Ability redefined

Note: this post was originally published over at the HennHouse in January of 2008. But it is as true today as it was then. Even if some of it has changed.




Last Thursday, Esther-Faith told her teacher that she wanted to use the potty like the other kids. To that point, Esther-Faith did not use the potty. We never intended to potty train her—we were going to move straight to teaching her to self-catheterize.

But she wants to use the potty.

So we are teaching her to use the potty AND to self-catheterize. I remember Kate telling me how she got on, went to the bathroom, and washed her hands when she was done. Obviously with lots of help. And I remember walking into the hallway outside the classroom, holding my daughter tight, and just crying. Tears of joy. And surprise. And indescribable emotion as Esther-Faith, of her own motivation, had once again done something we were told she would never do.

But I’m learning… there is nothing that my daughter cannot do.

Let me review. Two years ago she was born with a permanently disabling birth defect called Spina Bifida. She has the most serious type, myelomeningocele, which causes severe nerve damage and more serious disabilities. She also has hydrocephalus and Chiari II malformation. There are a number of things we deal with each day with regard to and as a result of her primary medical condition. She is allergic to latex. She has a neurogenic bowel and bladder, which require a bowel management program and consistent catheterization. I could go on.

She has a walker, knee ankle foot orthotics, and a tiny little wheelchair. And when she was just seven days old, a neurosurgeon placed a small machine called a VP shunt into one of the ventricles of her brain and wound the tubing down through her neck and into her abdomen. The shunt drains cerebrospinal fluid that can’t drain on its own.

At some point in her life, that shunt will fail.

Probably more than once. And she will have more brain surgery. She pushes on the tops of her ankles when she wants to stand. It looks painful, and probably isn’t good for her feet, but she can’t feel it. She doesn’t eat normal kid things like bananas, pineapple, and watermelon because they are cross-reactive allergens to latex.

Her physical and cognitive pre-natal diagnoses were grim. Our world seemed to close in on us. There weren’t enough tears and there wasn’t enough ache to grieve the things that I was being hold my baby wouldn’t do. But then, the most amazing thing happened.

Esther-Faith was born.

Let me be very clear. Esther-Faith’s mobility is limited. Her bowel and bladder function are inhibited. She will face numerous challenges. And she has many disabilities.

But make no mistake about it… SHE IS NOT DISABLED.

There is nothing that my daughter cannot do.

Esther-Faith, born with all of these things, was also born with tenacity, determination, and motivation—the likes of which we have never seen. She seemed to know right away where she fit into our family. She knew what she needed to be for Isaac. She knew what she needed to be for Isaiah. They willingly sacrifice for her every day—things like peanut butter, blackberries, and some of their favorite toys. And I have never seen three siblings—who in all reality are so very different—care for each other with such mysteriously deep and genuinely sincere love.

I love the way she grabs my chin and turns my head to face her, all the while saying, “Look at me.” Or when she turns it away from her saying, “Look over there.” I love the way she knew how to read, say, and sign the alphabet at 13 months old. I love the way she gets around, even if it isn’t by walking.

I love the way she is sassy. And sweet. And stubborn. And demanding. And caring.

I love the way she shares EVERYTHING with her brothers. She uses her polite words 99% of the time without being prompted. Saying, “please” and “thank you” and if you don’t respond in kind, she will say, “you’re welcome” for you, too. I love the way she learned to do tricks with her wheelchair before she learned to navigate in a straight line.

I love the way she can already count to 26, and knows how to say, sign, and read the days of the week. I love how the other day she picked up “The Cat in the Hat” and read all of the words off of the page to which she opened the book. I love that she surprises us every day.

I love that she says, “brother-fly” instead of butterfly. And “purr-retty” instead of pretty. She adds the “ah” sound to the end of most words for emphasis (Krissy-ah, “I want it-ah”). And she signs almost everything she says. That sometimes she calls me Karin and calls her daddy Tim.

She likes to say, “No, I can’t.” But we all know that it really means, “I don’t really feel like it right now—and I don’t do anything I don’t feel like doing.” She is always excited and is very rarely grouchy. She believes she can do just about everything her brothers do—soccer, daddy whoopdown, drink her milk directly out of her cereal bowl, read, and even walk up the stairs.

She truly is a remarkable little person, and it is a privilege to be her mother. I will never forget the first time I saw her tiny body in that tiny incubator at Children’s hospital. And even thinking of it now, I am overcome by the memory of the emotion and hesitation in that moment. Of what I didn’t know. Of all that I feared. And how, through that uncertainty and fear, I forgot about the diagnoses and fell in love with my daughter.

The last two years have been such a tremendous ride filled with distinct memories and humbling moments of Esther-Faith doing all the things that we were told that she might never do. Every day I am overwhelmed at the awesomeness of the gifts that God has given me in my children.

Especially, the tiny gift I never asked for two years ago. The gift that, three years ago, I would have told you I didn’t want. And now, I ache at the passing moments. That these days she is with me are fleeting.

She has changed my world and my expectations and my definitions. 

And there is nothing that my daughter cannot do.

7 Responses to Ability redefined