Taking Steps

I search for those little smiles. The twinkle in her eye. The spark of mischief. The smirk that mimics my own. I see them so rarely, that I latch onto them whenever they appear.

My daughter has Crohn’s (or ulcerative colitis, depending upon which doctor we’re seeing). When I first heard the diagnosis, I didn’t know what it was. At that instant, I felt glad for something with a name. I thought they would give my daughter some medicine and make her better. That was three years ago, after months of stomach pains and running to the bathroom. Now, three years later, we’re not to the point of normal, but there is progress in the right direction. I feel hopeful.

As a mom, the guilt and unknowns and lack of being able to fix things are unbearable at times. I no longer sleep restfully. I feel angry with my daughter for not trying hard enough, and then I feel angry at myself for having that thought. I know this isn’t anyone’s fault. It’s not something she did or allowed to happen.

Or is it my fault? Is it the fault of genes? My DNA? The water, the environment, something I should have done better? When I look at photos of her as a little girl or as a hopeful teenager, full of expectations and dreams, my heart grieves for her and yearns for a do-over. If I could turn back the clock and change whatever it was that went wrong, I would. I would.

Right now, my daughter is considered to be in remission. She is going to the gym and swimming laps. She rides her bike. My daughter, an IronWoman, is setting small, reasonable goals for herself. I admire her perseverance. I try to bolster her mood and to keep my own fears and negativity to myself, but it’s hard sometimes.

When my daughter asked me to participate in the Take Stepsfor Crohn’s and Colitis fundraiser, I hesitated. I don’t want to see my daughter as a person with a disease, let alone with a disease with no cure. Maybe by sharing my own story along with hers, we can help to find her a cure.