Michael Warechowski IV

Updates on our sweet Michael

How do I tell strangers?

on May 10, 2012

I took Michael to get his hair cut today. He acted the way he usually does – he’s one of those kids that cries the whole time, reaching for mommy. But we got it done and he looks super cute.

So after being strapped into the salon chair for 20 minutes, Michael was ready for some freedom. He wanted to stand all by himself and hold on to the bench at the front of the salon. When the hair dresser noticed he wasn’t walking on his own she said, “so, he’s trying to walk, huh? Do you think his bones just aren’t strong enough yet?” My response was, “No, he has a disorder and this is the best he’ll ever walk.” She looked at me like I was a crazy, negative person who had lost hope in her child. “Oh, he’ll walk soon! I’m sure of it! Don’t say that,” she said. I was caught thinking, what do I say? Do I spill all the details? Make up something? All I said was, “he has a disorder called Metachromatic Leukodystrophy and life expectancy is only about 5-10 yrs. He will get only get worse.” And of course, the hair dresser looked at me in complete surprise. It was definitely an awkward moment.

I left feeling like I should have explained it differently but after much thought, I realize I don’t need to explain anything to anyone. Just smile and nod, smile and nod.

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4 responses to “How do I tell strangers?

  1. Honestly, I think you just keep the conversation positive and smile. Don’t bother on details. Details are a bonus for a good friend who really cares. Giving good energy outward —and it will invite good energy into your world. Karma! I think this is an opportunity to spread the word on “proper etiquette for ways to talk about stranger’s children.” Let’s spread the word!

  2. Ashley Evans says:

    I would imagine each day you would feel different. Maybe sometimes you want to educate and explain every last detail and other days you may just want to get out of there….just remember you don’t owe anyone anything. If you explain it or don’t explain it, nobody will truly understand what your family is going through…..

  3. At least she learned something by what you said. Maybe, like most, she had no idea of the disease and I can hope she looked it up on break or when she got home. You can’t educate everyone, but one person might make all the difference.

  4. Jessica says:

    My uncle (in-law) suffers from Alzheimer’s and his wife carries business cards that she can give to others when she feels it’s necessary based on something he might say or do. Perhaps a card with the name of the disease and a link to more information could raise awareness without you having to spend your precious Michael time explaining to a stranger. I’m sorry she acted the way that she did–insisting that you were the one that needed to believe–but I think you handled it very well and if you had it all to do over, I’d respond the same way, if I were you. I think of your family often and wish you joy and strength. (By the way, to introduce myself, my name is Jessica Sanders, formally Moran, and I grew up next door to Adam Hughes who posted about a tennis tournament put on by Heather Dinsmore.)

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