Category Archives: feeling different

What Does Impulsive Look Like?

"Dad, honest I did not pick up your nasal hair trimmer to attack my eyebrow."
“Dad, honest I did not pick up your nasal hair trimmer to attack my eyebrow.”

​In 36 hours, my son took scissors at school and cut his hair really close to the scalp, tested his scissors that he took home on his pillow case, and tried out my nasal hair trimmer on his eyebrow. It is funny to me when colleagues at work tell me about the trouble their children invent. It makes me realize it is not that my kids do unusual things to find their way through the world. It is that they do so many, so often, and in such rapid fire ways. So my colleagues sometimes look at me like I have some sort of antidote because my kids still live despite having made crazy decisions. If I had that power, do you think my kids would still be making and remaking the same decisions? I mean O has now nut his hair to the scalp three times now at ages 3, 6, and now 8. It’s a good thing he looks good with a shaved head.

This same impulsive behavior that often makes me feel as if my hair is falling out when O is hyper every night at 7:30 to 9, also leads to some very touching, heart felt moments of empathy. Last week after talking about how A could only eat peanut butter sandwiches every day because we had to limit her food, O decided that was all he would make himself for lunch. That way A would not feel alone in not being allowed to have different lunches like her friends have. I think these moments are golden.

I just wish we had a few less moments like last night when O came home from a birthday party A left because she didn’t want to watch everyone else eat pizza and cake. O came home and said, “A, you should have been there. We had pizza and great cake! It was awesome.” I think the head-slap emoticon was meant for those moments.

I wonder how many more generations will enjoy newspaper comics.  I love seeing my kids read for fun.
I wonder how many more generations will enjoy newspaper comics. I love seeing my kids read for fun.

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Miracles Abound, But We Probably Miss Them

If you need to be this close to the TV to see it, you just might be legally blind.  K is, but if she is this close she enjoys watching races.
If you need to be this close to the TV to see it, you just might be legally blind. K is, but if she is this close she enjoys watching races.

Recently, my daughter was made fun of at school and began to feel awkward having a water bottle with her in class. “Dad, when will I be able to stop drinking water during class?  It’s bad enough I fart, but I feel them all looking at me when I drink.” The perils of second grade can be hell on emotional well being.

I told her to remember she is a miracle. She has lived through more than most of them ever will. She needs to remember she has lived through 4 or 5 (depending on how some exploration is counted) heart surgeries to deal with her pulmonary atresia, and she had a stroke. She has been sick enough to die multiple times. She has the scars to prove her courage and toughness.  What’s more, she has bowels which aren’t moving food like they should. So she has a choice, either take the chance given to her by multiple miracles and drink the water or let the stupid things thought by 2nd graders rob her of the life she is lucky enough to live.  I told her she is given a chance so many would love to have, but it’s her resilience which will make the rest of us look to her for inspiration.  Then I had to explain “resilience.”

The irony is I ask her to be tougher than I am all the time. I tell her she and her siblings are my miracle, keeping me alive. We called the school to make sure the teacher is aware what is going on and how dangerous it would be for somebody with her heart condition to become dehydrated. We are debating as she enters a new school after our move next fall whether to schedule a class with her new school to explain disabilities and hers in particular.

It is hard to mention people’s lack of ability to see what others go through without pictures of K.  Of course I find it hard to mention “not seeing” without pictures of her.  There is hard to define justice in the joy I take from “looking” at her looking at the world around her.  I wonder what and how much she sees.  Then I marvel at the speed she chooses to live with reckless abandon.

"OK I see a change in the ground.  I don't know how far, but lets jump."
“OK I see a change in the ground. I don’t know how far, but lets jump.”

On a somewhat related but funny vein, O’s class must have had somebody mention Nazis.  He said he was thinking about them again when he heard about them in the Sound of Music.  Then on Saturday morning, he said, “Dad, I think I know why they were called ‘Nazi.’  I think they could not see the goodness in different people.”  I told him he can be very insightful at times, and I was glad for a morning of the thoughtful O (leaving out the “instead of the grumpy O who usually graces us in the morning”).

Cinco de Mayo, Boy Scout style.
Cinco de Mayo, Boy Scout style.
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