My son's assignment was to write a persuasive letter to his parents, asking if he could keep a dinosaur for a pet. I read his finished letter with pride, noting the newly learned cursive handwriting and clever persuasion he used. It was a typical parenting moment. Then I read, "The dinosaur could take me to school. You are sick and you could take a nap. Also, you might feel better. The dinosaur could catch or make dinner so Dad could come home from work and relax."
My eyes filled with tears, both for my son's thoughtfulness and for the fact that he now has a sick mommy. I don't want my children to think of me in this way, but there it is, in loopy third-grade handwriting.
A year and a half ago, I woke up one morning thinking I had the flu. It never went away. This strange ailment that's taken over my life is called Chronic Fatigue Immune Dysfunction Syndrome (CFIDS). It's an immune system disorder with no known cure. If I rest a lot, take my medication, and try not to overexert, I can manage fairly well most of the time, but this is a different life than the one I previously led.
I have tried to adjust to my new life as a chronically ill person, but I still struggle in my role as a parent. Some days, it's impossible to be the mother I want to be for my two boys.
On days when I wake up still exhausted, I feel like a rotten parent. Tired and aching and wanting only to lie down, I snap at the kids over the most trivial things. I yell at them for making too much noise and scold them too hard for minor infractions.
It all seems to roll off 5-year old Craig like raindrops on a waxed car, but Jamie, 8 years old, is more sensitive to these mom storms. At some point, I scold too severely, and tears well up in his eyes. "We're sorry, Mommy," he whispers, looking at me for reassurance.
His tenderness breaks through my fog of exhaustion and pain. I begin to cry, too, and apologize profusely to the boys, trying to explain how horrible Mommy feels today.
A short while later, they've run off to play, secure in the knowledge that I still love them. I'm not so easily recovered. I swear to myself that I'll never lose it like that again, that I'll hold it together no matter how I'm feeling. If I could just get a little more rest.
While Craig weathers the occasional storms better than Jamie, he has a much tougher time accepting my day-to-day limitations. He often starts out a day by asking, "Mommy, will you have to rest today?" When I feel better and can get off the couch to play with him, he expects me to be my old self, able to go all day from one activity to the next. I try to reason with him, to explain this illness that defies logic. It's hard enough for an adult to understand and way out of range for a 5-year old.
"I don't want you to rest! You promised to come outside with me!" he shouts, somehow thinking that my need for rest is a reflection of caring less for him. After venting his anger, he relents and chooses his video for the day. He zones out staring at the TV, while I try to sleep on the couch, awash in guilt.
Craig's disappointment is distressing, but Jamie's compassion often brings me to tears. Like most eight-year olds, he can be oblivious to my suffering at times, but he's developing a strong sense of empathy. He can usually see when the illness is more than I can bear.
"It's OK, Mom. You just rest. We'll help however we can, right Craig?' he says as he pats my arm. I'm relieved by his understanding and touched by his love. Beneath the surface, I'm also angry that the child has to act like the parent, that I can't do my job and be the mom. I'm angry at this illness for taking away some of my sons' innocence.
I try to hide my distress from them when I'm feeling badly, so as not to upset them, but sometimes it's impossible. How frightening it must be to see the person you've always viewed as invincible seeming to fall apart. I worry constantly about the emotional impact of my illness on my children.
I'm scared that my children may not remember the old me. Craig had just turned four when I became ill. Will he remember when I ran and played with him with abandonment? Or will he just remember the mom who kept saying, "I'm sorry, honey, but I can't. Mommy has to rest now"?
During my darker moments, I'm haunted by thoughts of all that I can't do. I'm horrified that I may never be able to take my kids to Disney World again or to a water park. Will I never again be able to play soccer with them in the yard? What about our plans to introduce the boys to backpacking? I sometimes feel inadequate as a parent because of my limitations.
It's the boys themselves who prove otherwise. When we're playing a game together on the floor or cuddled together watching a movie, I realize that it's not how much I can do that determines what kind of parent I am. It's how much I love them. When they look at me, they don't see a chronically ill person; they just see Mom.
On my worst days, when sitting up is excruciating and I'm wondering how I'll survive a lifetime of this, it's my children who save me. From my black hole of despair, I see my two sweet boys playing together, and my self-absorbed misery is replaced with awe. They remind me that life is too precious to waste it feeling sorry for myself.
Sometimes the love that I feel for them, in the midst of these dark emotions, hits me with the force of an ocean wave. I realize that I have to take care of myself, that I can't give in to despair, because I need to be here physically and emotionally to take care of them and to love them.
Beyond the occasional squalls of fear and anguish, I remain the optimist that I've always been. When I'm feeling more normal, I can see a silver lining among these storm clouds. My boys are developing a healthy sense of empathy and compassion when they help to care for me. They're also learning to help out more around the house instead of expecting me to do everything.
In my former life, I was a high-energy mom, able to juggle job, family, house, and more. Being Super Mom has a dark side of perfectionism and too-high expectations, destined to result in disappointment. I had set the highest of expectations for myself and everyone around me, and we all lived with a high level of stress as a result.
My illness is forcing me to slow down. I know that I can't do it all anymore. With limited stamina, I'm learning to let go of the less important things in my life so I'll have more energy for my family.
After my afternoon nap, still feeling a bit slow and groggy, my son and I cuddle together with a book or play a quiet game. In the old days, that time was often lost in a flurry of must-do activity. Now, in these and other moments with my children, I am acutely aware of all that I have, and I feel grateful.