

As a little present for your effort and time, and belief and love. I put up a new song from the album here today that will be available for sale on Monday August 30th on iTunes. They are all favorites. But this one is filled with so much pep, and hope, and charisma that I thought it was just perfect for the Ellen show. And for you old classic rocker fans, this particular kids tune gets EPIC and old school, and shines with a bright glammy sparkle that will rekindle your love for rock ballads. You will be proud to flap your arms around with your toddler to it.

TREAT YOURSELF: "There's Always A Blue Sky" by Rabbit!


I'll see you all on twitter today. If you do not follow me. You can do that HERE. If you want to follow Ellen you can do that HERE. OR maybe you want to go ahead and UNFOLLOW me, well you can do that HERE

All the Love in the Universe ~ Me

P.S. To every single person that joined in yesterday and got ridiculous with me on Twitter I adore you. Cole adores you. It really started to feel like it was going to work for a second there. didn't it? And your belief in it working yesterday is what spurred me on to try again today. You made me actually think this could work. So thank you for your energy, I so needed.

P.P.S. I want to know if you think this is going to work. I want to know who is with me today. So please drop me some confidence in the comment section and let me know if you will be shouting please with me today.

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I Interview Myself Because Nobody Else Will

Let me just bullet the details out quickly...

* As most of you know I have been working hard to put out a charity album to raise funds and awareness about Smith Magenis Syndrome-- a rare genetic disorder that The Littlest Buddy was diagnosed with.

* If you are new and do not know anything about this album at all. Just keep reading. It will all start to make sense. The short of it: A kids record was made. It's good. Real good. Kids love Music. BUT Parents like Kids Music that does not make them want to jam hot pokers in their ears even more. When you buy it 100% of the money goes to PRISMS and will help the SMS community.

* The online distributor I used to put out the charity album on iTunes cannot guarantee me the release date I selected of Aug 23rd. They could only say: "Your album should be available before Aug 30th"

* So to be safe and NOT have some big hype machine boasting about an album that you can't find for sale, I went ahead and moved the release date to Aug 30th. That's right. August 30th.

* August 30th it's a Monday.

* Come on! I am doing this on my own here. I'm sorry.

So yes, I am going to spin this on the positive, it gives me another week to really focus and get even more organized and hopefully even recruit a few more bloggers to post about the album. The big idea is that on the release date NOW AUGUST 30th we will all post on the same day this adorable little Monster Eating Ice Cream widget that is being made. It is almost ready and for anyone that has signed up to help. The very first email will be going out to explain the plan, it is coming soon. So very soon.

Imaginary Person Who Gives A Crap

So Ryan, besides posting about the album on AUGUST 30th what else can we do to help?

Me

Well, if anyone wants to change their twitter background to look like THIS, they can. AND anyone that wants to paste up an ad like the one I have hanging out in my sidebar they can do that as well. Just shoot me an email HERE! and I will send you the art. We just need to wait until AUGUST 30th so there is an actual link alive that sends people to iTunes to buy the album.

Of course being as active as we can on twitter is going to be a HUGE help. So don't be afraid to be a noisy hooligan about it on Twitter. If you do not follow me on Twitter, go ahead and do that NOW so we can stay in touch with the news about the launch.

Imaginary Person Who Gives A Crap

What kind of music is on this album? Why do we want to buy it?

Me

Let me answer the second question first -- You want to buy it because every cent of the proceeds goes into a grant fund created by PRISMS, and the money raised will make cash available to grad students who select SMS as their focus of study. This will create new case studies that provide parents like us with some answers and insight into better ways to manage SMS.

As for what kind of music is on the album? I have posted two samples of what you will find on the album in older posts, but I will go ahead and just post them here so it is easier to listen. I asked a bunch of friends to please make some music that is kid friendly, but not too hard on the parents, so what I got back was a great record of songs for kids and parents to enjoy together. I am calling it a Kids record for Parents.

Hip Hip Hooray It's My Birthday - by Rabbit!


