Finding Hope

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There are times like tonight when the reality of my own life is overwhelming. It usually happens when the house is quiet and all the kids are in their beds. It’s at this time of night I have a chance to really think about things. Every day seems to move faster and more furiously toward too many events I cannot understand or control.

In the quiet night air is where anxious and stomach churning thoughts often disrupt what should be a peaceful end to the day. It’s hard to ignore the pain I feel at the end of each day when my body starts to feel the repercussions of any physical activity I may have been a part of. It can get so intense that it feels like punishment for participating in my own life.

It’s when I retire to my own bed earlier than almost every other person my age that I think of my sick little boy sleeping in his own bed. I worry about seizures that may go unheard. I sicken over the knowledge of my own weakness when he is in need. If an emergency arose, would I reach him fast enough? Could I physically do what is necessary if needed? I usually push these thoughts from my head the moment my husband appears in the doorway of our bedroom. “What would I do without him?” A thought of appreciation but also a bit of a morbid one, but a thought most parents with a sick child have frequently. We wonder how the delicate balance of our family could be repaired if we lost one of us. The magnitude of such a reality is frightening.

Often, when I recall my own thoughts of the day, I realize death lingers in my own mind more often than I am willing to admit. I have a chronic disease. My disease is running rampant while I am holding on with any last scrap of optimism I can muster. I wonder how I have any thoughts that even resemble positivity because life certainly hasn’t handed out a fair share of difficulty. It seems like the scale is not tipped in our favor. When one terrible event happens, another is rushing toward us.

The big issue with chronic illness is the “chronic” part of the phrase. It’s definition; constant or having a long duration tells me what kind of hope my son and I have at a release from disease and pain. With incurable disease, the disease never ends and freedoom from it comes only through death. With pain a constant companion to incurable, chronic disease, it isn’t a wonder why my thoughts seem quite morbid. It’s also easy to understand why I’m depressed. There isn’t an end to the pain or side effects of disease…….. there is no end. There are no cures or a remission for us. Medicine and surgery only treat the symptoms and based on the drastic measures we are taking to treat our son’s symptoms, it sometimes doesn’t feel like much of a life at all.

Dreams are put on hold, plans are cancelled, and hope seems lost. But it’s that small word almost at the end of the last sentence that have given strength to so many in worse circumstances than my own. Sometimes it’s the only thing people who feel weary and burdened use to overcome. Hope.

Hope is a word manifested through people, actions, and words. Hope is sometimes given, sometimes it’s stumbled upon, but hope is often the only thing left when everything else feels lost. On those days when I am focused on going back to bed because of the relentless pain, I cling to the hope that tomorrow will be better. I have hope that I can make each day wonderful in spite of it. Hope is the echos of a good deed. Those echos reverberate in my heart, especially in recent times, and have often brought me to tears. From gesures of kind thoughts or prayers to giving generously with no ask of recognition, we have felt more love than we may have felt in a lifetime with no difficulty. We have been humbled by pain but also by love. What a feeling it is to have a breaking heart also feel so full.

When it feels like life is too much, I don’t have to look far to find happiness. It’s the smile on our children’s faces. It’s their endless desire to love and be loved. It’s those who see past our absence from their lives due to the circumstances we can’t control and choose love us anyway.  We feel loved when we finally crouch out of our darkness and into the world and there are people still waiting with open arms.

I have hope when our children display compassion learned through circumstances that ask them to miss out on so many things by no fault of their own. Every time they offer me one of their little hands so they can help me up the stairs or care for me in concern, I have hope. They have compassion learned by trials. They don’t get to do many of the things other kids their age do like play summer T-ball or take swimming lessons. Our abnormal circumstances don’t always allow normality. I make myself sick thinking about what disease takes from everyone in this family. I feel like the little part of their childhood taken away will be the big things when they get older so I hope we offer them other beautiful memories in return. Right now, it’s that quiet time of night when they are asleep and I am awake to think of these things. I think about the smiles on their faces. I think about how much love they have for me regardless of how I feel about myself, or still, how others feel about me. They see me at my worst and still love me and I them. I realize I have much to look forward to tomorrow.

***Look for hope, even of you have to make yourself. Wake up and make the best of the day, even if you require help to do it. This doesn’t mean trying to do things beyond your capabilities, it means trying to smile or laugh, even of you have to spend the day in bed. Love to the fullest of extent, even when you feel like you have nothing left to give. You aren’t guaranteed a long life, you’re not even guaranteed a fair life. Take it from someone who knows how unfair life can be, good things are not promised and someday, the end may seem closer than it has ever felt before. Take time to cry when needed. Don’t expect to feel great about every person or thing that comes into your life. Sometimes you have to work at what’s important and let go of the rest. Most importantly, find what makes today beautiful, I bet it’s closer than you think.***

*d*

My Craft Wife

It’s a pretty helpless feeling watching someone suffer physically and being unable to do anything to make them feel better. You can speak all the encouraging words you know but it doesn’t do a thing for the actual pain. I’ve been witness to the premature wreckage of my mother and more recently, one of my best friends and co-author of this blog.

Mom has a bad back, neck, and joints among a slew of other issues probably exacerbated by the medication she takes for said back, neck, and joints. I can’t pinpoint when she really started to go downhill but I remember her back and neck surgeries starting somewhere when I was in elementary school. Every year afterward seemed to get just a bit worse than the previous. Then she wound up in an emotionally abusive relationship and spent a great deal of time in bed. Depression knocked her down and when she finally removed the abuser—after 8 years—she’d been sedentary for so long I think it had ruined her. What the boyfriend hadn’t robbed from her quality of life, her Degenerative Joint and Disc disease and immobility had helped itself to. He’s been gone for five years and she is only a tiny fraction of the person she used to be.

