Lila Lou

I took these pictures in Utah. Obviously. This post has been in 'draft' form for months. When I snapped these of her, I remember wanting to capture the essence of Lila. The joyful, simple, kind-hearted, pure spirit of Lila. If only to remind me. Since we saw the neuropsychologist last fall, it feels like we have been bogged down with meetings, appointments, therapies and surgeries to address a laundry list of issues. I had a dozen teachers, aids, therapists, doctors,  and specialists, all weighing in on her delays, deficiencies, and deficits. I was taking her to speech for stuttering, to learn to say her R's and her L's, to improve cognitive and executive function, to work on critical thinking and social skills. I was taking her to OT for fine motor delays- so she could carry a lunch tray to her seat without dropping it, so she would be aware of food all over her face, so she could learn to snap her pants, so she could put her panties on the right way, or hold a pair of scissors correctly, or any other of a hundred tasks that she is "supposed" to do, but cannot. We were working on night training, and math, and writing, and reading, and looking up when you walk instead of at the ground, and making eye contact with people when you talk to them and on and on. And on. And I was exhausted. And disheartened. Can you imagine how she felt? Dr. Ben diagnosed her with five different things, each carrying some heavy implications for her future. In that meeting when he explained in thorough detail what right brain impairment would mean for her, I felt heartache. I hadn't made it to the car before the tears started. I worry about people being kind to her. I pray that people will be patient enough to listen to her when she stutters and can't get the words out. I hope that she will find other little quirky friends who laugh louder and longer than everyone else in the room. I hope she'll have teachers who will overlook her backwards S's and understand that her brain can't communicate with her hand to make a K or an X, and appreciate her effort. I think Lila felt the constant pressure of about 12 people who were always trying to change something about her or the way she does something, even at home. Everywhere she went, people (who love her and want the best for her) were demanding that she change.

You could see it in her. At times she looked like she could explode. As soon as she walked in the door from school she would go to the backyard and swing. Or jump on the trampoline. That's always where she was. All alone, on purpose. Just being herself. Outside and alone is her calm. It is her therapy.

So I decided, to the extent that we could, we were going to back off.

I canceled the last months of appointments. We stopped doing homework, I stopped mandating reading, I stopped morning quizzes of sight words. Braden and I decided that she just needed a break to be a kid. Exactly as she is, no strings attached. And that is my plan for the summer.

Since we've been in Oklahoma she spends her days outside with her sisters. They swim and dig in the sand and go on secret hikes in the woods and march to their island for camping excursions. And she's happy. And her night training is going very well. And she reads on her own. And she has taken up roller skating with a devoted passion. I myself cannot bear to watch it because she falls more than she skates. It is actually painful to watch and I literally want to make her stop hurting herself. But each time she falls she gets back up, declares that she's fine, and keeps going. It is perseverance to the max. She practices for hours everyday. And she's gotten so much better. She asked me one night if she could just make the loop around our house 8 more times. Before I could answer her, she fell again. She looked up with a smile and said, " I better go 10". As painful as it is to watch her skate, it makes my insides gush with pride. I know that she will have to work hard at every task her entire life. To see her applying that determination fills me with hope and excitement for her future. She did this same thing with snapping and clicking her tongue.

I know she'll benefit from the professional help of a lot of people over the years. But sometimes I wonder if mostly we need to get out of her way and let her be her. For know, that seems to be right.

For all of the things she is "behind" in, she understands kindness better than anyone I know. I didn't teach her that. She teaches me that. She loves fully and without question. The rest of us spend our lives doing lots of good but non-essential things, well. She spends her time struggling in almost every menial task of the day, but she loves. And she gives. And we're all trying to figure that part out. I've been running myself ragged trying to make sure she learns a hundred different skills that other seven year olds can do. In that good intentioned endeavor, I forgot to let her be her. More than I pray and hope and work for her to progress academically, I pray and hope that she never changes who she is. That in five, or ten, or fifty years, she will still forgive without a moments hesitation. She will always delight in the purity of a baby. She will always gravitate to nature and be grounded in it. She will always be happy for the happiness of others. She will remain without guile and continue to give without a second thought. She will do what she can to make another happy. She will continue to value peace in her environment.

For all of the changes I want her to make, I need to proceed down that path with the greatest of care.

I have the sense that she came to our family for our benefit, more than hers. I've told Braden that if we'll let her, I think she'll save us all. It takes a lot of stepping back. And "big picture" thinking. I think if I joined her on the swings more often I would be better for it. Although, I don't know if she would. I'll have to find my own time and go alone.

Thank you for being you, Lila. That is and always will be, more than enough.