September and the End of Life

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The red horizon was pressing up against the darkening blue sky. Wispy clouds floated along the cool air. Soon the grass would cool beneath bare feet. Now was the best time to experience the crisp air.

He would never experience another day like this. It was beautiful outside his hosptial window. It was September. My swollen eyes gazed drearily out his window and I imagined myself walking in the courtyard below, my bare feet making circles in the grass and my face toward the sky. The sun would warm my face and dry my tears. I would close my eyes and see the red of light and breathe in as I did many times on the hill outside his house.

I spent many summer days playing outside my grandparent’s house.  I would scuffle up and down the hill littered with stones along the edge of their house and down to the small pool my grandfather purchased for my grandmother. I would frequently put my hot feet into the cold water and my body would involuntarily pull back. I would dance my feet lightly on the water’s surface as I took in my surroundings. This was one of my favorite places to be. A creek ran through the back of the property,  while numerous trees, bushes and flowering plants, mostly Mother’s Day gifts to my grandma, lined the edge of a field. Well manicured grass extended in both directions and behind me stood their little house on the very top of a hill. They sold the house the year of my high school graduation and it has since gone into disrepair. Nevertheless, some of the best memories of childhood still reside there.

I couldn’t return there or escape to the space below so I stared across the sprawling garden and over to the stained glass windows of the chapel. I closed my eyes and wondered if I should enter and fall to my knees before the alter. I would kneel until my knees hurt and my back ached if God would just take this day away. How could something so terrible happen on a day a vision to the contrary? Could I get him away from his bed and out to the garden below? I wanted the sun to warm his face. I wanted him to feel the grass and experience more than the space between the hospital walls before he would no longer have the opportunity.  Maybe I could ask to move his bed next to the window. With multiple lines feeding his veins I knew it was impossible. His fingers were turning blue and his blood pressure was slowly dropping.

I had never before experienced the anticipation of death. It was awful and cruel. I told myself to be brave. I would stand at the window or wander down the hall in a futile attempt to collect myself and accept what was happening. I tried to fool myself into thinking I had been through plenty of hardship and could be an example of strength. My eyes would flit around the shocked faces surrounding his bed and I accepted the weakness we all shared. Every face was distraught and terrified. Many could hardly speak. I did not want to accept it but I pleaded for the day to end. My mind looped, “I can’t do this.” Then I would try to rationalize my thoughts so I could quickly return to his bedside. We had spent several hours watching him try desperately to acknowledge our presence despite his own agony. We knew the inevitable finish to this normally beautiful day was creeping closer with every tick of the clock. He stopped trying to speak and stopped opening his eyes. The clock grew louder and it became difficult to ignore amidst the deafening silence.

The awareness of death was strange knowledge. My grandmother paced the halls and nervously fidgeted. She could hardly stand to stay in the room and watch over sixty years of her life slip away. We prayed,  shared stories, and told him we would be okay. My mom tenderly cared for her father and only briefly left his side. She undoubtedly suppressed her own fear to make sure his hands were held, he was comfortable, and aware of her love. I wondered how someone who always took up such a large part of my life could be reduced to a small space aloft a hospital bed. We sat in a circle surrounding his bed, holding his hands, touching his feet, and crying until my mom raised her head from his chest and sad, “He’s gone.” It felt like we all exhaled simultaneously in disbelief and our breath lingered stale in the room. It was over and so was more than eighty years of a meaningful life. A part of me also died with my grandfather as happens with all those who share our lives. It was sad to think that his memories, experiences, and wisdom just died with him.

We stayed for an hour. My grandma started calling loved ones shortly after his passing. Her busy hands didn’t make a happy heart but it helped her deal with her new reality. I kissed his forehead and held his hand while he was still warm. His head was moist from fever. I told him that I loved him and hoped he would somehow hear me. This was one of the most defining losses in my life.

I have lost others I have loved. My uncle (my mom’s brother) died unexpectedly three years prior as did my paternal grandfather, but I was very close to he and my grandmother. I spent a great deal of time at their home and it became a place of refuge for me. That comfort was now broken and so was my grandma.

The day he died was gorgeous. I often try to imagine him rising above his bed and lingering in that courtyard outside his window. Maybe he went into the chapel and prayed for all of us still lingering beside his broken body. Maybe in our sadness he was freed and as joyful as he had ever been. Death is an awful truth none of us can avoid or understand until we are looking out to the broken faces surrounding our own deathbed. Maybe I too will be released from life in a hospital bed like my grandpa or at home like my uncle but it really doesn’t matter. What matters is who will surround us when it is time. I would be so blessed to pass like my grandpa. It was awful for those who joined him on his last day but he did not face it alone. The love of family gathered with him on that beautiful September day and remained to his earthly end. My grandma recently told me that she is starting to forget things about my grandpa. I told her it is more important to remember how he made her feel. It is hard to forget the warmth of a loved one.

