Disarming

Long before I had kids, I determined to face my personal insecurities head-on in an effort not to pass them on to my own daughter someday. I wanted my daughter to be bold in her interactions with others. Not brash, or harsh, just unafraid. Unafraid to do the right thing when she knew it needed to be done. Unafraid to look into the eyes of people she found interesting. Unafraid to make friends, and to keep them. Not so willing to follow the twisted trail that emotions can lead us down. I had shining examples of who I wanted my someday-daughter to be like, and don’t we all? Of course many of the things I imagined were just that, imaginary. You cannot simply cultivate a personality, as many a parent will tell you.

I just wanted to be able to be that shining example. To be a can-do, will-do, have-done, and now I am going to teach you kind of mom. So, for the sake of my daughter I got a little bit braver. I learned a little bit about a lot of stuff. Not long after Sean and I got married, I faced the critical point in my anxiety and depression. I imagined my someday-daughter as I fought with my own feelings for control over my mind, over my days. I did it for her.

I started collecting my weapons. I picked up Self-Confidence, wielding it at any insecurity that might rear its head. I picked up Truth, about me, about life, at least as big as I could picture Truth to be. One by one I strapped on the armaments I thought necessary to go to war with a culture bent on destroying girls at every turn, conservative, liberal, it didn’t matter. Everywhere all I could hear was that I wasn’t enough, and that I was too much. Not strong enough, too emotional. Not friendly, too open. Not lady-like, too girlie.

I battled.

My first child was a boy. Theo. Despite all of this thought of my someday-daughter, I had always wanted a boy. I felt so lucky to hold him, love him, just be his mom. Soon I began to realize I battled for him, too. I fought with messages that told him who to be, and how to think of others. I wanted to be the shining example for him, too, that girls can do everything, anything they want to do. The weapons were getting heavier the more I strapped on. I was learning, I was growing. I was not fighting in vain.  In this world, if we don’t fight as parents, it is a simple fact that someone else will win.

These weapons were building a syllabus, a textbook, of what I wanted to teach my daughter.

And my second child came. A girl. Chloe. I had prepared for this. I was not finished, I was not over every insecurity, but I knew enough to know that life goes on despite our failings. All of the lessons I had been storing up, all of those weapons? They were locked and loaded.

Don’t we all imagine the things we would teach our daughters? Our sons? I imagined these were the easy days, before she could argue, before she could disregard these lessons I had so carefully prepared.

At Chloe’s one-year appointment, we realized she had some delays, in growth, and skills. We began testing. Blood tests, x-rays, an MRI, vision, hearing. Her tiny body had doctors puzzled. For two and half years, the tests continued. Heads were scratched. She grew, she gained little skills, like turning the pages of a book when she couldn’t point her finger to show me what she wanted. Things that would frustrate the average parent were small miracles in our house. Chloe learned to open the cabinet on her own! (Honey, take that toilet brush away from her!)

At age three she still was not walking, or talking. But she stole hearts right out of the air in any room she was in.

Many scary ideas were thrown at us, many frightening possibilities. I clung to my weapons, unsure what to do with them. In March of this year we finally got an answer. For so long, so many questions. With one phone call we found out. Rett Syndrome. Rett Syndrome was not the scariest of the possibilities, but it was still heartbreaking.

Chloe would be severely limited in her capabilities. WE described it to Theo, ever the doting older brother, this way: Chloe will always be Chloe, as she is now. She will learn some. She may walk, she may not. She may talk, she may not. He said, “I wish this thing had never gotten a hold of her.” He was lonely then for the sister he imagined she would be, the companion, the pal, he wanted.  

The day we found out, I dropped my weapons. They crashed to the floor with a single phone call.

Now Chloe has a team. Teachers, therapists, doctors, all teaching me how to teach her. To walk with her tiny walker. To hold a fork or spoon. To control her hands.

And she is bold. She will look into the eyes of anyone who catches her interest. She will hold tight to anyone she wants to hold, familiar, or stranger. I don’t imagine she will ever think she is not enough, or too much. She is just Chloe, and she wants you to know she loves you, whoever you are, and here’s a smile to prove it. She hands out smiles for free, and people take those smiles with them as if they had just found a hundred-dollar bill.

She is four, and I want to be just like her. Disarming.

For more information on Rett Syndrome, see International Rett Syndrome Foundation.