It is not news that Findley and I worry a lot about Virginia's future. But does she worry about her future? Lately I have spent a lot of time wondering what is going on in her little head. I don't know whether or not she is capable of abstract thought. I don't know if she thinks about what her life will be like in the future. I don't know if she feels fear.
I know that Virginia is smart. She smiled on time, she laughed on time- two milestones some of our doctors look at for cognitive development. When I told her we were going to Disney World yesterday, she about jumped out of her wheelchair with excitement. She shows empathy and often cries when I yell at the dogs (or her siblings...). She laughs in the same places in movies that I do. Now sometimes it's slapstick funny- like when Dennis Quaid falls in the pool in The Parent Trap. But sometimes it is situational humor, and it is obvious that she comprehends what's happening.
There are days when Virginia is working with her speech therapist when she seems to do unbelievably well using her iPad to communicate appropriately. There are other days when it's hard to judge what is purposeful and what is not.
I can say that more of my goals for Virginia have become centered in the present and not the future. For example, if Wills and Eliza told me they hated school and wanted to stay home, I obviously wouldn't let them because I know that a good education is necessary for their long term quality of life. I don't feel that way for Virginia anymore. We still spend 6 hours a week with Catherine, our wonderful teacher, and we still put our heart and soul into learning to read and "filling the cup", hoping that one day we solve the communication issue and it all comes pouring back out. But if Virginia started to cry during school and absolutely hated it, I wouldn't make her do it. We used to spend more money on therapy because we were hopeful she would gain function. Now we spend money on fun things- things she will enjoy in the present- trips, music, movies, & swinging porch beds.
I can obviously tell when Virginia is upset, but it usually has an immediate solution. She is thirsty, she is tired, her movie is over, or she can hear Wills and Eliza in another room and wants to know what they are doing. I don't know that I have ever seen her sad or melancholy. In pain, yes. Frustrated, yes. But really sad, no.
When I am in the kitchen fixing a meal, Virginia looks over her shoulder from the den, wondering what I am making and in her own way, asking to partake. Mealtimes are my hardest times- something I enjoy doing for Findley and my other children feels like a dagger to Virginia. If I were her, I'd pitch a fit. I'd be a total nightmare, but Virginia keeps her sweet demeanor without giving up- a very hard balance if you ask me.
When you read about children with disabilities, they usually have a new understanding of their situation and the permanence of it as they enter adolescence. I don't feel like Virginia will, but in all honesty, I just don't know.
I do know that she trusts Findley and me completely. She knows we will be there every morning (and all night long!). She knows we love her and that she means everything to us. If you could have seen her Monday, smiling up at us from the table while the cardiologist was doing her echo, it would have broken your heart. She wasn't scared because we were with her.
I'm sure you know where I am going with this, but that is exactly how I should feel about God. I know He loves me, and I know He will never leave me. I don't know that my life will be easy and pain free, and I can assure Virginia knows that hers won't be either. But we are with her, and most of the time, that seems to be enough.
I don't know for sure that she doesn't feel fear or anxiety about her future, and in all likelihood, I never will. But my steadfast prayer for both of us is that we could be trusting, full of peace, and fully living in the present.
Funny aside. Brian has been cutting my hair (and most of the rest of the Taylor clan's as well) for over 25 years. He comes to our house to cut Virginia's hair because she is scared to death of hairdryers and you just never know when one will start up if you go to the actual salon. So enter Brian, who I actually think enjoys his house calls more than Virginia does. I don't even have a picture of his face because he loves looking at her sweet smile.