Tag: mothering

Please Come Back

​Six years later and I still have anxiety whenever someone I love leaves me for anywhere, for any amount of time.  Please be safe, I whisper.  Please don’t go.  

Six years later and I still have to practice breathing again whenever I hear an ambulance siren.  Whenever I drive by a crash.  Whenever I hear of a horror.  If my daughter, 700 miles away does not immediately respond to our group texts with me and my other children, I have a creeping panic until she writes, “Omg, Mom.  I’m in class.”  Even when I know for sure she’s in class.

Six years later and I hate winter.  I hate its lifelessness, its starkness, its death and especially its darkness.  I’m frightened of the dark now.  Of the panic attacks and the memories and the embers of the shattered dreams that glow in the darkness.

Six years later and I love to excess, smothering excess.  Six years later and I am cold as fuck.  The same heart that burns like wildfire is walled in ice, ferociously protective of those already inside, dispassionately protective of itself.  Six years later and still I’m terrified of what’s to come and who’s to go and where we will all be in the next six years.  

My oldest daughter suffers many of the same anxieties.  She faces them.  I hide from them.   I hide behind my keyboard.  I hide in destructive relationships where screaming is the norm because screaming at least allows me to feel something.  I hide in denial from myself.  My daughter accused me a month or so ago of transferring all my anxiety to my house as I, room by room, made excessive changes.  Ripping out carpets, redoing floors.  Buying new furniture and new throw rugs and lamps and a new washer and dryer and a car.  Repairing unused patios and lights and tossing memories out in the dumpster.  

 You’re going crazy, she told me.  You aren’t happy.  I argued with her then.  I told her I was so very happy.  Look at me!  I’m so happy!  I’m finally concentrating on something else besides just caring for Damon; I’m making my surroundings beautiful and colorful and bright.  What gives you the right to tell me I’m not happy?  

Concentrate on yourself, she answered quietly.  You are concentrating on everything but you.

You need to care for yourself like you care for Damon.

I laughed at her. I rolled my eyes at the ridiculousness of what she was saying.  But I began to question. I questioned more a few days later when someone, a total stranger, said he saw a deep sadness in me, making him want to make me happy. I smiled sweetly. I took his offered arm and used it to push him away. 

By the time my daughter left to go back to her apartment, I knew she was right.  

Six years later and I work up the courage to look in the mirror. Six years of too much sadness and too many deaths pounding on a psyche already injured from years of emotional abuse has left me broken.

I know I need to make changes.  I know I am stagnating.  I must face the fact that I am not immortal, and can’t merely keep putting one foot in front of the other to only survive each day. I will need to take an active role in my own life.  

As I gaze at my reflection I realize I don’t just miss that girl who disappeared six years ago, but the one who disappeared many, many years before that.  The girl who had no story.  The girl who was able to twirl, unhinged, like a ballerina and throw caution to the wind.  And live.  

I need to bring her back, whatever it takes.  I need to bring her back. 

Six years later and I must now endure another crash, but this one inside my head and my heart. A complete demolition.  I know I have to break down before I build up. I need to rip apart that diseased part of my mind that is too frightened to move on. I know I need to tell the whole story.  I know I must face truths that are uncomfortable. I know I will leave some destruction in my path, and as a tornado doesn’t wait around to clean up its mess, I will not hang around to clean up the toxicity I toss out of my life.  

I know the people who love me will continue to love me and I know my inner circle is all I really need.  I know my Facebook friends are like ghosts I can put my hand through; they do not really even exist.  It doesn’t matter what they think any more. I write for me.

Six years later and I now know I need to care for two people going forward, not just one. I may never rid myself of my acquired anxieties, but I need to take care of them, not hide from them, with the same compassion and gentle understanding, love, and patience I use to take care of Damon. 

