Later this year, Special Education Today magazine will do a cover story about our amazing Suzie. You can't tell from this horrible photo, but we did the photo shoot for the story this afternoon. Lots of smiles from Suzie (and her sisters...)
Here is a bit of the article...
...I remember praying by her bedside during one of those brief visits to the PICU. I think it was on day three or four of our stay. At this point a life support machine was breathing for her; a feeding tube was keeping her nourished; her little tiny arms and legs were surrounded by the tubes and IV’s; and a raft of different monitors were playing sentinel to everything going on in her body and brain. And at this moment, in the midst of all the craziness, I must confess that I was not able to pray for much. I was not strong enough to pray for healing or wholeness. I was not confident enough to pray that she would be restored or renewed. All I could utter at this point was a very feeble “God, give her joy in her life. That’s it. Just joy. That is all I can pray right now.”
And that prayer, from the bottom of the most desperate place I have ever been, is the prayer that is answered every day of her life, starting right there in the hospital...
We were out in front of the house the other night. The girls were playing with a couple of kids from around the neighborhood. Most of the kids I knew, but one was knew to the AtwoodZoo.
In the middle of a game they were playing, the new kid just blurted out "I am SO retarded."
The laser-intensity in the looks that Kenzo and Mabel gave the new kid could have melted steel. Suzie was unaware. The Beautiful Bride and I cringed.
The game went on.
It reminded me of something I had written here a few months ago...
Heard someone use the "R" word again. And I suppose I am more than a bit sensitive to it, as the dad of an amazing, darling "retarded" ten-year-old daughter.
The "R" word. It seems cool, so flip, so easy to just bounce off the tongue to make light of a mistake or forgetfulness or error. But as I think about it a bit more, "retarded" is an adjective describing a condition in a person, not describing the person. For example, we could say that "he is a man who is mentally retarded," or "she has mental retardation." Not "she is retarded."
It may seem like I am splitting hairs here, but I wonder how come people don't adopt sayings in a similar way if they don't happen to feel well. Just as they say "I am so retarded" when they do something wrong or make a silly error maybe we could encourage people, when they don't feel well, to say things like :
I am SO cancerous.
I am so AIDS.
I am SO Sudden Infant Death Syndrome.
Seems amazingly paradoxical to me that it is (appropriately) offensive to make light of physical conditions, but to many it is downright funny or just socially cool to make light of an intellectual condition.
I was talking with a friend yesterday about traveling with the girls. It was a nice enough conversation, but frankly, he just doesn't get it. Because he has a family with only boys. Well, except for his wife. But I was talking about the challenges of traveling with a gaggle of girls. And they are many.
But the key challenge seems to be in the constant need for a bathroom break. This whole issue came to a head on our last trip. And really this on-going call to go potty helped me define our family core values.
I know that companies have core values, and other organizations, and churches, and most every group across the country. But we, at the AtwoodZoo, have never articulated a set of core values. But in a 30-second car conversation with the very bladderly-challenged Mabel, all became crystal clear.
The conversation went something like this.
Mabel Dad, how far to the hotel?
Dad About five minutes I think...
Tick, tock, tick tock....
Mabel (with great squirming) How far now?
Dad About five seconds less than five minutes.
Mabel I really need to go.
Dad Mabel honey, I know...but we are in the middle of rush-hour traffic in Atlanta, surrounded by a zillion cars. There is no where for me to stop.
Mabel But I need for you to stop right now. I have to go so bad.
Dad Mabel, I can't stop. What can I do? Stop the car in the middle of traffic and let you hop out and go potty in the middle of the road with all the cars around.
Then it hit me. I had just identified one of The AtwoodZoo core values.
And as part of the on-going commitment to public service, I offer up the AtwoodZoo Core Values. Feel free to use with your family. I wanted to keep it simple so I have distilled down to three key points.
Love your family and friends.
No public urination
So there it is, in a nutshell, the glue that holds the AtwoodZoo together. Who knew that Mabel drinking too much at the World of Coke would lead to such a profound revelation.
Today was ...cue the dramatic music please...REPORT CARD DAY.
Fact is, knock on wood, this has been a pretty uneventful day at the AtwoodZoo for the past couple of years. Both Kenzo and Mabel work hard, are involved, and more often than not get high marks. (Suzie has a different approach to grading...which is alright because she has a different approach to life.)
This time through we saw all A's and E's.
The only area the girls got marked down on was "penmanship" and "working quietly."
What does the Bible say...something about the "sons of the fathers coming down on their children." These were two of the "challenges" The Beautiful Bride and I had in school so at least they come by their sloppy writing and chattiness honestly. (just for the record...I was the one who got low marks in penmanship. You can make your own assumptions about the 'works quietly...')
As I was putting Kenzo down the other night, after going through the 'who wants to pray first...' routine and the 'tell me about when you were a kid' walk down memory lane, I was ready to call it a night. I was tired. I wanted to see the last few minutes of the Predators game and I wanted to lay down on the couch for a few minutes before falling asleep.
She wanted one more story...
"Daddy, tell me just one more thing about when you were a kid."
"Kenzo, that's enough. it's late. Good night.
"But Daddy...just one more....please."
"No Kenz, you need to get some sleep."
"But Daddy...spoil me...just one more...."
This was not a 'buy me a new book' or 'let's get ice-cream' or 'please do not punish me for....' kind of of 'spoil me.' This was just a request for time. That's all, just a few more minutes of my time.
Because that is the currency of love for Kenzo (and all kids...)
It is a simple equation.
Time = Love
Kenzo did not want something extravagant, or ridiculous, or wasteful. She wanted another five minutes at the end of the day. She wanted another five minutes that was hers and hers alone.