Yesterday a woman who works at Barnes & Noble walked right up to my daughter, Lucia, who is two and half, and greeted her–she knew her but she didn’t know me. One of Lucia’s favorite nurses, determined that she wouldn’t become isolated with our recent move to the country, regularly takes her on outings to book stores, walking trails, parks, and libraries, and this woman had read books with my child many times!
Another day when I was working from home and a friend stopped by the house, Lucia was out on one of these excursions unbeknownst to me. The friend was a little disappointed.
Lucia has her own social life, I chuckled. Who would have imagined? I thought.
Indeed, I think it’s easy given Lucia’s diagnosis, physical, and cognitive challenges to presume that she lives a limited life, but this is so far from the truth. Precisely because we’ve been forced to rely on nurses, doctors, and therapists to help us care for our medically complicated child, Lucia’s social network has certainly widened beyond the typical toddler’s.
At the outpatient facility where Lucia does her therapy she’s not usually interested in toys, but she always cranes her neck to see the other children running and jumping and shouting. This morning Lucia’s nurse, having just returned from China, brought her a Chinese children’s book and Lucia cocked her head to listen as the two of us yammered on in Mandarin about her trip. Several months ago, one of her nurses put her hair in Jamaican braids!
I think about the incredible richness of the life Lucia leads and I am in awe. Our minds, our predictions, our perceptions of life with disability often fail to see beyond the presumed downside of dependence, medical necessity, and constant care. But Lucia’s needs have, in such a good way, forced us all to expand our very limited social circles and our very limited notions of what life with disabilities entails.
A month or so ago when I spoke on the phone with a parent advocate about Lucia’s impending transition out of the state’s early intervention program and into school, she compassionately yet inaccurately projected another presumption onto me: “Oh I’m sure your heart is just breaking at the thought of her going to school all day, on that big bus! I’m sure it is so hard to see her go.”
Perhaps it would be hard to see Lucia get on that bus if she hadn’t already been living her life so fully. But knowing how much Lucia enjoys all of these people, adventures, and diversity in her life, my husband and I are decidedly eager and excited for her to start school. Perhaps another thing all these doctors visits, nurses, and therapists have prepared us for is trusting others with our kid, knowing it’s so important to share her rather than shelter her from the world.
When I look in awe upon Lucia’s full life, I cannot fathom the wisdom of God. This is precisely the life I would want for my child, and yet, who could have imagined this life in particular? Who could have imagined this village that God has provided, this little social butterfly despite her lack of words and gestures? Who could have imagined that it would take the world and its limitless possibilities to help us see how Lucia has expanded all of our lives? Who could imagine that a life with disabilities could be so rich and nuanced and bold and grand?
Well, God, of course.
And thank God for that!
