Since watching this movie that displayed the diverse musical talents of individuals with learning disabilities (http://4onceinmylife.com/proyecto/), I've thought a lot about the Double H talent show. Consequently, I've also thought a lot about Double H.
I've realized that I have a lot of stories. A lot. Here are a few.
"Without patience, we will learn less in life. We will see less. We will feel less. We will hear less. Ironically, rush and more usually mean less."
It's 7pm and everyone's headed to the talent show except us. We're staying in the cabin because you don't like flashing lights and loud noises. They give you seizures. Sometimes they last for minutes. That's why you cannot speak, why you have trouble comprehending, why we spend a lot of our time on the playground sorting wood chips instead.
Here we are. We've found that watching one of the videos that your mom left us is the only way that you'll take meds...it's your routine. So we watch barney. Again.
The cabin phone is not working and I am afraid that you'll have another seizure, and I'll have no way to make the doctor call if it lasts more then 1 minute. But, when Renae stops in, I tell her that we're fine, and we are.
I put you in your bed on all fours and run behind the door. You peek over the edge. I play a game that I used to play with my cousins when they were babies. I pop up from various places making animal noises: the room door, the foot of your bed, behind the dresser. You throw your face into your pillow and laugh. Sometimes you utter your one word statements "frog" and "cow."
At the end, when I do a snake on the side of your bed. Your tiny arms extend and wrap around my neck. You say the first two-word combination that I've heard you say all week: "so silly." Suddenly it doesn't matter that you've spoken my language. I knew that already, because I've learned yours.
I've learned that you can't speak, but you can love, and that, Tessa, is all that matters.
"Everytime you smile at someone, it is an action of love, a gift to that person, a beautiful thing."
"The biggest disease today is not leprosy or tuberculosis, but rather the feeling of being unwanted."
"I think I am going to take this as a learnin' ex-peer-ee-ance :pause: I hate team adventure" (the 'sports' free choice) you say. Just like with any other statement that comes out of your mouth, I am bent over laughing. I get it though. You're 15, and the only girl to sign up for TA free choice. The boys don't believe that we can catch, and so they don't throw us the ball. It doesn't matter though...you're one of the superstars. One of the ones we hear stories about in orientation. One of the ones who embodies camp and the Double H spirit.
Later, I pop into your room with a pillow and blanket, proclaiming that we're going to have a sleepover. You peer over the footboard like a wide-eyed mouse. Two others girls are in your room. Because we're concerned about your safety tonight, we're following protocol and having a counselor around at all times. Tomorrow, you'll chat with Dr. Gerry and see what he can do to make it better.
After 20 minutes of talkingchattinglaughing, I tell you all to go to sleep. I lay awake. For the first time I realize that most of the kids who are legends here, like you, are not legends in their own communities. Like Colby, one of my favorite kids. He has no arms. He's so funny. He sang "don't laugh at me" at the talent show. People back home don't always look beyond the wheelchair or leg braces or diagnoses to get to know you. I realize that it must be terrible and beautiful to know that you're so well-loved here, and to know that it's not you, but to have no one back home see that. Experience that.
I pray.
"If you judge people, you have no time to love them."
Many people you look at you and see someone different than the person that I see. Who you appear to be is not who you are. I learned that. You were 15 and tough. I knew that from seeing you the year before. I guess having survived strokes and acute chest syndrome and dealing with horrific pain and iffy social support made you that way. Rough around the edges. Defiant. Combative. Defensive. It's adaptive for you where you're from. But really you reminded me that everyone has a story, everyone is the way he or she is for a reason-and that even the toughest 15 year-old's have a child inside.
I loved learning that. I loved spending those hours with you in the Body Shop, turning syringes into squirt guns and syringe people, a face mask into a cat face, and soggy paper towels into an epic game. We had a walking dream time inside that 12'x12' hospital room.
Lina came down to tag me out after 5 hours. Then Pat relieved her. Then Padrick. When you had to leave on the second day of camp, though, it was me that you had radioed down to see you off.
The truth is, I had heard counselors talk about you. I saw you, disinterested and aloof. As hard as I try to override those things, I did judge you. I was expecting someone different. I was wary at first. I'm just thankful that you reminded me why that's wrong. I'm glad that I got to learn that about you. And, just so you know, YOU are one of the biggest reasons why I want to research sickle cell disease.
P.S. I have a soft spot for you remembering my '08 tactics for getting you all to go to bed :)
"Spread the love of God through your life but only use words when necessary."
So many of our kids do that with their lives. 99% of the time Double H is just pure joy like you've never experienced it. It's a place where the love you have seeps into your actions. It's insane how deeply they live life. They know what it's like to be "different" and not included, so they make a point to do better. You'll never really see a place like it.
"Let us touch the dying, the poor, the lonely and the unwanted according to the graces we have received and let us not be ashamed or slow to do the humble work."
I'm so lucky that I got to spend two summers doing that: making a difference, and letting other kids make a difference in my life. And some of our work was humbling. Those were some of my favorite moments, though. They're opportunities to turn something not fun into a total blast. I'm so lucky that I've found a path where I can do that for the rest of my life. I like being there in the pain and process--because see, when you're there in the pain, you cherish the triumph.
It eventually always happens in some way, shape or form. The child whose hand you held through a sickle cell crisis gets up on stage for the talent show, or the boy who's always told that he can't do something uses his arms to climb the cargo net on the ropes course.
"If we have no peace, it is because we have forgotten that we belong to each other."
The end.
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