It's Potty Time - by Cracker Jackson


Imaginary Person Who Gives A Crap

Oh WOW! Those songs were fucking incredible!! Whoops, that wasn't very kid friendly, sorry. So when is the album going to be ready?

Me

You didn't read this post did you? You just listened to the songs and skimmed to the bottom. The album will be available AUGUST 30th, and there are 13 total tracks to choose from. I think it would be smart to go ahead and buy the whole album, and the limited edition posters that ANNA BOND has made, that are printed by MAMA's SAUCE. Since all of the money is going to charity you shouldn't feel guilty for spending with wild abandon.

Imaginary Person Who Gives A Crap

So what happens if I am new to your blog, and just started reading about this, and I want to help? Because I do want to help.

Me

You really are a great person Imaginary. Just go ahead and send me an email HERE! and in the subject line just put "I'm Here to Help LB" that way I can filter the emails easily. That way I can include you in the big web storm we are brewing on AUGUST 30th. So far I have over 300 strong all signed up to help be noisy about this album. The idea is to get everyone posting and tweeting and yapping about it all at once so it has a greater chance to spread. Basically you all are going to make it rain. You're all rainmakers. Making it rain.

Imaginary Person Who Gives A Crap

Come on dummy. I said I was new here, who is LB?

Me

Sorry about that. You can take a look around and find him all over. But if you click on the labels under this post, you will quickly fall in love and learn about SMS a little from our perspective.

All the Love in the Universe ~ Me

P.S. What do you all think about tastefully bugging the crap out of ELLEN today on twitter about letting Rabbit play one of the songs from the Kids album on her show to promote the charity? It would be a pretty awesome dance party. If you do it please use the #dofunstuff hash tag, and be sure to say please. Please :) I mean that would be an amazing accomplishment if we could make that happen through twitter. Rainmakers

P.P.S. If anyone actually does have any real questions or just wants to discuss SMS or the album or how awesome it will be to have a kids dance party on the Ellen show. We can go ahead an talk about it in the comments section. I made myself available today to just focus on the album. So let me know.

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She's Got The Magic

If you have never been here before and have never seen the series. Please click HERE and start scrolling down.

* I decided to make this video so that everyone could see how much fun Cole and I had making these images each week. Her personality and sweetness gushes out in front of the camera, and when I look at these images I can still hear the laughs hanging in the air.

* I decided to make the series into a stop motion video around week 36 of Cole's series, but did not tell her about my plan.

* It was meant to be a surprise after the baby was born.

* I started blabbing about it on my blog and ruined the surprise.

* I have not been "working" on this for over a year, as much as I have been putting off going through the hundreds of photos for over a year.

* My best friend Devin from the band Rabbit! wrote the song "Magic" that is used in this video for Cole. A pretty amazing pregnancy anthem. Don't you think? Rabbit has an album coming out with the track on it in just a couple weeks. Buy it. If you FOLLOW them on twitter you will know when it comes out. Please do.

* When I first started the series the only thing I had to light with was a barely functioning SB600 speedlight shooting into an umbrella. I was not pleased with the results.

* My good friend JASON lent me a set of lights to use around Week 20, and I had no idea how to use them. You can see as the series moves along, I begin to figure out how to light. Sort of. This series would not have been as lovely without him.

* LB loved the lights and wanted to be in each weeks photo.

* Our dear friend Lawton teased us the first two weeks of the series in the comment section and said that they should be an American Apparel ad. To be smartass Cole dressed in AA the following weeks, borrowing outfits from one of the GIRLS at the salon. The original plan was to photograph Cole in the same blue track shorts and bra each week.

* After American Apparel saw the first few weeks of the series, they donated all the clothes that Cole wears each week, with the exception of her favorite pair of jean shorts that belonged to some dude in a band that she got as a hand me down from one of the girls at the salon. He's a little dude. And week 39 were not AA clothes...

* THIS and THESE were favorite things that Cole wore during the pregnancy. And with that said, we would be terrible people if we did not thank American Apparel one last time for their contribution, and for making getting dressed so much fun for Cole during her pregnancy.

