It happened twice in one week- which was strange because it had never happened before. We are used to the double takes or long stares as people walk by (Ben usually just waves,) we are used to kids asking “why is that on his neck?” and of course, I know they look different. But still….
I was sitting watching Jack’s indoor soccer game so I kept looking back to check on Ben and Ty and I saw them talking really animatedly to a boy. I snapped a couple pics as always before going over, (no one looked upset, I was just curious about what was being talked about so intensely!)
The little boy was almost yelling as I walked over “they are SO creepy!!!” He had obviously never seen a trach before and couldn’t believe there was a HOLE in their necks! Of course I could understand his reaction, still I went into total DEFENSE mode. How were Ben and Ty feeling about this?? But Ty said “Mom he said we are creepy, but I told him we’re NOT, we just have trach-ses to help us breathe.” Ty was so matter of fact- even pointing his finger as you can see from the blown up grainy photo.
They are so used to their trachs that they even make sure to add them to their self portraits. To them it seemed strange that this boy was being so crazy about it. I was so proud of them, and soon they were running around playing with that
misbehaving rude boy (ok chill out mama bear) new friend but it made me wonder what will it be like as they get older? And it reminded me of what they may look like to those who don’t know them.
I love their sweet faces so much but I’m the mom. Sometimes when they are sleeping or make a certain expression I’ll think “OH! That must be what you would’ve looked like!” or my heart strings twang as I watch Ben trying to hold his lips with his fingers to help me better understand what he is saying. But I have NEVER thought they looked creepy so it broke my heart a little to hear one of their peers tell them that. And then it happened AGAIN a couple days later! Sheesh!! What’s the lesson here? (exasperated face emoticon)
We were at Target and a girl came right up and just said “they are creepy!” to her sister. Hmmmmm. She said it right in front of them and I didn’t want to project my feelings onto the boys so I said in a nice voice “no, they aren’t creepy, that just helps them breathe.” Thank goodness I didn’t over react! Her Dad came up just then and said “I’m sorry, she is autistic” and was so nice. I never would have known just looking at his daughter and I could tell he has had his share of difficult conversations. Maybe that was the lesson- everyone has something. And my somethings are pretty wonderful.
Love a good selfie and yes, I bought them shirts that say “The SPECIAL has arrived” 🙂
Ok- maybe this photo IS a little Ernie and Bert creepy but it makes me laugh EVERYTIME I look at it. Such love!
Rocking out at the Primary Talent Show, they really think “everything is awesome.” (Costume design by Natalie)
In the photo below Ben’s crocked little fingers are listing 3 important things he needs to tell me “one- I love you, two- can Jack give me a controller, three- what are we going to do today?”
I’m grateful they know they aren’t creepy.
I’m sorry for the times I may have thought someone else was creepy.