This was the first time I had been at another’s passing. On the drive to the hospital I had no doubt what I would witness and I knew it would change me. I returned home that night eager to embrace my family. I had an earnest desire to enjoy those I love because my time with my grandpa wasn’t long enough. I wanted to keep everyone within my reach but it didn’t last. I also began to forget and a part of me has yet to accept. It will eventually sink in and I will inescapably be in the throes of grief. For now, I am reminding myself of how fast a life ended on that September day. Today I try to enjoy what time I have been given. I am sure the morning he walked into the hospital for surgery, he didn’t realize he would never leave. He had come in the doors and felt the last breeze on his face, slept his last night in his own bed, and took the last steps to a completion of life. He was a faithful man and I know there was more for him beyond his death but he didn’t want to die. Most people don’t. There is always more to do and another life to touch. There are more gorgeous days to see and grass begging to be tread upon. It is time for me to stop looking out the window and take in life.

*d*

What Special Needs Parents Want You to Know

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It is often hard for a special needs parent to be honest. We are trying everyday to be strong for our children and those around us. Whether you are close to a special needs family or not, here are a few things a special needs parent would like you to know.

We feel alone.
Isolation for special needs parents is real. When things get difficult, many “friends” disappear because they say the situation is “too hard to watch.” As nice as this sounds, we know we are being “politely” avoided and thus, removed from the lives of these so-called friends.
Special needs parents are also in unique situations. We know others will not intimately know the details of our child’s diagnosis or abilities and this can lead to feelings of isolation. This is exaggerated by other’s unwillingness to learn the basics of the situation.
We need true friends who are willing to stick by us.

We feel left out.
We appreciate hearing about your fun over-night stay or the family vacation but those dreams have quickly faded for us. Don’t mistake our lack of outings with the lack of desire to have them.  Sometimes it is difficult to ask for help. We find ourselves looked over because it is often assumed that we “have too much on our plate.” Let us decide what is too much for us. We are still capable and have the desire to help others, go out with friends, or be included in events/outings.

Money is always an issue.
It is rare to find a special needs family that does not struggle to pay for the rotating door of medical expenses and/or special equipment that is sometimes needed. Neither is cheap and getting assistance can be difficult.

We take your opinions into consideration but we know best.
Real solutions come when time and effort go into a problem. We have logged in plenty of both so sometimes keep the opinions to a minimum and just offer a helping hand.

Teach your children tolerance.
Some special needs individuals do not have the ability to demand tolerance but their loved ones will. If your child teases or bullies our children, expect to hear from us. We are used to fighting for our children and most of us will not hesitate to speak up.

Do not assume our child will “grow out of it” so stop asking.
This is by far the most annoying question special needs parents are asked. We heard this question by nearly everyone when our son was  diagnosed. These well meaning people would ask and seemed to wait tentatively for validation . For them to be okay with the diagnosis, it has to be short-term? No matter the term of the diagnosis, families are dealing with the here and now.

We are upset when you are intolerant of our children, especially for a short period of time.

We are tired.
A great deal of diagnoses carry the fine print of sleep deprivation. Be considerate when discussing your poor night of sleep. Many special needs parents are on years of sleep deprivation. As a result we are often feeling the physical and mental repercussions.

We don’t have all the answers.
We are still learning and every day brings new challenges. We research and ask as many questions as we can but usually a new question follows a solution. Be patient with us, most of us are doing the best we can.

Stop pointing out the negative.
We are well aware of our child’s short-comings. We don’t appreciate pointing out our child’s faults any more than a typical parent.

We need support.
We may not always say it, be we need it. If it sounds like we may need help, we probably do.

Offer to “do the hard work.”
These tasks may require you to feel uncomfortable or lose sleep but these are the things we will not soon forget.

Help us get away.
Most of us live in a constant state of chaos. No one can withstand this type of existence without feeling a little frayed. Stepping in for any amount of time makes a world of difference.

We notice when you stop asking about our children.
Our children may not be on the honor roll or in sports like typical kids but they still have accomplishments. Acknowledge the effort these kids make to do what most typical children take for granted. I guarantee they have worked on these tasks for a very long time.

We need to vent.
We love and are thankful for the opportunity to raise these special children but it is a stressful job. It can be “depressing” for you to hear but this is our reality and we can’t escape it. Please allow us a place to talk honestly and unload. And we want to do the same for you.