* The majority of the pictures were taken within 30 minutes of Cole waking up each week. So she yawned in almost every single session. Each time she would tell me "you should use the one where I'm yawning."

* I lost all of the original week 40 photos in a hard drive crash, with the exception of the finished series piece that I had luckily uploaded to flickr. Back up your hard drives people.

* The bulk of this blogs community was brought here by this series, largely because of posts, HERE HERE, and HERE, and so many other amazing photo and design, and inspiration blogs that gave this series love... for those of you who have remained, thank you.

* Making this series remains the single greatest thing I have ever done with a camera-- and documenting and blogging about each week brought Cole and I closer together in ways I never could have imagined. It was constant love and communication and basically amazing therapy during some of the craziest moments of our marriage.

* I can finally say that I am finished with this series.

All the Love in the Universe ~ Us

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Place Holder

Over a year ago I mentioned I was going to post a video project here that would conclude Cole's Maternity Series. And well...

I didn't. I did not do it. You know how things get. Don't you?

A week ago. I plastered my crappy little corner office in our laundry room with post-it notes of all the projects I had to get done and off my computer this week, so I can move on to new projects with no casualties. With no regrets looking back.

So Here is a Place Holder just like I used to put up during Cole's series, because today I am going to finish that video project, so that tomorrow morning I can post it here and finally be done with it.

As usual with the Place Holders, I turn to music.

* A little backstory about the video below. I shot this with my good friend Mike Marshall. We made this video for my best friends band Rabbit, who contributed a ton of awesome tracks to the charity album by the way. The album would not be possible without them.

The concept for this video was simple. They were looking for a creative way to get the release date out there for their album. And so. I was like, let's do it old fashioned, I remember these great old timey images of politicians draping campaign signs over cows, and horses at carnivals. And I wanted to get them all to sit on a donkey or something with their handmade sign.

Well... since everyone was afraid to go near random cows and horses to drape a sign over them. I knew about this pig named Pork Chop that hangs out at this great airboat place on the way into Titusville, FL. So the band got together and made a sign to drape over this giant pig. Well...

It turns out they were all afraid of the pig too. He is pretty big. Enormous teeth. But we felt terrible for bothering Pork Chop. So we fed him treats instead and left him alone. Decided to just be his friend. So we ended up just going to some carnival on the side of the road instead and ate tacos and played.

Not very organized.

But a video was made. This was literally the first time I ever shot with a 7D with the guidance and instruction of my buddy Mike Marshall who did the bulk of the shots you see here. Including strapping himself into a swing chair backwards and being flung through the air to get some of the carnival shots.

See you tomorrow with the video to conclude Cole's Maternity series, a year in the making.

All the Love in the Universe ~ Me

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Announcing: Do What You Love

I have been hinting and making little vague references to some big cool news around here for a couple weeks now, with no real details or information to go on. Sorry about that :) As things continue to develop and take shape, I feel like now is an appropriate time to share this news with the very good people who read here, and for those of you who have been reading from the beginning, you know more than anybody how much I have been trying to get my photography career going. You remember how low things got when NOBODY was hiring photographers in the midst of this newly dubbed "Great Recession."

One of the most unexpected and wonderful surprises about this blog, is that I get a number of private emails from people from all over that get a little comfort out of reading about someone else trying to make their dreams come true. They are usually emails from people that are on the fence about whether they should be heading down a safer more conventional career path, or sticking to their guns and continuing their push to get to a place where they can support their life on their own dreams. I don't just get these from fellow photographers, but all kinds of dreamers. It's truly awesome, and in turn, it inspires me. It has opened my eyes wide to find all kinds of people out there that have discovered ways to make a living doing what they love. I see it everywhere, and I feel like one of the only good things that came out of this recession and dark times, is that for many people when the doors were shut to conventional jobs or they became victims of cut-backs and closures, they did not lay down and take it, they rose up and turned to innovation. They looked within their own hearts and the entrepreneurial spirit came alive, and I see so many people who have found a way to work for themselves, and when jobs could not be found, created their own. Or just decided: "Screw it! I'm going back to school so I can become what I want." Or for people who lost a big chunk of their clientele figured out ways to attract new business. If you were looking for it, and not watching CNN drone on about speculations of how doomed we all were, there was a movement happening. People finding a way to Do What They Love. It was reassuring and exciting, and really helped keep me plowing forward toward my goals. When the sea of employment opportunities dried up, jobs became sacred in a whole new way.

