Edited 3/28/06 AM
Some wounds never completely heal. Others are re-opened again and again. Raising a special needs child afflicts families with both kinds of wounds. Tonight had the potential to manifest either kind, or both at once.
It all started with Elli's school's Spring Arts Program. Her class joined 4 others to sing a selection of songs as one large choir. Each child also displayed their best artistic efforts in an art show outside the auditorium.
The kids have been working on their songs and their art pieces all year. They even practiced today. Our whole family has been looking forward to this evening and seeing a little bit of what Elli has been enjoying so much at school. Elli seemed excited to pick out a dress for the event, and Sam was excited to be included in one of her activities.
We even managed to get ourselves there on time. This despite realizing, when we were less than a block from the school, that I had picked up two left shoes for Elli in my haste to get out the door, returning home for the missing shoe, and heading back again. (Sam was cheering "We're going faster and faster!" from the back seat.)
Scott dropped Elli and I off at the main entrance so I could take her back to the choir room to join her class while he parked the car. (One special moment came when, as I rolled Elli down our van's ramp, a father in a wheelchair rolled by and said, "Hi sweetie" to her. There's a special bond between people in wheelchairs that I love.) The children performed at the high school, where they have a nice large stage and plenty of seating for families. Elli's class was in the second group of children this evening. So when we arrived, the first group of families were leaving and the entire common area was full of people.
We headed down a crowded hall towards the choir room. I ran into one of her aides and we walked together. The excitement was palpable and the halls pulsed with energy. All seemed fine until we reached Elli's class. The kids in her class all cheered for Elli when we walked up, and I complimented them all on their nice clothes.
Then I turned to say goodbye to Elli, only to find her crying. The room was so noisy, filled with 100+ five- and six-year-olds, that I hadn't heard her. She rapidly grew more and more upset. I took her into a practice room, adjoining the choir room. Closing the door shut out all the noise (amazing - I want a practice room for a bedroom!), which I thought might help. I talked quietly to her and explained what we were doing over and over, but she just kept crying. I tried getting her out of her seat and holding her, but she got even more upset. I think at that point she thought she was in trouble - I really don't know.
Her class was last to file out, so I waited until the last minute and then took her back out to join the class. Her aide was there and I told her not to take Elli out on the stage if she was still crying. I did not want her to scream and make a scene through the entire performance. That would ruin it for everyone else.
I had to bite back the tears as I hurried into the auditorium. I passed the art show, but it was already half-cleaned up. I don't know if Scott found her art before he went in for a seat, but I guess I'll see her piece when they send it home. As I took my seat, I heard Elli crying behind the huge curtain on stage. I knew from past experience that she would not calm down. I knew that all the trouble we had gone to to borrow a video camera so we could show her grandparents her choir concert were for naught.
Sure enough, the curtain opened and Elli was not on stage. (The hundred+ other children waving at their parents was SO adorable.) Sam scanned the crowd and then asked, "Mommy, where's Elli? They need Elli!" I tried to explain that Elli was really upset and couldn't sing because she was crying. Her teacher and aide had taken her off stage. They kept her in the wings for a couple songs, hoping she would calm down and be able to join her class. They told me later that she would quiet down and then cry again, over and over, so her aide finally took her out into a quiet hallway to wait for the show to end. She finallly settled down out there.
Sam and Anna really enjoyed the concert, despite Sam's continued concern for Elli. They danced to the songs and Anna made friends with the people in the row behind us. Scott videotaped everything anyway so we could show Elli later. I tried not to be so sad as I watched all those kids waving and smiling and singing, while on stage right, behind the curtains, I saw Elli's wheelchair leave the stage area when the staff eventually gave up trying to calm her down.
At the end of the show, another mom introduced herself to us. She has two daughters, one special needs and one healthy, both of whom ride Elli's bus home from school. We've spoken on the phone and took our girls to the Perlman Center when they were younger. Both girls are involved in aquatic therapy on Fridays too. She asked where Elli was and I explained what had happened. She said that E, the daughter in a wheelchair, was home sick tonight, but she didn't think E would have made it on stage either, had she been well enough to try it. It was nice to talk to another parent who understands a little bit of what the night was like for us.
As we were walking out of the high school, I thanked God for giving us two healthy children in addition to Elli. I look forward to enjoying evenings like this the way those other families were, when our younger two are old enough. Having two typically-develping children has been such a blessing in that they allow us to see and experience how life is for most people.
In a way, it's like living a double life.
We do our best to include Elli in events like this. But no matter what, these things are always a little painful (for me, at least), and probably always will be. There's this quiet, wistful pain of longing as you look at the other healthy children, pain that doesn't disappear even when you have fully accepted what a special child's challenges mean for your and their life. It's the pain of grief over what your child has lost or will never have. This wound heals over as you accept and love your child for who they are. But it gets reopened during events like this when you discover something new that your child has lost.
Then there's the pain that never heals: a stabbing, somewhat embarrassed pain of having your child out there in front of everyone, so obviously different. You are proud of your child for getting out there and doing what they can; you are happy for them when they enjoy the way they are able to get involved; you work so hard to include them with everyone else; yet you are conscious of the spectacle this can make and have to consciously resist the awkwardness and discomfort and pity of those around. And beneath those feelings is a shame of being embarrassed at all.
I'm so thankful that the four of us have been given Elli to show us her way of looking at and engaging with the world. Our lives are richer and our comfort with and ability to accept and relate to people who are different has increased one-hundred-fold. I wouldn't have it any other way. But that doesn't change how hard things can be.
So why did Elli melt down tonight? I don't know. For someone who enjoys music and singing so much to react this way is as shocking to us as it is heart-wrenching. We've always expected to find ways to include Elli in music. Now it looks like we have to go back to the drawing board and find new ways to include her in things she loves. And keep conscious of the things that she really doesn't or can't enjoy so we don't push her into such disastrous scenarios again.
