Lucas Camilo

An upshot of more mobility: putting together your own outfit

On September 9^th, Ida officially let go of the couches/chairs/tables/doorjams/walls/hands she had been using to help herself navigate the world, and she started walking. She’s walking!

We all have so many feelings about her walking. It is so awesome to see both our kids learning, grappling with and then mastering any new task. Ida is far from “mastery” of walking yet, and she has the scars and bruises to prove how hard she’s working. But it is so exciting to see her do something she’s been working hard on. And she is absolutely pleased with her ability to now get around our house and get into things so much more easily.   And Lucas has gotten into celebrating this achievement, too. Burke and I had been trying not to make too big a deal out of the walking, but Lucas picks up on everything. A couple days after she had started walking, she was making her way across the living room toward Lucas. Clearly the two of us weren’t making a big enough deal of it, because Lucas cheered and called us over. “She’s walking! I saw her walking!” he exclaimed.

But just as you can probably imagine how joyous it is for us that she’s walking, you can also imagine how complicated that celebration feels in our family. Burke and I definitely celebrate Lucas’s awesome achievements – right now mastering hard math skills, learning to navigate a new keyboard and more apps, becoming so much more precise in his communication about his needs. His achievements truly are mindboggling. There’s no reason to compare any two kids, but obviously Lucas and Ida are on their own paths. I hope that we’ve made that clear to Lucas by now. I hope that his celebrating Ida without expressing much envy comes from a place of self-confidence we’ve helped him build.

Amazingly, up until his seventh birthday, Lucas has never spoken about wanting, wishing, or even wondering about doing things that he can’t do. But then one day on our road trip he suddenly told me that he wished he could chase the cat around like Ida. I stopped myself from giving our usual framework (“you can chase the cat, it’s just different because we’re pushing you in your wheelchair,”) and instead I told him I wished he could, too. I asked if there was anything else Ida did that he wished he could do. He said, “I wish I could crawl.” It broke my heart, not just for the simplicity of the wish, but also with pride. Even though he’s now grown up enough to put words to the fact that he can’t do things that most other kids can, he still moves through the world so joyously.

Walking means being able to keep up with friends more easily! This is Ida and Hazel.

But then, Ida was born with her own challenges, and we’ve lived with holding open the possibility that walking might not be the way she gets around the world. Although the difference is subtle to most people, Burke and I can still watch Ida waddling around with kids her age and see how much harder she has to work to get up off the ground and then to keep herself up. We can see the wobbliness in her joints and feel the extra softness to her chunky legs. So a piece of our excitement at her walking is related to her extra hard work, too.

Nonetheless, I feel a little bit clandestine about my joy at Ida’s walking. A couple days ago we had a time to walk around Columbia City on a bright, crisp fall morning. Ida and I were wandering around exploring this place where she has never walked before. She held loosely onto my finger as she walked 20 steps one way, then stopped to touch a potted plant. Then she pulled lightly and we walked over to the other side of the sidewalk to look at some glasses in a display window. I usually feel pressed to get somewhere, get something done, or get food in Ida before its naptime. But at that moment I was so present with the joy at being there with my walking kid, barely holding her hand as she guided me in exploring the range of her own physical possibilities. And I got to see exactly what things caught her attention – the shape of a long leaf, her reflection in the mirror, one person walking by but then not the next. It felt so incredibly good, like all the colors were brighter. I felt self-conscious, like I was getting more than my fair share of joy at that moment and that we were showing off by walking and wandering down the sidewalk together.

So we haven’t posted announcements or facebook videos or treated this new phase of Ida’s mobility like a pinnacle achievement. But we have been thrilled.

Meanwhile, Lucas just took a major new step of his own. Whenever we’re out at a playground kids come up and ask some variation of “whys-he-in-a-wheelchair? whats-that-thing-in-his-neck? Why-does-he-have-that-thing-and-that-thing?” Lucas never wants to answer himself, but usually after a staring kid finally asks a question, Lucas will say “I KNEW she was going to ask that!” But then just two days ago we were out at the park on the Sway Fun, the piece of playground equipment I think of as ours because we worked to get it there, and a group of older kids from Lucas’s school came over. They said “Hi Lucas!” And then they started asking me all the questions. I turned to Lucas and asked if he wanted to answer “why is he in a wheelchair?” He said sure. “I’m in a wheelchair because I can’t walk, and so it’s how I get around.” And then he added, “I’m going to make a slide show to tell people about my machines and equipment.” So matter of fact. So sure of himself.   September 25, 2016. My heart burst with pride again.