Have I told you the news yet?

Another thing that I have referenced several times is the huge amount of rejection that is involved in constantly pitching ideas to brands, or dreaming up campaigns, or ways to tie in photography in a way that has not been done before on the web. So in the midst of doing this, and drowning in a sea of NO REPLIES. I had thought up a new maternity series that I wanted to do, and I knew that I wanted to go after Gap Maternity to see if they would be interested in donating clothes to the cause. I just wanted some clothes, and I wanted to do one last series that would really cement what I do in celebrating a pregnancy. I have been so lucky in the first two series to have such great clothes to pick from, and I wanted to carry on that tradition. So I tracked down a name at the Gap, wrote my pitch, crossed my fingers like I always do, and nothing. I did not hear anything for weeks. And then...

All of the sudden I do get a reply, and it was incredible. They loved the maternity work I had done, they said sure we can support your series with clothes, but then out of nowhere I was simply asked, if I had any ideas or effort I would like to put towards the Gaps new denim line for the web. The 1969 line-- specifically the womens division. I did actually. And so I ran it by them, and they loved the idea, and all of the sudden I was sitting at home slack-jawed and scratching my head, and said to Cole: "The Gap just hired me to do a web campaign." and we cried. It felt incredible to have someone put so much belief in an idea I had, and then to just let me loose. I keep inching closer and closer to realizing the dream of being a full time photographer putting food on the table for this family by what comes out of my camera. It was even more sweet that I was getting to work with the Gap, because ever since they launched their Born to Fit line Cole has been after me to work with them. She would bring me magazines and be like-- "Do you see what they have been doing? It's cool, get on that." It has been moves like that. Small moves, but the fact that Cole can show me something in a magazine and suggest that I find a way to work with a huge brand. She just believes that I can do these things, and so I start to believe.

Are you ready to hear what i am going to be doing?

Starting in a few weeks, on Monday mornings, I am going to begin a new photo and video series here on Pacing The Panic Room where I will be profiling women from all over who have found a way to Do What They Love. I drew from the one thing that has inspired me the most, finding people that are living their lives on their own terms and truly doing what they love for a living, from artists, to teachers, to candlestick makers, anything that keeps a big smile on the face. Of course I wanted to start with two women that you all know the best Cole :) and then Trish, and then I wanted to introduce you to more, so many more, from all over the map. Sharing in a deeper way what they do, and how they got there. Finding these stories has been a little army of reassurance that it's okay to run down lofty ideas, to have total belief in yourself. This isn't about people with magical fantasy dream lives, this is about people that found a way to make their life less complicated and happy by following their hearts, and doing something that moved them. So as things continue to come together and I get this series up and running and fully realized, I wanted you all to know what the heck was going on around here, and especially to all the people that have written with encouragement, or support, or just a friendly hello, I need you to know how much that means to this family. Thank you.

So.

Monday mornings. Starting somewhere in September, (I am not totally sure yet.) The "Do What You Love" series will begin, and will also proudly be appearing HERE. I am so happy to be making these images, and profiling these women, and for Gap to give me this chance to tell their stories. It's going to be a blast. I can't wait to share this project here.

