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Just two days ago Kevin and I were having a conversation in the living room. Talking about our day, what we needed to do, etc. Graham inserted himself into the middle of us and yelled “It’s my turn to talk!” We both stopped to listen to him (and giggled a bit if the truth be told).

Graham can be so loud and it gets our attention so quickly. Grace is so quiet. I’ve been thinking about how quiet she is a lot lately.

Me thinking about it started around Easter time. We went to a special needs Easter egg hunt and Grace and I did our thing while Graham and Kevin did some other things. Grace and I had done some activities and it was chilly and windy, and she was complaining to me. Grace complaining sounds a little bit like Chewbacca from Star Wars. I knelt down in front of her (she was in her wheelchair) to talk to her for a bit, the noises stopped as she listened to me. When Grace and I talk she leans down and rests her helmet on my head and with our faces close together we talk. As I was getting up from talking to her I caught sight of someone taking our picture and at first it irritated me. That was her and me time, not something for public consumption. But then I got to wondering, what does that look like to other people? Do they understand that Grace resting her head on mine is a sign of trust?

I watch her in feeding therapy as the therapist provides pressure to her cheeks and head and watch Grace bob and sway to try and get away from that touch and that pressure. (It’s important that we push her in this area so that she’s more agreeable to people helping her, with things like brushing her teeth and washing her face. As she gets older/stronger her dislike of this could make it harder to care for her. ) I know that she will lean that same cheek that she hates for the therapist to touch towards me so that I can give her a kiss.

That therapist is new to Grace’s team and has asked me how to know how Grace feels about her. I have assured her that I think Grace likes her and is willing to work with her. I know this because Grace makes direct eye contact with her.

I watched her the other morning with her nurse. He was sitting next to her and she couldn’t get a toy to work like she wanted. She put her hand on his and pulled it towards the toy. She trusted that he would help her.

Then one day in the van I was sitting in the back seat right next to her and I was complaining about something. Grace placed her hand on my knee as I was talking. It felt like she was telling me “it’s going to be ok mom”.

I see her accept bedtime hugs and mooches from Graham. I think she would pull away from anyone else who approached her that way.

I have seen her trying to catch the eyes of the people who help her dance. And when she does she just looks at them in this way that makes my heart so happy.

I see her lean into the woman who takes care of her in the church nursery.

We took her to get an ultrasound of her kidneys and she wouldn’t let go of my hand the whole time.

These are all such quiet signals of love and trust. They can easily be overlooked or undervalued.

Grace will never squeal in happiness to see someone. She will never throw her arms around someone and give them a huge hug.   She will never make herself the center of attention clowning-around. She rarely smiles. She giggles on occasion.   Most of the time she looks very solemn. Because she is so quiet I fear that she will be overlooked. I have purposely dressed her in the loudest (most colorful) outfits I can find wanting to make sure that she won’t be missed. I don’t feel the need to do this as much as I used to- but I still have a few loud outfits on hand.

Because her reaching out, and enjoying something is so quiet I see people become discouraged in their interactions with her. It takes energy and dedication to be enthusiastic with someone whom you think doesn’t return your enthusiasm.

I’ve even thought about my time at Exceptional Person’s Camp. (I volunteered as a buddy for mentally and physically handicapped adults for a week or two most summers from the time I was in junior high until I had Grace…a long time.) Each session there was a talent show – with rowdy clapping and yelling of enthusiasm for talent that the regular world probably wouldn’t deem talent. One camper – I have no idea his name, had been quiet almost all week. I was surprised that he got up to be in the talent show. His buddy held a microphone to his wrist, he hit a button on his watch (a Mickey Mouse watch) and “It’s a Small World” played through the microphone. He didn’t smile, he was matter of fact, but we all cheered and screamed like we were at a major rock concert.

I’ve decided that it’s my job to metaphorically make sure that Grace has a watch that plays music. She too has something to offer, and though it may be quiet, and though people who are in a hurry will miss it, she has every right to that microphone, a buddy to help hold it, and the cheering.

Joy

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