Wednesday, July 28, 2010

Thick skin

I have read that being the Parent of a child with Special Needs means you either become a hermit or develop thick skin.  I admit that the girls and I have been keeping a low-key profile for the past several months and staying home a lot.  Part of that is the planning and coordination that it takes to get 2 young children out of the house and go somewhere, especially considering that every thing is a 30 minute drive from our house.  The other part of that is not knowing how to cope with the pity glances from other people.  I don't blame them as I am sure they are more curious than anything considering that Reagan's diagnosis is not one that can be easily figured out from her appearance.  She can appear to be a typical 2 year old, until you notice the arm braces that stop her from mouthing and also realize that she can speak no words back to you when you say, "hi, what's your  name."

Lately, however, I have been trying to take them to more playdates, or just to the store to do a little shopping.  Sometimes things go as planned and I leave feeling confident and reassured that we can live a "normal" life outside of Rett Syndrome.  And then there are other times.  Like today when we joined some friends at an indoor inflatable gym.  I have to first push down my pain of seeing other children run around and play, laughing and giggling.  I am getting really good at disguising those feelings.  But, if one thing goes wrong and reminds me of the painful journey of Rett Syndrome, the floodgates of tears just might open.  Reagan did not enjoy being there today and made it obvious.  Yes, she is still a 2 year old and I hear from parents of typical children it can be a difficult age.  Nonetheless, the playdate today was a big fat fail.  I am hoping that Reagan was just having an off day and we can attempt it some time in the near future again.

9 comments:

  1. Hey Hon ~ I saw you walking out but was stuck in one of the inflatables. Sorry, it was so rough and we had no time together ~ to be honest Savannah was never herself today either; so let's blame the "rainy weather".
    Big Hugs!!

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  2. Our outings are so unpredictable too. Swings at a park might be so fun today and cause an absolute meltdown the next. Hope the next trip is better for both of you!

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  3. Dawn, sorry to hear that you had a tough day. I wish I could tell you it gets easier. But today I was a bawling fool because the only places we do go on outings to are therapy appointments. I don't even try to take her to the park. We have learned the art of play at our house and Chloe and Claire are content to stay home and play dress up 99% of the time. Hope tomorrow goes better. xx

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  4. sorry you had a rough day! :-(

    (((((( hugs )))))))

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  5. i second what colleen said-at least you are taking her places. tomorrow is a pool date for me and aves and it gives me equal parts strength and fear just thinking about it.
    i know the pushing the pain down feeling. man.

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  6. Right there with you! Play dates are hard and unpredictable for us too! I have left places in tears more times than I can count. Hugs!!!!

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  7. **hugs** Sorry the playdate was so hard and best wishes for the next one.

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  8. Sorry to hear that. Maybe it'll help if I tell you it's difficult for us too? It's not easy for us to do much with Grant either, since he's a total energy ball and many places are not Grant -proofed enough for us. Curtis & Grant attempted to meet us at the rodeo in Mesquite this weekend. Grant wanted no part of that, so they had to go home. Grant cried the whole time. He didn't even let me hold him, so we both cried. :( I hope your next outing goes better.

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