In four hours I will hear the familiar rumble of his work car driving through the alleyway and to his parking spot. My husband drives a car given to us by my late grandfather. We inherited what my grandfather referred to as “the sweetheart of the highway.” She is over twenty five years old and past her prime. The cloth headliner is falling down and frayed, the paint is fading, it has crank windows, my husband gets only a.m. radio, and I am pretty certain the heater only reaches luke-warm. It has been vandalized twice (egged and spray pained orange) and the backside of many jokes, but it is paid off. I have asked him to consider purchasing another vehicle once we receive our tax return and pay off our van. I worry because the gas gage plays hopscotch between E and F and we never really know how much gas is in the tank.  The only thing new on the “sweetheart” is her tires. My husband reminds me of how much money we will have once the van is paid in full and how much debt we are still trying to reduce. So he may be driving her for the next twenty five years.

I imagine my husband has been taught to see the value in something when no one else does or he knows we have no choice but to keep it. I know how hard we struggle. Each month it gets harder to pay bills and have enough remaining to purchase groceries. We both have decided to make the necessary sacrifices that allow me to stay home with the children. My son’s medical condition is multifaceted and complex. When we discussed if I should re-enter the workforce, choosing care for him would not be as easy. A caregiver would have to be trained in rescue techniques and medication. After weighing the cost of daycare for multiple children and working, we wouldn’t be making enough to sacrifice our peace of mind.

I did work part-time every weekend for five years. I really enjoyed my job but my son’s health was failing and we both knew it was time for me to care for him permanently. He has since stabilized but spending the past two years at home has been lonely. I know I contribute to our household by caring for the family but brining home a paycheck gave me a sense of accomplishment. I also had a place to socialize and  the opportunity to feel like more than just “Mom.” I had a name and I had a life. Being a parent to a special needs child is lonely. Rarely does anyone care to understand what life is really like for us. We seldomly go out and rarely get asked to do so. Babysitters, like caregivers, are also hard to find.  In addition, we are always tired. I haven’t slept for more than four straight hours in over seven years. The deprivation plays with your head and the loneliness gets to your heart.

I spend a lot of time at home. I miss having an escape from dirty diapers, screaming, autistic meltdowns, and noise. I miss conversations with people my own age. I could make plans after work or do some shopping on the way home. Sometimes when I talk about my situation, others will say, “Don’t forget to make time for yourself.” That is a nice thought but a more productive approach would be to ask, “How can I help?” But with the isolation of my existance comes  infrequent conversations.

So I wait. I wait for my husband in his little white “sweetheart.” I anticipate her rumbling up the alley and a breath of relief escapes from my mouth. I wait for his conversations. I wait for his guidance. I wait for his help. At that moment my lonliness fades away.

It’s funny to think my hero, the Prince Charming of my girlhood dreams, comes calling in a rusty old piece of machinery. He cares not of the eloquence of his arrival but about what he does once he is here. He fills in the empty parts of my heart and the loneliness of my day. He understands when I greet him at the door with my tousled hair and can still imagine what I looked like when I readied myself that morning. He doesn’t worry when I cry about the life I feel like I have left behind. He listens and asks, “What can I do to help?”

My son, like my husband is wrapped in a rough package. My husband would certainly not get a second glance in his run-down stallion. My son sometimes gets a second look, but often for his differences. He is wrapped in a disease that often covers the treasure he is inside. It is nice to know that those with true character often hide it inside.

*d*