Wednesday, October 17, 2007
Having a child with a disability means different things to different people. Just as having any child at all does. For the most part, it feels like our family is fairly well equipped to not only handle having Rubinstein-Taybi Syndrome in our lives, but I also believe that we have, and will continue to ensure an environment where both our daughters can be the happy, healthy, loving girls they were meant to be since before time began. Not that we don't second guess ourselves, but we we fall back on fundamental trust in our parenting instincts. What most dreams for our kids boil down to is that we want them to have a positive impact on the world - we want them to change something. Both our kids have fulfilled that dream for us in a variety of ways. My husband and I are like eager moviegoers who already found the opening credits surprisingly delightful - we sit nodding with reason to believe this is gonna be good. What is most exciting is having no clue what happens next, what other moments of delight will be strung together before the culmination. We're not even trying to guess. Normal, typical, predictable are things that we've never held closely, never clung to as values.
That's all a disclaimer for the tale I'm to tell here. I tell it through a headache and cheeks still stiff from dried tears. Many parents of children with disabilities who have developed healthy perspective over time will not hesitate to admit that there are certain things, certain seemingly unimportant things, that shove them over that cliff into an ultimately manageable, but scary sea of feeling cheated, feeling injustice either for their special child or for their family as a whole or for themselves. But they do have that healthy perspective to use as a personal flotation device, if needed. There is always a trust that feet will find higher ground again, so these deep end drops are accepted from time to time.
Today I lost my footing and fell over just such a cliff into just such salty water.
Addie goes to 2 schools. On Monday and Wednesday she is in the early childhood special education program with one or 2 other kids, depending on the day. On Tuesday and Thursday, she goes to a regular preschool class with about 16 kids - mostly of typical abilities and some not-so-typical. The Tuesday and Thursday school had their picture day today. Since she's not scheduled to be there on Wednesday, we had to make a special trip to get her photo taken before her other school started.
I prepared for this: she bathed and smelled good for the camera (?), I picked out a snappy outfit, I did her hair in a way that generally gets her a nice helping of attention and compliments (can a mother say her daughter has gorgeous hair and be believed? Or does an unbiased 3rd party need to be the judge?). Still, we were running late. It was a rushed morning where I had no time to think of anything but the concrete necessities - backpacks, jackets, change of clothes for school after the picture. My 3rd grader had a late start day at school, so Cate came with us.
Addie was confused when we got to the school, which I'd anticipated. I showed her my camera and told her that we were going to take photos and then go to the Wednesday school. She happily played in the very familiar gym while we waited for her turn.
Addie's name was called. I carried her to the lights and the backdrop screen. I could immediately feel her tighten every single low-toned muscle in her body. She was telling me and only me "No, mom, this is not what you said would happen. You showed me your camera. This place has screens, big lights, strange people and a huge camera." My response overestimated my own abilities and underestimated Addie: I signed and talked to her, told her what each thing was, showed her the sample photos from the order form and then, thinking I had done my job, went to plop her on the pose chair.
Here's a fine example of not heeding my own advice - to teachers, therapists, babysitters, etc. I tell them the surest way to get her not to do something is to manhandle her instead of talk with her about it. Despite the fact that she is nonverbal, she still appreciates a 'say' in things, like most 4 year olds. If you want her to go to the door, all you have to do is ask her to sign door and then she feels like it was her idea and happily complies. But no, I broke my own rule and tried to plop her.
The wobbly rock on the bluff gave way. In slow motion I fell headfirst into the sea. Just a second before plop completion, Addie's legs and back arched so that her sister could have used her as a hula hoop. The chair flung backwards. She was not concerned with my ability to hold her, falling or injury to anyone. She accompanied her contortion with howl to make her message clear to the general population "I will not have my picture taken by you people today."
But I wanted this picture. Cate's school photos came back last week and they are beautiful. Addie has not had her photo taken professionally since she was 6 months old. I wanted to give the grandmas the gift you give grandmas for the holidays: the hinged 5x7 double frame with my 2 girls and their goofy fake smiles, smiles that belie the pre-flash facts: a grown-up stranger is acting silly so I'll smile, but I'm slightly embarrassed by it, so including my bottom teeth in this smile is throwing a bone to this photographer. When you see these pictures on the mantel you can almost smell graphite and tempera paints, you can hear lockers opening and closing and you can feel the click of a ring binder... The photo says "I am a contributing member of a community called school. Just like you were."
I didn't even know I wanted this photo so much. It's only now that I realize it. But parts of me were very aware of this desire or I would have said forget it. Not worth it. No. I was willing to put us through more than I am usually willing to do. I didn't cut our losses. I sang, I coaxed, I signed. I jumped up and down, I ordered Cate around, telling her to stand here and do this or that in the hopes that Addie would train a sweet grin on her sister. But I did not do any of this in a hopeful, jolly way. I had already given up - her body told me first thing that there would be no photo today. I knew this, but I cajoled in a desperate way - shaky in the voice, too blunt with my movements, like a spoiled child that realizes they won't get what they want, but cannot stop demanding it. If it were possible to measure Addie's understanding and connection to her mother's mindset, the word we hear so often in her evaluation results - delayed - would be replaced with advanced or acute or gifted. Knowing that mom didn't think it would happen strengthened Addie's resolve to ensure it did not. She walked away, she pushed the props away, she wriggled, all while I continued to try to catch mercury.
I was sweating and huffing when I glimpsed another family or 2 come in. At that point the photographer held up the tiny display screen on her camera to show me a dark photo. It was the outline of Addie looking down with a frown on her face. The photographer raised her eyebrows hopefully, "How's that? That's cute, isn't it?" Ah. Ok. I get the picture. We'll go.
With tears roiling in the back of my throat, beginning their trip up north, I averted my eyes and quietly answered the photographer's question by telling her that if there were any that she would have been proud of, go ahead and make proofs, but if none of them meet her standards, don't even create an ordering package for me.
I brusquely ushered Cate and Addie out of the gym, past the families with combed and pressed preschoolers - I could see their mantel photos for grandma in little bubbles over their heads. When we passed the lobby of the school and the air from outside hit my face, the tears found their freedom. As I struggled to keep them in and began to blame myself for getting upset and unreasonable in front of my girls, the despair found a new dimension and a quiet, but telltale sob started in my throat.
We got to the car and Cate was already crying. She's a crier, that one. Wonder where she gets it. I quickly tried to explain that I understand that it's no big deal that we didn't get a photo, but that I just was gonna be disappointed about it for a few minutes and then move on. I didn't tell her that I was wondering if we'd ever get that mantel photo for grandma. She would not have understood - how can you be ok with Addie not being able speak, to say I love you, but lack of a school photo sends you to the depths? I can't tell her that a dream isn't always grand, that sometimes it's simple and small, but cuts you just as deep, sometimes deeper, when it eludes you. She wouldn't get that, would she?
From the backseat, Cate wiped her eyes and sheepishly ventured, "Mom, you took some pictures of me and Ad in her pretty dress this morning before we went. Good thing you did that - you have to be thankful for what you have. Anyways, you're the only one that can take the photos of us that show how we really are."
My next sob was caught and remade into something like a laugh. I tipped the rear view mirror to frame the sisters in their car seats. "And how is that, honey?"
"Cute and pretty and messy and loud and happy and proud."
I'm still holding on to Cate's floaty now that everyone is at school. Hers has more air in it than my own right now. I am thankful she is lending it to me. Now that I don't have to worry about drowning, I can concentrate on getting to higher ground again.
Maybe grandma would like bubble bath or new slippers this year.
Posted by Terri H-E at 7:22 AM