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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