I awoke today at 3:30 PM, after falling asleep sometime around midnight. If the early bird really does get the worm, I’ll be dining on dirt today. Unfortunately, this late rising is nothing new. I don’t know if my fatigue is caused by my disease (chronic, multi-system sarcoidosis, just in case any newcomers are tuning in) or my treatment (a toxic brew of prednisone, Remicade, and Imuran—an unholy trinity of immune suppression) or my sleep disorder (central sleep apnea—which I’ve just begun therapy for), but it’s all too familiar.
Whatever the reason, the day feels finished before I’ve even rolled over and cracked an eyelid to check the time and gasp at how late I’ve slept. Once I’ve swilled enough coffee to force open my other eye, there’s hardly any time to write, keep up with friends, exercise, go to one of my ubiquitous medical appointments, cook dinner, or say hello to that guy called Jay who’s been my husband for over ten years, but who I don’t see a lot of lately what with all my sleeping.
Or to be a Mom. Today’s a weekend day, which means no nannies showed up to entertain my four-year-old son, Andrew, who wakes up before eight with an explosive amount of energy. I am so conked out that Jay says I don’t even stir when Andrew jumps on the bed right next to my head and yells in my ear. Even though he works more than forty hours a week for two different government agencies, Jay has “Andrew duty” on the weekends. I know Jay is exhausted, though I also know his fatigue is different than the bone-gnawing tiredness that overwhelms me and makes moving my fingers around on the keyboard feel akin to rearranging large rocks. My guilt for all that Jay does (and I don’t) is a given in my life now. I carry it with me, sort of like a new organ. There’s my guilt, right next to my appendix. I’m surprised it hasn’t shown up on the imaging of my frequent CT scans.
Jay swears he doesn’t mind taking charge of Andrew on the weekends. They do fun things together. Today, for instance, Jay took Andrew to a T-Ball (Little League baseball for the pre-K set) camp run by our local minor professional league. Andrew got to practice catching and throwing with a “real” baseball player named Paul. Then Jay and Andrew strolled through the farmer’s market so that Andrew could say hello to all the “regulars,” particularly George, a woodworker who makes rocking horses, along with rocking helicopters, bears, airplanes, and carsandlets Andrew test drive them all because Andrew is well-mannered and gentle aboard George’s inventions. Andrew and George are buddies because Jay and Drew have been visiting the market nearly every Saturday for the past three years while I, on the other hand, snooze away the day. After the farmer’s market, my boys came home for a quick lunch and then bicycled off to the water park, along with Andrew’s “big-girl” buddy and sometimes babysitter, Anna. Now that he’s too large to be towed in a trailer behind Jay’s bike, Andrew uses a “tag-along”—a quasi-tandem that hooks on to Jay’s bike and that allows him to pedal along with Jay. They came home for lime Popsicles right around the time I was downing my coffee.
This wasn’t how it was supposed to be. No matter how many lectures I deliver to myself about accepting the life I have and being thankful for every moment I have to live with Andrew, I can’t stop feeling like I’ve been cheated out of being the kind of mother I expected I’d be. Because I was diagnosed with sarcoidosis when Andrew was only three months old, this horrible disease has shadowed my life with him. When I look at pictures of him standing atop Mount Helena with his Dad, or skiing down a hill with his Dad, or swimming with his Dad, or riding on the tag-along with his Dad, or kayaking across a mountain lake with his Dad, or attending a kiddie birthday party with his Dad, I feel a stab not only of jealousy that my illness has prevented me from joining them, but of pure grief that my son, who will likely be the only child I carry within me and bring into the world, never knew me as I was. I was the one who was supposed to teach him how to ski; I was the one who was supposed to pedal with him up the steep streets of Helena; I was supposed to accompany my boys to the mountain top. I repeat: this wasn’t how it was supposed to be.
It’s not just the fatigue that keeps me from participating either. Because of the sarcoidosis in my bones, my foot is swollen and painful, so much so that I can’t pedal a bike or walk more than a few steps without limping. The weight I’ve gained on prednisone combined with the disease’s effect on my lungs means that getting around the house feels like a hike up a mountain. I’ve been forbidden to enter a swimming pool (too many bacteria for my immune-compromised body) or from hanging around children besides my own (again, too much risk for infection). I can’t drive Andrew to the park to play with him because I can’t drive thanks to the vertigo and dizzy spells that persist because of the neurological involvement of the disease. Even reading to the boy is complicated. I can manage a few pages before the vertigo begins to make the words roil on the page. We listen to kiddie books on tape together, but he prefers the real thing and wanders out of the room after a few minutes.
I repeat to myself a thousand times a day that I am doing the best I can, that I have no choice in the matter. “Do you hug him and love him?” a friend asked me? Yes. “That’s what he really needs from you,” she said. Maybe. ButIneed a lot more from me to feel like I’m involved in my only child’s life. I want him to know the strong, beautiful woman who could carry seventy pounds on her back for a twenty-mile hike. I want him to know the woman who kayaked a hundred miles, who ran up the dozens of steps of Angkor Wat in fierce jungle heat in Cambodia. I want him to know the woman who slept for eight hours (and often a whole lot less) and still had the energy to work, to exercise, to read, to dance. I want him to know the woman who saw the doctor twice a year, not twice a week. I want him to know the woman who traveled around the world. I want him to know me. But I am not me anymore.
I tell myself that I am present in my son’s life, much more so than many other mothers. I do give him hugs and love; I talk to him, and I know that this means something. The other day we talked about Shakespeare (“Why isRomeo and Julieta sad story?), politics (Mommy, why don’t you like George Bush?”), our solar system (“Why does the sun keep burning?”), and the manufacturing of pharmaceuticals (“Mommy, how do they make your medicine?”). If I can drag myself out of bed, I’ll have lunch with him and the nanny. I watch the nannies like a hawk (or as much as a hawk that sleeps three quarters of the day can) and make suggestions for activities. I tell myself I’m not a bad mother—that it doesn’t matter to him who teaches him to ski, swim, and bike—he’ll just know how to do these things when he’s older. I tell myself that he’ll grow into a compassionate man because he’s experienced illness and suffering first-hand. I tell myself a whole passel of things I sometimes, sort of, half-believe. And then, I put my head down and on the closest table or desk or countertop (or, more likely, pillow) and weep because time is passing too quickly. This amazing creature I carried within me next to my heart is growing up and growing away from us—and I am sleeping through it. I am sleeping through the smell of sunshine on his skin; I am sleeping through him rolling across the grass of the soccer field in the middle of a game (I did, however, see the video Jay filmed on the very cool camera his mom got him); I am sleeping through him taking in the panorama of his town from atop a mountain. I am sleeping through him running in the sprinklers, shrieking and giggling as the cold water meets his flushed little body. I want me back. I want these four years back. I want to give my sarcoidosis back to the winds of fate that brought it to me.
I keep my tears from Andrew. I keep them from most people because I am, in many ways, being utterly solipsistic. Iamlucky to have such a wonderful son; Iamlucky to have a husband who has met the challenges of my illness head on, who has risen to the occasion and become the kind of father and partner most women dream of having. Iamlucky to have our two families helping us pay for high quality childcare so Icansleep during the week without worrying too much. Still, I do cry, self-indulgent though it is.