taleS froM the trencheS: Do Fun Stuff

Sunday, August 29, 2010

Do Fun Stuff

Today is a big news day in the SMS community! (Today, as in MONDAY AUGUST 30, 2010...pay no attention to the wrong date above.)

The first ever charity album for PRISMS is being released. And you do NOT have to drive across town and stand in line to get your copy! Apparently, you can buy songs across the internet now...who knew?

"Do Fun Stuff" is a collection of orginal children's songs and 100% of the proceeds will go to further research for Smith-Magenis Syndrome. We have already listened to one of the songs and the boys love it. It has the word "pee" in it...what's not to love?

All songs on "Do Fun Stuff" were donated by various artist friends of Ryan Marshall, the step-father of child who was diagnosed this past year. Ryan has put SO much work into this project! I am amazed by parents who manage to get beyond the grief of the diagnosis and move right into "how can we help other families" in a year's time.

We hope that it is such a huge hit that PRISMS can fund a graduate student to research SMS and support our SMS families.

Read below to see how you can purchase music across phone/cable lines (and whatever wi-fi is made of).

And Thank You, on behalf of our PRISMS family!

I am going to go attempt to download it now.

Just last week, I threw out my cassette tapes. I almost took a picture of the big pleather box (which opened on BOTH sides!) laying in our trash can. I'm sure Charlie believes I hid it somewhere because he's been saying I need to get rid of my "junk" for years now.

I will admit that I kept my Milli Vanilli tape because I know it is going to be worth money someday. I am the only one who did not take it to the radio station to be crushed by a steam roller....

1 comment:

goldlionazAugust 31, 2010 at 6:58 PM
Thank you for sharing your story on Ryans blog. I loved reading it, it is so eye opening.
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Operation Order:

Although every parent dreads the day a sheriff’s deputy stands at the front door with her child; only we unique moms get to experience this event with our first grader, dressed in his favorite Dora pajamas, who tripped the home alarm system in the middle of the night. Yes, I said “his” favorite Dora pajamas. My blog, “taleS froM the trencheS”, tells the paradox of our “normal” family that just happens to be a little different.

When our first child, Garrett, was diagnosed with Smith-Magenis Syndrome (SMS) at 18 months, my husband and I were terrified to live in a world we had never even visited. Autistic-like issues, a disturbed sleep cycle and the self injurious behaviors that accompany this genetic condition can make life more difficult. But fifteen years and two brothers later, Garrett keeps us laughing despite the challenges.

Stories about our adventures are entertaining, but the bag of tricks we have acquired as Garrett’s parents are beneficial to any family living with sensory integration issues. The bus ticket he hands the driver each morning helps him make that difficult transition from home to school. (The bus ticket looks a lot like the roll of raffle tickets you can buy at Wal-mart for ten bucks.) We have a shopping bag with check lists and coupons to keep him occupied at the grocery. He has a bag at church with the directory of everyone’s picture and nativity finger puppets to act out the sermon. Sometimes we have more “bags” than “tricks” and are not able to stay this one step ahead of Garrett.

Another difficult step in the SMS Dance is trying to balance our younger typical children and their activities. My husband, Charlie, and I have to take turns staying home with Garrett or attending Little League games. It isn’t fair, but neither is life. I already know that my poor decisions today will employ a shrink twenty years from now, but I hope my awesome oatmeal cookies will keep a tether to my sons.

Although this is not the life we had planned, we are still going strong despite the extra stress of medical bills, sleep deprivation and a decade and a half of Barney videos. Did you catch that? Fifteen years. Of the purple dinosaur. We do not see an end in sight.

Laughter helps. But the cure is in the coffee.

taleS froM the trencheS