All the Love in the Universe ~ Me

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The Tweaks

Cole showed me this photo & said: Reason #355 to smile- Going to bed 45 minutes later than your sister

They had been hiding out in the back of the house, and I noticed how quiet it was, so I had gone looking. They were hanging out in bed, LB all smiles and giggles, and he was calm. Just the two of them. Cole made the decision while I was away to switch bed time up a little, putting Tessa to bed 45 minutes earlier than LB, and that one little switch has made this kids world. He soaks up every second of his alone time with Mama. In most cases when it comes to Smith Magenis Syndrome making changes in routines are a catastrophe, but every once in awhile you make the right adjustment and you hit it big. It seems silly after you make a change like that which produces such grand results, and you realize, "well geez that was freakin obvious." We pick these bedtimes and routines and rituals, and then all of the sudden its all a big trap: "no, it's their bedtime, that's how it has to happen." but Tessa can take change, and easily adapts, and so to her going to bed 45 minutes earlier is hardly noticed. LB's bedtime stays the same, he just gets the one thing he craves every second of the day, one-on-one focused attention solely on him. He just breathes easier when it's just him and his Mama. Every single day we make these tweaks to our life to produce that smile you see up there. That's our job. And we are good at it. We have to be, there isn't a choice.

14 days till retirement. This boy will be 6. Last night Cole found a blog written by a mom that has a 10 yr old son with SMS, and we read her post about the Doctors telling her the diagnosis, and what ran through her head, and all the things she had to say goodbye to. It was astonishing to be reading such similar reactions and thoughts, and seeing such similar paths that led to the same worries.

The week of the album release I have asked some parents from the SMS community to share some of their stories here at PTPR to shine a little light on this rare genetic disorder, mostly so people know what their money is going towards when they purchase the album. I'm putting this out here now in this way, wondering if there are some quiet readers around here that have a child with SMS. If you are interested in getting in touch, to do a post, please EMAIL ME, and we can discuss the details.

Be sure to keep checking out the artists in the Weekly (more like 10-15 days) feature that are posted at the top of the blog. All of these artists donated their time and energy to make music for this cause and I love them for it. So give them a little of your ear and maybe you will discover a new favorite band.

All the Love in the Universe~ Me

P.S. If you SIGNED UP to help with the album launch I am almost done getting things ready for the big web storm post. Hang in there. It's all happening.

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The Reconnect (hello again family I missed your faces)

After 72 hours of editing and staring into a computer screen at dance machines, I needed to be around my family in one of their most favorite places, and I needed to see them light up, and be happy. So I said: "Family! We're going to the beach."

And so we did.

* Because people have asked about stuff. I edited the Dance Party, and almost all of the videos I have done, with iMovie. It is simple, and fast, and has great options, and Apple does not pay me or give me stuff to say that. Although they should :) The one thing I will say is that I do not use their slow motion features in iMovie because it never looks smooth. I shoot my slow motion clips in 60 FPS and then take them into Cinema Tools and convert them into 24 FPS and then bring those clips into iMovie to use, and they look smooth and awesome. The only thing iMovie does not have are star wipes. I would love some star wipes.

All the Love in the Universe ~ Me

P.S. I have a BIG push on my plate to get the charity album "Do Fun Stuff" ready to launch and to get all of the people who have signed on to help organized and ready. So I am going to be real out to lunch on some things around here.

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A Dance Party

Today I am sending you away from here. I am encouraging you to go. I'm sending you off to MamaPop to please watch, hands down, one of the most favorite videos I have ever cut. I am still pretty new to this whole video making thing. I feel like I'm starting off with shoots that will be hard to top, and this last job I did for Mama Pop shooting their annual Sparklecorn shakedown was easily the most fun I had going through the clips.

For those of you who don't know. I was hired to travel to NYC to the Blogher conference (which is a blogging conference for women, the biggest of its kind, and like 25 hundo attended this year, it was at the Hilton on 6th, it was awesome) I was recruited by THIS lady to shoot the Mama Pop party that they dubbed Sparklecorn. It quadrupled in size from last year when I shot it out in Chicago. It's an incredible experience (from the male perspective) to see hundreds of women completely cutting loose in a club setting minus the mix of dudes (the exception being a handful of gentlemen that write for the site). Out of all of the club nights I have promoted through the years, and bands, and tours, and booking the bar, I have never seen an event where the doors open, and before the DJ has gotten through the first 30 seconds of the first song, the dance floor is filling up. These women didn't rush for the bar, they hit the dance floor, and it stayed packed until the lights came up. It feels like what the last party on earth should feel like, just people completely letting go, being silly, being beautiful, full toothy smiles, and celebrating who they are with no worries about tomorrow. I love that I get to see this.

