Knee High in a Rant

Sometimes when I have a difficult day  I imagine sitting in front of a tall window dressed in sheer covering. The sun is amber and the wind is trickling in the crack of the window to disturb the sheer. I imagine the blue sky beyond and feel the warm breeze rise up my feet. It pulls at me and dares me to chase. I could run barefoot until I could run no longer. I would then lay back and watch the clouds float further than I could ever go. It would be quiet, it would be peace.

I love nature but find it hard to leave the comfort of my house. It has been hard to handle all my children outside the home with my special needs son. I never know when and what may set him off so it is less anxious for us both to remain here. I save my dreams for days when I have helping hands. There are also dreams I may never fulfill. These dreams are simple but it feels like they were taken from us by a thief. Taken by a greedy disease with it’s fear and unpredictability. I want a life back and it will never happen. I can try to be optimistic, but it won’t change the facts. I grieved for the life my son will never have and now I grieve for the life we have left behind. It sounds selfish but it’s true. Disease has a grieving process very similar to death. Maybe I have yet to reach acceptance.

This window I dream about is something I have been escaping to since I was a child. I had found that I had the ability to escape in my mind when my body could not. I hope my son can figure out how to do the same. I hope he can find a place far from his sometimes sad reality. He will never know a day without medicine. He may never understand why he must live with this burden and I may never be able to explain it to him. He just doesn’t understand but it doesn’t mean he doesn’t struggle because I assure you he does. That is a hard pill to swallow, even for a faithful person. He has purpose and meaning. His life has already made differences, although he may never know.

For all he is, it makes my heart hurt to know that I cannot provide him all that he deserves. I can’t provide him a beautiful day in the park if his disease won’t allow me the ability to help him enjoy it. I am angry that so much has been taken from all of us. I have lost my identity in this disease right along with him. I didn’t want it to take over my life, it just happened. I have to think about it every day. I think about it the four times a day he gets his medicine. I think about it every time he gets on a bus and isn’t able to attend school with the peers in our hometown. I will think about it every time a school milestone occurs and he won’t be asked to participate. Sadly I can’t carry this for him. I can only grab his hand and help him along and when it’s really bad, I can carry him.  Mostly, I wish I could take it away.

I feel removed from this life in a lot ways so please excuse me when I seem put off by the problems I wish I had and forgive me if I can’t be more sympathetic. I am busy staring out my window. My mind is too busy running out the window and toward the sun and imagining a normal existence.

*d*

Wrapped in Rust

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*

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