“Before I knew you, I thought brave was not being afraid. You’ve taught me that bravery is being terrified and doing it anyway.” — Laurell K. Hamilton, Blood Noir
That’s it. Exactly. Since E was diagnosed with Crohn’s Disease last June, the near-constant din of worry and fear has stayed with me at varying volumes and intensity. Right now, it is my music.
Last week, E’s doctor informed me that E’s latest test results revealed lower-than-optimal drug levels. I was told to be on alert for any renewed symptoms and to report them immediately, at which time the doctor would likely add a medication. Despite my frequent inquiries about how she’s feeling, E didn’t let on that the pain has returned. Until Monday night, when she spilled the beans that she’s been in pain off and on for the past week, and increasingly so.
“Why didn’t you tell me until now?” I asked (calmly, because I am well aware of the contagion of moods, and the last thing I want to do is to raise her anxiety level).
“I wanted to make sure that’s what it was,” E said (as in, not just a passing thing).
I get it. (Though I wish she’d told me sooner. We’ll have that conversation another day, when she’s well enough to hear it.) She doesn’t want to take more drugs. I don’t blame her. I’ve been pushing the doctors to get her off whatever we could as soon as we could, and it’s worked pretty well since the summer, where her flare necessitated multiple meds and, as a last resort, a four-week course of steroids. Her admission must have felt like a failure; like we’re taking backwards steps. Are we too late to stop it from a return to last spring’s debilitating symptoms? Or will she start feeling better soon? In my research and conversations about Crohn’s, the stories run the gamut. There is no one typical path. So we don’t know which road we’ll be on, which makes uncertainty our reality.
Uncertainty is hard for everyone, especially a planner like me. But when you just don’t know what your tomorrow is, it reminds you to celebrate today. Today, E is home. It’s not a great day–she’s not feeling well, nauseated and exhausted. But here’s the flip side: I get to spend the day with her. I get to be the one who tells her it will be alright. More than anyone, she trusts me with her care. And I will not let her down.
E inspires me with her innate bravery, her fierce determination to live her life fully and be like every other kid. But I need to be brave, too (these bracelets–called Bravelets*–remind me to be strong for her). I’m here to shoulder the brunt of the worry so that she doesn’t have to.
“It’s not the size of the dog in the fight, it’s the size of the fight in the dog.” — Mark Twain
*Bravelets are wonderful bracelets where $10 goes toward the associated cause per bracelet. They all bear the “Be Brave” motto and come in different colors depending on the disease/disorder/cause. (For the ones I wear, the $10 goes to the CCFA, the Crohn’s and Colitis Foundation.) There are bravelets for cancer, autism, heart disease, and many other diseases and disorders. http://www.bravelets.com
I had dinner with a friend a couple of weeks ago. She has a highly successful career, a great relationship with her husband and, in the 13 years in which I’ve known her, has vehemently denied any interest in having children. Now 37, she finds herself suddenly on the fence on this issue. She knows that if she and her husband do, in fact, decide to take that never-going-back plunge into parenthood, they can’t wait much longer. But she’s not sure whether they should. She quipped, “No one who has children will ever tell you they made a mistake.” True, that.
To Parent or Not to Parent. Obviously, their choice, not mine. I was not about to weigh in on what would likely be the biggest decision of their lives. There is no “right” answer. It’s what feels right to them that matters.
So I had no answers for her. But this made me think about the choice of becoming a parent. For those of us who had children later than when our biology may have liked us to, this is usually a conscious act. I had my daughter at 33 — like early November foliage in the Hudson Valley, a little past peak (which, if you went by the egg donor ads Sony Theaters used to run, is 18 to 32.) I took the leap after losing my job and deciding to become a freelancer. The time seemed right, the dog wasn’t quite cutting it anymore, and I felt ready — or as ready as I ever would be. My heart told me what I needed to know: I wanted to be a mother.
Split screen now to younger parents. I often wonder if they feel the need to soul search as much as those of us who waited longer. Does it feel like quite the same leap to a 23-year-old mom as it does to a 37-year-old one? Does age add complexity to what could just be seen as a natural next step, after finding a suitable mating partner? My hunch is that with younger parents, there is more action, less thought. Which makes sense: They haven’t had all of those years as adults without children, so there’s not the same basis for comparison: Life Before vs. Life After.
And when I think about my friends who took the plunge later, as I did, it brings me back to my journey with my daughter, as she fights her way back to good health. When I’ve relayed the story to fellow parents, many times they respond, “I can’t even imagine what that must be like.” Except here’s the thing: I think they can. When you’ve taken that conscious leap into parenting, having a child who gets sick — life-threateningly sick — is a scenario you’ve played. It stays in the back of your mind, in the “But what if?” part. You keep it back there for good reason — it would consume you if you brought it to the fore. We all have these fears, either the moment we choose to become parents or later, after our children are born.
And here’s the answer to that “What If?”: If that happened, you would do everything you could to make your child healthy again. Would that make you heroic? Brave? Not especially. It would make you what you already are — a parent. No matter what, I feel grateful and fortunate to have taken this plunge. My life has never been the same, and I mean that in the best possible way.