After Cole saw this video, she was like: "Umm, can i go to this next year and dance with these girls?"

As much as I love the stills that come out of this party, because of the flash, it always blacks out the background, and you lose the scope of this event, so this year I wanted to really capture the force of the crowd, and the vibe of this party. So I rented myself the Canon 7D and the hero of low light the 1.2 50mm and shot wide open, and jacked up the ISO to 3200. I knew it would be grainy, but it gave the footage a nice gritty down and dirty darkness to it. Shooting wide open like that is the only way to get an image, as it was practically pitch black with the exception of disco ball lights blazing. So I fought focus constantly. It was a great challenge to walk away with the fire that was the dance party.

So HERE it is. Seriously please check this video out and leave a hello over at Mama Pop for me so I know you saw it. Thanks a bunch and until next year, this concludes my posts about Blogher and Sparklecorns :)

GO WATCH THIS VIDEO... set to one of the greatest remixes of all time. All time. I said it. All. Time.

All the Love in the Universe ~ Me

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Cole The Phonetographer

When all you have is an iPhone for a camera you make the best out of it I guess. I almost never use my phone for pics. I have what you call earthquake hands and need a giant heavy SLR to weigh them down, and even still I have shake. Cole on the other hand has really taken to the fact that this phone has a camera-- we don't own a carry around everyday, quick grab, magic is happening right the fuck now camera. Although I still have pennies going into a coin jar for my dream point and shoot. So Cole steals the show on darling moments being blasted into pixels for the scrapbook. She has such a great eye for composition through a phone. When I got back from NYC she was sharing some pics off her phone while I was away, and I liked them so much, I decided it was time to go ahead and post up some of my favorites.

She uses the Classic INSTA app on her phone to get this poloroid look. One of the first "dates" we ever had Cole came over to my apartment with a giant basket of LB's toys and a poloroid camera to take hilarious pictures. We never actually got around to shooting any pictures that day :) That was a weird tangent, I was just trying to say the girls loves Poloroids, and this gives her a good fix.

What iphone apps are you using for camera grabs? I used Toy Camera a couple times and never truly explored it, but curious if there is any really wonderful gem of an app that someone is loving.

Are you blown away by what you can capture on your camera? Well... Here are two more Phonetographers that blew me away with great camera grabs, HER and HER. Both women write a great blog, and both women I had the pleasure of meeting in NYC this past weekend. It was amazing to have the internet come to life.

Enjoy the photo lurking.

All the Love in the Universe ~ Me

P.S. There is a good chance that the first of the slideshows I made for Sparklecorn will be going up at MamaPop later today. Maybe around lunchtime. It's just a little taste before I finish the big show. I will update this post with a live link when it goes up.

*UPDATE- The first of the footage I gave Mama Pop is up over at their place. GO TAKE A LOOK

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What I Was Trying to Say

So if you do more than skim posts around here, and you actually read along, you know that this last weekend I went to NYC to the lady convention known as BlogHer and beyond shooting the always fun MAMA POP party, I was asked to sit around and talk about photo editing.

Here's how it went down. if you have ever heard a man stand around and say "ummm" a thousand times, none of which lead him back to a coherent point, then you saw my presentation. I was a giant stuttering UMMer. I was totally thrown off when I started things out asking, "who in this room is a photographer, or an aspiring photographer?" and like 5 people raised their hands. I was like uh-ohhhhh and immediately had to abandon ship, and switch to my plan B, which was not as well planned. (totally my fault)

I wanted to do a quick post, and clear up what I was trying to say in my 20 minutes that flew by in a blink. So... here is what I was trying to say during all of that mumbling and fumbling.

* If you want better pictures for your blog, you should be taking better pictures. Period. The better your photo coming out of the camera, the greater you will be able to use your editing software. Subtle moves to enhance and bring out nuance in a photo, instead of using your software to construct and paint a photo back from the dead. I wanted to make sure that this wasn't a situation where I was saying "it's okay to take terrible pictures and rely on post to fix them. Sure there are going to be times when your kids do something amazing and monumental and you have only a second to grab the shot in whatever setting the camera happened to be on, and it is great to know how to help that picture, but across the board relying on post to make great pictures is a dangerous trap.

