“How are the boys?”
It is the question I’m most often asked. It is a kind question, it demonstrates that the inquirer knows me, knows that I’m a mom, and wants to demonstrate that he or she cares about my kids. Generally, I obey social convention and say, “fine.” And on some level that is true. My kids do not have a dreaded disease. They are not ill with cancer. They do not have a developmental disorder that will keep them from speaking or reading. They are fine. Except they are not.
Sometimes I give in to the vile temptation to tell the truth, and it spills out of my mouth, like a silk scarf slipping off a chair: “They’re struggling a bit right now. W vomits constantly and J is going through something that I’m not sure I can describe—he falls to pieces a lot.”
Some people handle my confession with grace, listening, taking in the information and giving me something I need in a return—a safe place to set down my worry for a bit. Others look startled, eyes wide like a doe. That’s when I know that I’ve goofed. I wish I could gather the words, pull them back in, scoop the scarf up off the floor and arrange it perfectly back on the chair, just as it was before I spoke.
We do not yet know why W continues to vomit multiple times a week. J is a great, ancient art work, beautiful, complex and exquisitely breakable. We feed W the way you walk around an active volcano. Each careful step full of hope, knowing the ground could explode at any minute. J does not vomit, but he explodes all the same. We tiptoe around him too, trying to be his glue, calming him, pressing him together, helping him feel safe.
But carrying around the weight of two kids who aren’t functioning optimally is tiresome. It is exhausting in the way having a chronic illness is exhausting. It is a heavy weigh that pulls on you from behind, tugging as you try and move forward.
This is the damnable misery of being human. We deal with unknown illnesses and uncertainty and then we fix dinner, finish a brief, and get up and do it again tomorrow.
You might be tempted to think that I would be better at this because I deal with my own chronic illness. You would be wrong. With my own stuff I have some measure of control, if not over the disease itself, with how I choose to process and respond to it. With our children’s issues, we are helpless.
Our children believe our kisses heal boo boos. Yet we cannot quell W’s vomiting. We cannot shore J up, make him less likely to shatter. The only ointment we have is the one we’ve always had. It is an amazing salve:
My boys are as they are right now—perfect in every way, even as they are imperfect. But I am also fearful. Fearful that I won’t like how this turns out. Fearful that no one, not doctors, not therapists, not grandparents, or friends will be able to fix this. I am afraid that when the time comes to surrender to the conclusion of W and J’s conditions I will stand clinging to my idea of what should have been, my knuckles white with my own desire.
Intellectually I know I should let go of any preconceived idea of how this should turn out in the end. I should surrender to God. Or, in the parlance of my generation, I should understand “it is what it is” and let go of trying to change it, which I suppose is some quasi-Buddhisty-New-Age something or other. But nobody actually does that. We just tell other people to do it because we feel the need to say something helpful.
These are my kids. I’ve been imagining how their lives would unfold since I was a kid. So has every parent who ever drew a breath. So has my husband, who is my partner and a wonderful, involved father. For right now I am investing in a psychological program that would not sell a self-help book. I have decided to be angry, tired, and sad. I might even engage in some, God forbid, self-pity, which is extremely un-Presbyterian of me. I have decided to cling to hope until I have rope burns.
Of course, I give you my word, that I will not to let my anger, self-pity, and rolling around in psychological muck interfere with my loving and compassionate parenting, because that is what unconditional love requires.
I love every hair on my kids’ heads exactly as they are.
Yet, honesty requires I confess that my best parenting of my struggling children also comes with fatigue and resentment. I’m angry at the doctors that don’t have answers, at the doctors who waited to long to see that something was wrong, at the referrals that take months to get, at myself for not being better at defusing tough situations, and so on. If I don’t say that is so, I do a disservice to other moms of sick and fragile kids out there who feel the same way, but who slither under rocks or turn off their computers when they read the sugary sweet musings of mothers, better than me, who “let go” and “give it to God” and all manner of other things that don’t involve a little anger and disappointment at dashed hopes.
I believe in God. I believe in Grace. But I also believe in telling the truth. See above.