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Yesterday, Abel and I stopped at a Museum's Kids Day while exploring the city with new friends. The older kids were coloring and playing with gadgets. Abel was excitedly doing his little jig-skip-step that we both think is so funny. A woman working there was watching and asked me how old Abel was.  I happily replied "a year and a half!" while I struggled to help him stand up and not drop my purse.   The woman followed me another step and paused.  Than she blurted out, "He has Downs Syndrome?"
   
There are a hundred things that I should have said . . . "No." was the only one that I could get out.  I was so proud of Abel for trying to push the fog horn just like the big kids, for making the old man on the train laugh, for pointing at all the things I was talking to him about as we walked to meet our friends.  She stole all those little victories from me.  I did not see this one coming.   I cling to Abel's personality and cognitive development like a life raft.  To have someone attack that part of him-that miraculously unique, amazing, brilliant, part of him- was a low blow.  The month before, it was at a coffee shop.  The lady in line behind us stared at Abel for a while and than asked if he was a preemie.  Startled, I said "no." and turned away. Unconvinced she started to point out why she asked and all I could do was just walk away.

I try to be prepared for people to ask why he doesn't walk, why he cannot sit up, why his head is always tilted . . .  I see people look at him, trying to place what is different.  Several times a day someone or another says "Oh my goodness! He looks tired!!" I know they mean well but it still stings. What am I suppose to say?  So, I agree and walk away.  I can't say, "no, he is not tired.  He was injured at his birth and that caused brain damage that has affected his ability to control his muscles and left him with a lifelong disability.  Thank you, we were having such a good time that I had almost forgotten about that horrific event."  No, I don't say that because it would be rude . . .

People are drawn to Abel.  I hope they always will be. I like to think it is not only because of a disability but that they too see that he has a strong and beautiful spirit. I want to use these moments to educate others and prevent them from causing someone else additional pain.  For now, all I can manage to do is walk away.  I hope I can learn to be a better example for Abel. In the meantime, please remember that when you are pointing out the lack in others, it is pointing out the lack in you.


Caroline
10/18/2011 02:08:35 am

Abel is one of the most beautiful kids I know! He always find the fun and good in others. He makes me smile every time we meet! People don't think before they speak and I'm sorry that causes you pain. LoveLoveLove

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Connie
10/24/2011 04:04:57 pm

Im sorry you have to go through that daily! I can relate, my daughter was born with a tumor on her face, daily people would stop me and ask if she fell or what was wrong with her. Its mentally exhausting. She was treated at Doernbeckers for a year and is doing well, now I look back at the photos of her and to me she was so beautiful, perfect in every way! Keep strenght in knowing he is an amazing little guy and full of love!

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12/10/2011 03:54:46 pm

It is very mentally exhausting Connie. It is nice to know someone understands. I am glad your daughter is doing well and I am sure she is absolutely beautiful in every way!

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