The question we were asked was something like, “How has Grace affected your life?”- Kevin and I just looked at each other for what seemed like several moments- too long for the situation we were in. We were being interviewed on camera for a TV commercial featuring Grace for Make-A-Wish’s Jolly Holiday Lights. Luckily they can edit out the long pause if they end up using that part of the interview!
As I looked at him – and thought about all we’ve been through both in the long haul and in just the last week… I started speaking and crying.
Last Sunday was Grace’s dance recital. It was wonderful. So many people were there to see her! She was having an incredible time! Grace, Jill (our ballet engineer), and I were sitting towards the back of the auditorium. As the recital started Grace fought to stand up and so I let her. She stood in front of her seat and made some noise…noise that said “let me go dance!” She put her little face at eye level with Jill a few times and tried her best to convince her that it was time to go dance. I was so moved by her persistence. I tried to tell her that she’d be tired before she even got up there to dance…but she insisted on standing…and continued to plead her case! She did sit on my lap for a song before it was time to go. When it was her turn up there, Jacque, Chloe, and Jill all in place I just held my breath trying to take it all in. Love in action….playing out right in front of me.
Monday felt much uglier. We didn’t have a nurse that day, so I got to be Grace’s nurse for the day. I took her to therapy and was frustrated to see her fight not to do things that I know she can do. I felt like a horrible mom, I haven’t been at therapy a lot lately and I didn’t know how hard a time she is giving them about certain things. I cried when I got her loaded up in the van…. How am I supposed to know everything when I’m not there every minute? How can I do more than I’m doing? Are my priorities all off?
Then we got to school. Grace is behind- there is no way of not noticing it there. There’s a lot I don’t know about her day to day. The other kids were quite generous in explaining the rules to me, how to use an ipad and where to line up after PE. Oh how I wish she could tell me the rules – I can’t ask her about them, I can’t listen to her talk about them with other friends – there’s no “what’d you do at school today?” while we eat supper. And then there is art class. What is Grace supposed to do in art class…the answer to that question alludes me. Do you know that they talk about Thomas Jefferson in 1st grade?
Tuesday night was a PTO meeting. At PTO the related arts teachers were all there, I asked to spend a few minutes with Grace’s music teacher – to make sure everything was going ok with Grace in class. She asked me some basic questions about Grace. Why did she wear the helmet? How is her vision? How is her hearing? Could she hold an instrument? My heart sank…it’s almost Thanksgiving and this teacher didn’t know much about Grace…that was our fault. I need to step it up!
Wednesday was communication class. Kevin and I have taken a class the last eight Wednesday nights. We have been learning about different ways to communicate with Grace, how to grow her interactions with us, and its hard stuff. Grace was different from the other kids…we didn’t go into it expecting her to talk more, or pick up new vocabulary, or use sign language better…we came into it just needing to learn more…desperate to get any kind of communication going with Grace. In October we took another class about communication, and it made sense! We think we have a way to help grow Grace’s communication – we are starting with 15 words. 15 words are not very many. But, 15 words can do a lot. We need everyone to be on the same page to implement it though. Everyone’s busy. Her teachers, her therapists, and we need them all to do their part. I ended up begging (in a good natured manner) for something we needed from her therapist to take the next step.
Thursday night was parent teacher conferences. We were at school for over an hour. Grace is doing well on her goals. There are limits though. And as much as we appreciate everything that’s being done – we want the ideal. There’s no answers for some of our questions. We aren’t confident in our expectations and people expect us to be. But here’s the thing…how are you supposed to have expectations about Grace, she’s constantly evolving and changing, she’s doing things they told us she never would, and there’s no one forecasting her future for us these days. We are on our own.
I am the one who started answering the question first…I believe I started out by saying that Grace has been “life-altering” and I went on from there. I don’t remember the rest of what I said.
Even now I’m not sure how to answer.