People get trapped in the "I'll Fix It in Post" mentality and they shoot and shoot for years, and just know that at the end of the day, they will do whatever tricks they have picked up to make their pictures viewable. But, what you get is a heavy over processed photo, and 10 years from now, when you look back on your pictures you're going to be like: "what was I thinking?"

* Another editing trap is when you pick up a trick, you learn a new tool, and then you feel like you have to start doing it to every single picture you process. Just because you learn how to do something new, does not mean it has to be used in every situation. I used myself as an example, and spoke about the early posts here on PTPR where I was putting a vignette on every single picture. WHY?! I did it once and it looked cool, and then it became a step in every picture I processed. It made no sense, the pictures look foolish and amateurish just a couple years later now. They haunt me. Sitting there in public as a reminder of what not to ever do. So yeah, the big point was not to get lost in the trap of feeling like you have to do something to every picture you take. Just because you have photoshop, doesn't mean you have to use it every time you process a picture.

* The last thing I wanted to be sure I got across was not following trends. I used the DOOCE effect as an example, I hope it didn't come across that I was saying what she had done was terrible. So let me clear this up, Dooce has a very distinct look on her blog for her photos, and she did it consistent, and she did it well, and you could pick out a Heather Armstrong shot out of a line-up because she had developed a post processing style that was totally her own. What happened is her blog is insanely popular and everyone starts trying to do HER thing and not THEIR thing, and all of the sudden people are pushing it to insane limits, and you have these crazy unrealistic over processed pictures where kids are glowing like night-lights, and have over diffused zombie eyes, and pixels exploding and breaking apart natural colors from heavy handed saturation tools. Don't follow trends when it comes to post processing. It's another situation where you're going to look back at your pictures and think: "What was I thinking!"

So that's it. Simple. I didn't have time to get into too many live examples. The time flew by. AND my only complaint that I would have to voice, and am only doing so to help future Geek Lab photog presenters, is to be sure to have a better quality projector, or some flat panel screens for the room so the photos being projected, and the live demos of the work being done have better value to the attendees. It was hard to show examples of how effective subtle strokes and little touches have on a photo, if you can't really see any detail. I think it would help a lot. I think all three of us on the panel spent a good few minutes apologizing about it. It wasn't a catastrophe, just a missed step I think.

AMY and PAULINE who invited me to be on this panel, had their ideas well formed and all organized in power point and smoothed through their portions without issue. I kept sitting there wondering what that must feel like to be that organized. Big thanks to them, for putting up with me and inviting me to be a part of it. It was something I was happy to experience, but also something I am not sure I am very good at. It pissed me off enough that I actually hope to get into another situation where I get to do a live discussion so I can do a better job.

I am off to bury my head in party pictures so I get them over to Mama Pop for some looks.

I love shooting that party, and can't wait to show off the video of the dance party (coming soon)

I am leaving you with a couple pictures I took of KATE INGLIS that I used as examples during the Geek Lab. We wandered around Soho the day before, and I just tried to grab some pictures before we lost the light. Kate had never been to NYC before, so it was really cool to walk around with someone that was falling in love with all the sights and sounds of the city around them. I wanted to grab shots that said: "I'm in New York Mother Fucking City!!!" but without standing in front of Time Square to do it.

I will have more to say about my experience at this conference later on down the road. I will say this, there were two high points, the lunch I had on Friday with some of my most favorite bloggers was the highlight of the trip. It was the one thing I had been hoping would happen the most. It was perfect, and lovely, and hilarious. And the unexpected invite to THIS guys studio/office to hangout with some of the funniest people online at the Mama Pop writers party. Laughs were plenty, and if it weren't for the presentation I had to do in the morning, I would have hungout with that crew till the sun came up.

More later.

All the Love in the Universe ~ Me

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