Going out in public is hard.
We are on guard in public places. We are aware of whispers and stares. We also know we have the right to public space. Most of us take others into consideration when situations become difficult, please do the same.

Please do not make us feel guilty about our child’s behavioral issues and DO NOT say, “He was good for me until you walked in the door.” Parents are a safe place for kids to fall so it is not atypical for a child to misbehave around parents and caregivers.

Special needs parenting changes the heart and mind. These parents can be the most empathic and patient people you will encounter. They often face a great deal of difficulty with a smile but they are hurting somewhere inside. There is a real struggle for these parents. The guilt of not knowing or doing enough is constant. They often feel like things will never get better and yearn for friendships that will withstand. Most only wish to change the world for the better of their children. We want others to see the true gift of the special needs child.

*d*

Granny

In response to the post “Grandmas,” *d* is right. We’re both very lucky to have the love and influence of such wonderful women in our lives.

For me, my grandmother, or Granny, is all the more special because she raised me. I lived with her from second grade until I was 20. To me, she’s always played a dual role of mom and grandma. Not that my mom isn’t around. That’s a complex story for another blog.

I realize how lucky I am to have grown up with Granny. She worked at a restaurant for 25 years, eventually earning a place in management, but we never had a lot. We always had enough, but nothing over-the-top. I know if I’d asked for something, she’d have done her best to get it for me because that’s the kind of lady she is. But I rarely asked. Even back then I was content to wear my clothes from Goodwill and Kmart and never expected an overpriced sweatshirt from Aeropostale or American Eagle, or Nike shoes and Levi jeans. I was happy with what I had.

While I didn’t recognize it at the time, I can look back and see just how special and valuable her guidance was. She and my grandfather had divorced before I was born and he died around the time that I was a toddler. She never had another man in her life after her marriage to him ended. She was content with her own company. She owned her home and worked hard to pay the bills and take care of me, all the while, squirreling away money.

I learned from her a simpler way to live. To be good to other people. To appreciate my family, as broken and scattered as it is.

I’d like to say that I followed exactly in her footsteps, but I am my mother’s daughter and my daddy issues coupled with a stubborn wild streak ensured that I would make my own path strewn with men and debt and heartache. I still live simply and prefer shopping at thrift and dollar stores to the big department stores. I respect my elders and have an innate desire to help others. I’m grateful to be the person I am and even more grateful to Granny for giving me such a strong example to follow.

As an adult, I find myself wanting more for myself than I did as a kid. I’ve been in the workforce for 17 years and I know what money can do. I still could care less about name brand clothes. I’m dreaming bigger. I want to fix up the house we’re in now, sell it, and buy something bigger, in the country. This has probably always been a goal for me but now, as Granny ages and keeping her in her house trailer has become increasingly difficult, I have an additional objective. I want someplace big enough where I can have Granny live with us. I know she doesn’t want to give up her independence but if we can obtain a place big enough that none of us are uncomfortable, that might help her relinquish living alone. I want her where I know she’s safe, where I know she’s fed, and where I can enjoy her company. Maybe that’s selfish. I don’t know.

That dream is why I keep trying. Despite pitfall after pitfall, and often debilitating depression, I’ve never given up that dream. It’s that dot on the horizon I keep moving toward, doing everything I know how to do to bring it closer and into focus.

Grandmas

*My friend and I have a deep love and appreciation for our grandmothers. Here is my contribution to jointly acknowledge these lovely women.*

Dear Grandma:

Your life is a story of subtle grace. This is a rare quality and one I someday hope to acquire. I am afraid I will never achieve the grace and wisdom I have found in you.

You have fought many battles with quiet faith. When my life feels like it is out of control, I remind myself of how you patiently handled each difficulty with a humble spirit. You didn’t complain about the injustice you were handed but remained thankful for the blessings of each experience. It is uncommon to know one who speaks not of her own pain but asks how to heal another. In a world full of people who ask to put their own needs before all others, you gladly set aside your own. You exemplified this by giving your all to those around you. You gave freely of your possessions, home and especially your love.

When I need to be reminded of kindness left in the world, I recall your life in opposition to the negativity. You try to see the purpose in the worst of things but when there is no obvious reason, you have faith that someday you will grasp what you do not understand. As a little girl, I watched you quietly kneel beside your bed in evening prayer and recently listened to your prayer the night grandpa died, thankful for your many years of marriage. You have given me lifetime of examples of faith.