And it hurts. Her pain is physical and I can’t begin to understand. What I do comprehend is how heartbreaking this has been for all of us. The pain has robbed her of so much. She can’t keep up after her house like she should, she can’t do yard work, she can’t even carry in heavy groceries. She battles depression every single day and every day she’s able to get out of bed, I’m grateful.

With my history or chronic depression, I know how I would react were I in her shoes. I encourage her and try to help when the chaos allows, but the truth is, I’m weak. I couldn’t handle what she deals with every second of her life.

Now I see *d* fighting the same monster and I break inside. I want to be able to help, to make her more comfortable. I know there is nothing I can do for the physical aspect. All I can do is be there to listen and to try to make her laugh. I know she appreciates my efforts but it doesn’t make me any less angry. She’s not even 35 and so much is being taken from her. We’re the same age. I gripe about a sore back from cleaning houses and she just wishes she could clean her own house. It’s not fair. She’s young and a momma to four kids she doesn’t get to enjoy like she should. Still she stays strong because she has to. Because it’s who she is. Because she is braver than I will ever be.

When she vents to me about the pain, the debilitation, I don’t always know what to say. There are only so many ways to say that you’re sorry. And no matter how literally sorry I am, the word isn’t enough. Not for me.

She is my Craft Wife and I am hers, silly nicknames for two women who love Hobby Lobby and the craft of writing. We also love each other, as great friends who share the darkest parts of their hearts with each other, often do. If I could do anything for her, I would take away the pain. But since I can’t, I will let her know that it’s ok if she’s not always strong. It’s ok to feel the anger and sadness and mourn for the things she’s missing out on. It’s alright to feel robbed. She’s handled every curve ball life’s thrown at her with a grace that I can’t begin to emulate and she deserves to fall apart from time to time. She has people who love her who will scrape her back together to face another day. And as long as I’m around, someone who will whisk her away for greasy bar food, conversation, and trips to the Hobby Lobby.

We're a couple of sketchy characters...haha
We’re a couple of sketchy characters…haha

~L~

The Princess Says, “Let Go!”

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Tonight I sat on my porch as storms rolled in and somehow I felt youthful. Maybe it was because I sat barefoot on my porch swing or more so that I was able to sit alone and undisturbed. The absence of little ones vying for my attention or a to-do list felt freeing, if just for a few minutes. It made me miss the days when I would drive to my favorite nature preserve and write in my journal. I was alone and free to use my time for more creative tasks. I would walk to a nice spot, sit with my journal and spend an hour spilling out my thoughts on paper. I miss everything about that sentence. I can’t walk without pain or write very long without discomfort. It’s rather sad for me to think about how much has changed in such a short period of time. It seems like a lifetime between now and then, but in reality it has only been a few short years. I wonder, why did my body decide to start attacking itself? I keep hoping it will stop and this pain can also become part of my past.

Tonight I told my husband that I might have been okay with my diagnoses if they would have come several years down the road and not when I have small children. I have a doctor’s appointment tomorrow and I’m not thinking about what I will be asking the doctor. Instead, I am thinking about how hard it will be to lift my infant daughter in to and out of her car seat several times, shuffling all four kids between a sitter and home, walking a distance to my doctor’s office, and I wonder after all is done, will I have the strength to make it through the rest of the day. I don’t have the option of calling in sick as a mom, I have to keep going, even when my body doesn’t want to go. My husband recently asked me, “If you knew you would have all this pain before we had kids, would you have had four?”

I replied, “I wouldn’t change a thing.”

Isn’t it funny how difficulty often makes us think of hypothetical situations? “If I only knew…..” or “Hindsight is 20/20.” Sure it is but does it matter? Does it help for me to play out future events and allow myself to stress about events that haven’t even occurred? The only thing that can change is now and if I can’t change the past or circumstances that will happen in my future, what am I doing to myself? I must be assembling my own nightmare.

While writing this piece, my daughter called out from her bed, “Mommy! Mommy!” It was difficult to get out of bed and down the hall to her. The RA hurts my joints and the Fibromyalgia hurts the rest. I hobbled down the hall, my head fresh with thoughts of my days sitting in the park and the free feeling I experienced earlier today. She was sitting up in bed and waiting for me. Getting out of my bed was what she anticipated and she expects mommy to come when she calls so I can’t disappoint her just because my body hurts. I sat down on her bed and asked her if she had a bad dream which indeed she had. I kissed her head and started a new dream for her to have, one with a pretty pink princess that dashes away on a pony with a pink mane because pink is my daughter’s favorite color as well as mine. This princess was free of whatever may have caused the bad dream and ready for my daughter to lay down her head and take her on her next big adventure. I was all she needed to forget her nightmare. I underestimated what I can do as a mom and as she closed her eyes, I realized that I didn’t want to be the woman I once was. I too have set off on another adventure and I must redefine my next dream.

I am a mom, a wife, and I am still a writer. I am not famous but I have the privilege of being an author and character in the lives of my children. How lucky am I. Dwelling on the past and worrying about tomorrow robs me of being fully present to write my own future. Yes, it may physically hurt, but it will be beautiful.

~d~