Category Archives: PWS

Putting in on the line…

Okay, all joking aside — here is the real deal…. Why am I running in this marathon? Mama needs a win. That probably doesn’t make a lot of sense to you, but it means everything to me. The last two-and-a-half … Continue reading

Posted in Postcards from Holland, PWS, Running | 4 Comments

My Story, pt. 3 — the one with Mr. T

and now, the shocking conclusion!…. But things weren’t all normal.  Hope never cried.  One of the quirks of Prader Willi.  When she finally had the traditional “1st Birthday Party Meltdown” it was the first time that most of the family … Continue reading

Posted in Postcards from Holland, PWS, Scrapbook | Tagged | 2 Comments

My Story, pt. 2: The Empire Strikes Back

the saga continues… The “New” Normal (p.s., I still hate this phrase and will slap you if you use it around me) But at least we got to go home.  Two days later, after they showed us how to insert … Continue reading

Posted in PWS, Scrapbook | Tagged , , , | 2 Comments

My Story, pt. 1

So…I think I’ve mentioned before that I am a part of a “speaker’s bureau” of sorts comprised of parents of children with disabilities.  A few weeks ago I was asked to tell my story as part of the annual training … Continue reading

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The Long Run

Long runs are hard.  You just kind of have to keep plodding along, trusting that if you just keep moving forward, you’ll end up at that place where it will all be worth it.

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Hello again…again

Well hello there, big vast chasm of the internets.  It’s been a while.  You look well.  Congratulations for getting Betty White on SNL.  Have you lost weight? I feel a little guilty for not updating the blog more than…well…quarterly.  I’m … Continue reading

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Get in Gear for Hope

As you may (or may not) know, Tammy is an avid cyclist and within days of getting our PWS diagnosis for Hope we were already talking about maybe someday organizing a bike race or something to raise awareness for Prader-Willi … Continue reading

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