The beginning of the year at Erin’s school involves some testing to provide a reference point for progress. When we read over the writing test instructions, we saw that this year she was going to have to write not one, but three stories, all complete with setting, plot, characters, etc. We hadn’t really allowed that much time for it and Erin knew it. To complete this, we were going to have to delay an outing that she was looking forward to.

She said, “Mom, That totally sucks!”

I did like my computer does occasionally and went into freeze mode. Instead of reacting disapprovingly to borderline language in a 10-year-old, it was all I could do not to break out in hysterical laughter. This child had spent the summer in camp surrounded by kids who undoubtedly used language worse than this and she had picked this up somewhere along the way. I saw out of the corner of my eye that she was casting sly glances my way to see how I would react to this new vocabulary.

If it had been Kristen at this age, I would have given her the speech about finding better words, but with Erin, I was just so happy that she could extract language from other people’s conversations, especially slang, and use it appropriately. I managed to keep a straight face, but it took every bit of self-control I had that day, along with a little bit borrowed from the next!

Here’s a similar story from Stephanie Arnold (used with her permission)…


Got to tell you a quick story….this morning Jake was eating his
breakfast and he made a total, complete mess of his banana. The banana was
squished all over the place, all over the high-chair, all over his
jammies, in his hair – EVERYWHERE. Talk about my reaction being completely
different than what it would have been with Morgan. I would have
killed her for doing something like that – saying things like no, no – we
don’t play with our food, we eat it. With Jake I was like, all look Jake
is playing with his banana 🙂 PWS makes us demented!!!!

Here’s the thing….Our kids are NORMAL….that’s the “N” word for us. The difference is that PWS makes their bodies work in atypical ways. That’s a small shift that makes a MAJOR difference in our perspective. Even we as parents can be so thrown off balance by this diagnosis that we see our own children as being less than they really are. Let’s be very sure that WE set the standard for everyone else in their lives to treat them by. Accept nothing less.

Our priorities are different and our schedules and finances reflect that, but let’s remember that in all the ways that really matter, we are, and our children are, just like everybody else. We ALL need to love and be loved, feel safe, be happy and productive, look forward to the future and treasure a past full of memories. We hurt and we cry, we regret and we anticipate, we laugh and we mourn–just like everybody else.

Friends, we have NORMAL children who are living with bodies that work differently. We are NORMAL families living lives that have been complicated by PWS. That doesn’t make things easy, doesn’t take away all our worries, doesn’t reduce our work load, and doesn’t allow us to neglect necessary treatment, but it does remind us that, at our core, where it really matters, we share the same characteriestics as all that are, all that have ever been, and all that will be. We are all children of God, created to be loved and treasured. That alone defines us and, in its essence, defines what it means to be “normal.”

with so much pride in a certain normal, sassy, 10-year-old, who happens to have PWS

P.S. She will eventually get the speech about using better words, just not this time! 🙂

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