"taleS froM the trencheS

National Guard wife blogging about her adventures with three sons and the unexpected joys of Smith-Magenis Syndrome (SMS)
....um, yes. They are tears of joy. Really.








Our Squad

Our Squad

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....

Wednesday, August 25, 2010

You Know You Are a SMS Parent...



…if you roll your eyes at a mother whining about her baby’s nighttime feedings.

…when you spend all day cleaning and your house is still a mess.

…if you plan your vacations (or holidays!) around the location of other SMS families.

…when you snort loudly at a father grumbling that a storm woke his child during the night.

…if your conversations contain more acronyms than a military SOP.

…when you kick yourself for not inventing Clorox bleach wipes.

…if you roll your eyes and snort loudly at a mother complaining about how long her teething baby cried.

…when you find yourself using sign language and you are not driving in rush hour traffic.

…if most of your friends are your child’s former teachers, aides, bus drivers and therapists.

…when you never leave home without a Plan B, or Plan C; and sometimes even a Plan D.

…if you roll your eyes, snort loudly and shake your head at a father moaning about his child’s bad dream waking up the household.

…when you have watched three generations of Barney kids grow up.

…if you know that white vinegar gets “the smell’’ out of clothes, carpeting and pretty much everything. And you really, really love white vinegar.

…when you have locks on your refrigerator and pantry doors, but you are not on a diet.

…if your retirement plans include three, not two.

…when you have completed more home repairs than Bob Vila.

…if you funded a Christmas with Huggie points, remember when Barney’s picture was not on Luvs and were the first to try Pampers cruisers because you have been buying diapers for more than a decade.

And, finally, you know you are a Smith-Magenis Syndrome parent when you roll your eyes, snort loudly, shake your head and start a tirade at parents who have the audacity to insinuate that they have any idea what it feels like to be tired!
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