As I age, I grow a deeper appreciation of you and regret that this appreciation wasn’t sooner realized. Maybe then I could have taken time to talk a little longer, consume your wisdom and further enrich my life just by being a part of yours. You are older than I remember in my childhood but you are not forgotten. You are just as beautiful and a true treasure in my life. You allowed me to grow in my own time and navigate my mistakes even when you had the wisdom to correct me. You gently guided me and encouraged the best decision but always offered a hand when I faltered.

Thank you Grandma, for living by example. I will continue to follow in your footsteps but I know I will always remain small in your shadow.

Love,

*d*

Open Doors and Benadryl

There are days I think I have this all figured out and I know what I’m supposed to do, what I’m supposed to be when I grow up. Then there are days like today, and days like last Friday that tell me I’m completely wrong about having a clue.
The new year is a fresh start for a lot of people. Not me. I spend all year scrutinizing my choices, making resolutions I never keep, feeling like I need to make my life better. The new year is just more of the same. There is no discernible difference in my anxiety levels, my drive or lack thereof, in say, June compared to December and the beginning of January. It’s all the same. One chaotic “What the hell am I gonna do?”
Very recently, I considered taking my cleaning job and making it my “real” job. What I mean by that is promoting my cleaning service and treating it like a small business instead of a side job while I work on my writing. I’ve been looking for a full-time job or a decent paying part-time gig, so I’m in the market to work more than I currently am but I’m not having much luck landing an interview, let alone a job. I’m good at the cleaning thing and I have no doubt that if I really threw myself into building a business around it, I could get enough jobs to pay the bills and then some. Then I think about the downsides.
Though I excel at pleasing my current clients with excellent customer service and perfection driven cleanliness, the work is hard. It’s downright exhausting in some cases. I still want to write in my free time and I’m afraid that if I take on several more jobs, I’ll be too tired. Not like now—how I’m always so wide awake. *YAAAAAAAWN*
Then there’s the reality that I try to ignore and that’s that I have terrible allergies to pretty much everything that a cleaning job has to offer: dust and pet dander. And though it’s not an allergy, I have sensitivity to strong cleaners, probably because my sinuses are already inflamed and downright pissed off at me just from everyday breathing. I suffer through every day and most of my jobs aren’t very sneeze inducing, at least not anymore. I have the dust under control in almost every case. It’s that one case where there is absolutely NOTHING I can do to keep the dust at bay that makes me reconsider my business venture. I assure you that it’s not just the dust.
Today, I almost saw the junk of the son of my ultra-dusty client. I’d gone around and poured BLUE toilet bowl cleaner into all four toilets and let it sit. After some time, I began to clean them. When I got back to the son’s toilet, he was standing there, peeing, looking out the window, with the door open.
“Oh, Geez!” I said, turning quickly back the way I’d come. “Sorry ‘bout that.”
Later, in the kitchen, he said, “Sorry. I forgot you were here today.”
I assured him it was fine and really it was. I didn’t actually get a glimpse of anything. I also understood that with the holiday, he could’ve easily forgotten what day it was. I felt like it was Saturday all day today, when in fact, it’s definitely Friday. I can only assume that he didn’t look into the toilet bowl to aim and see the blue cleaner, put two and two together, and realize I was there. Or perhaps he was too tired to notice.
This near eyeful isn’t really the issue. Beyond the uncontrollable dust, the job is very physically taxing as I clean at a breakneck speed for four hours just so I’m not cheating myself out of money. I finished almost a half hour late today because everyone was home and my routine was knocked off kilter. That’s time I won’t be paid for. On top of never actually finishing in the agreed upon four hours, it’s not really worth the 30 minute drive or the level of cleaning I have to do every week. The amount of work I put into this job is the same as I devote to my monthly jobs that take from four to six hours. Last week, after spending a full 8 hours there helping to prepare for a holiday family visit, I left with a sore throat, cough, and a splotchy rash down my neck, not to mention, a gargle-worthy amount of phlegm. I took two Benadryl and went to bed pretty early that night. These are the things that make me consider that my future might not be in the cleaning industry.
I can’t load myself down with exhausting jobs if I want to be able to pursue writing at the same time. I also can’t do a job that literally makes me sick. I feel like signing up for more jobs potentially like this one could be bad for my health. Getting a sinus infection every month because I expose myself to what I know is bad for me, well, that’s just crazy. What’s really disappointing is that I know I’d be good at it. I know I’d make a name for myself cleaning.
Such is the internal battle waging as of late. If it’s not this, it’ll be something else. There is no peace in my mind. I suppose that’s one significant reason why I write. That, and it doesn’t make me sneeze.

~L~

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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