Caterpillar Summer

In recent weeks, I have been forced to conclude that happiness is something that sort of sneaks up on you. I think I reject the idea that you can “deserve” happiness or even pursue happiness as though it’s some sort of end in itself. I rather suspect that happiness is instead a byproduct of 1) chance, and 2) living with integrity. For those who have lived through tragedy and suffering, there is simply no argument that can dismiss the reality that happiness can only arise when the unpredictable and terrifying proximity of death seems to be evanescent, at least for the time being. Living with integrity, however, is something that is at least somewhat within the realm of things we can control.

For many of us who have lost children, we can empathize deeply with the soul-deep compulsion to act and choose in such a way that we will be able to live with ourselves if something happens to our other children. And although this may require higher levels of both self-awareness and self-discipline, the ability to sleep through nights empty of self-loathing may just be worth it.

From the time of her birth, Cecilia has been the center of my world, and this fundamental axis has not changed. But she has changed. I can no longer ignore or deny the ways in which she’s grown, and although I still call her “my baby,” the truth is that she looks far more like a toddler these days. She has twelve (twelve!) teeth, beautiful, silky brown hair, and is getting heavier every day. One of my deepest concerns with her lack of vision has been her delayed gross motor development, but even this has begun to shift in the past week. She is standing, stepping, and cruising with support for longer and longer spans of time, and I find myself just sitting back and watching her in wonder, giggling in response to her giggles, clapping in response to her claps, and near bursting with unapologetic pride in her undeniable progress.

If I’m real with myself, I think I thought this day would never come. I think I thought that Cecilia’s whole life would be a battle first to keep her alive and second, to have to run harder and longer than other parents in order to just keep Cecilia on a level playing field with sighted kids. And the truth is that she is still developmentally behind other sighted toddlers her age, but I find it almost doesn’t matter. In the past months, I have watched Cecilia work her little heart and body as hard as she possibly can, not because she’s aware that she’s being evaluated by therapists and doctors, but because she’s striving after life–after the inexorable, intoxicating reality that envelops and consumes her with its brimming promise.

Anyone who thinks about Lizzy cannot help but remember her insatiable thirst for life; she went after it with arms wide open and eyes shining. I think I feared that Cecilia’s blindness would cripple her ability to pursue life, but I find that fear fading as I watch Cecilia explore and strive with all of her strength to do the same things that were so simple for her big sister. And although she gets frustrated, she doesn’t stop and she doesn’t give up. She simply tries and tries again, until she’s too tired and my heart is too swollen to do anything other than pick her up, hold her, and tell her how desperately proud I am of her.

What does “happiness” really mean? Maybe it’s as simple as those times in your life when tragedy abates long enough for you to appreciate the small things. Or maybe happiness is like a flower that only appears once you’ve spent the time, energy, and intention to create optimal growing conditions. I don’t know that any definition of happiness actually matters in the end; I think the important thing is simply to recognize it when it graces you with its presence and refuse to forget it when the darkness inevitably returns.

I cannot hide from the reality that I had two incredibly happy years with Lizzy. She was loved, wanted, and nourished for every single second of her short life, and that is far, far more than many children in this world ever experience. I have learned to be grateful for that. And in the process, I have learned, too, how to acknowledge, receive, and revel in happiness when it comes. I cannot deny how happy Cecilia makes me anymore than I can deny how profoundly afraid I am of this coming winter. I am no prophet to gauge what lies in store for Cecilia in the next six months, but I am very sure that I will enter it with gratitude in my heart that we had this summer together.

I realize that it was not the summer I dreamed of us having, nor does it compare to that last summer I had with Lizzy. But is has been our summer. My Cecilia summer–colored mostly by my little blind girl who is more like a caterpillar than a butterfly, taking her meticulous and inching time to cross the road. For months, we’ve been wrapped in a cocoon of giggles, hugs, tickles, and stories. We’re suspended in Cecilia time, and I’ve found I’m more than okay with it. I am–in plain fact–joyous with it, because I believe I’m eventually going to find that cocoon empty and my fragile, brilliant butterfly is dancing around me, beating incandescent wings I feared she’d never grow.