For six years I have been on my own form of life support, but the equipment has been flawed, and I have been barely breathing.  I know I must breathe again totally on my own…deep, deep breaths that fill up my lungs and make me giddy with too much oxygen.  I know I must grasp tightly onto offered fleeting moments of happiness, of truths, of passion, of goodness because without them my soul will completely wither away.  

Six years later and I know I somehow have to make this journey.

Stay safe, I whisper to myself.  Please come back.
 

I Love You Both

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Today marks five years. Oddly, it’s the day I wanted to fast-forward to five years ago when I thought by now normal would have been achieved and the day-to-day would be far behind. Wait and see, I said then. Everything will be all better in five years. This will just be a blip in the radar.

The blip turned into an all-consuming monsoon; the sprint turned into a marathon; the journey of hope, love, and faith often turned into depression and frustration and a sadness that no sense of humor could ever completely cover.

Five years later, I hide it well. I laugh a lot. My closest friends and some family members sometimes forget I struggle. Sometimes I even forget I struggle. Everything has become so normal. This is our life now. The lack of normal has become normal.

Somewhere along the way I guess I somehow came to terms of some sort with all of it. The tears don’t come as easily any more. But I’ve never dealt with the grief, and I am terrified of that. Just as I never dealt with the grief of losing my dad three years later. At some point it all may crush me. But we have to move forward, I guess. We have no choice than to move forward. For his sake. So the sadness is swept under the rug inside my head and I only concentrate on today.

I love the boy I have and the boy I had fades into the distance.

Sometimes I forget how deep his voice was or how strong his arms were or how much he helped me. Sometimes I forget the goofy things he did to make me laugh so hard my stomach hurt. Sometimes I forget what a good son he was and a good friend to his friends. Sometimes I forget life even existed before his head hit the stone wall.

We were a team then, but we are a stronger team now. Don’t tell Dad, he’d plead with me then over a damaged car part or a broken computer or another waterlogged phone. Only if you don’t tell him I hit the garage again, I’d answer. He never tattled on his sisters, but he couldn’t lie to me when I’d ask about something he had done, easily getting himself into trouble for every first-time infraction. We talk now about the time he and his best friend chopped down a tree in the state park. Or set off about 30 fireworks at once in a wheel barrow in our backyard. But all those events are just stories now, stories from another time, with another boy.

I’m ok with that, I thought. I’m okay because I have a new son, a new purpose now. I’m okay I thought, until yesterday when my daughter sent me a video she had compiled a few years back of a few years further back and I saw him today as he was then and the pain came fast….searing pain…. and I saw him and I missed the him that was him, and the now broken pieces of my heart, only lightly glued back together, came crashing down in a heap.

It’s impossible to explain how  a mother’s love can separate into two for the same person….he’s here but he’s not, but he is, and I’m so grateful, and so love him, but he’s no longer here and I miss who he was and who he could have become….at the same time. I miss the dreams I had for him and the future I had for myself. Sometimes it makes no sense to me….my own brain can’t handle it. Sometimes it just wears me down and out.

I’m tired. I’m alone. I battle by myself. I am angry and I am bitter. I don’t trust most of the medical profession, especially in this area we live, because throughout the last five years they didn’t trust me. So many hurt us more than helped us, making us travel two to three hours away to fix what they erred. Case workers and managers have been a step up from worthless in our situation because no one ever talked to us about finding help or what is available or where we could go for advice or assistance. We had to find our own way, traveling down streets and roads without any sort of GPS, just to understand what help is available for someone with a brain injury, how to fight insurance, and that, yes, progress does continue past the two year mark, well into the five year mark. This part of the journey, the advocating and the fighting and the learning the system, has been even more exhausting than the caregiving. We should have had help with this.

The boy I have today is sweet and loving and kind and funny and makes everyone love him with all their heart, the first time they meet him. I am beyond grateful for him. You were touched by angels, I tell him. He lights up my world.

With his first, “Hello. What’s your name?” he creates smiles no matter where we are. He’s intelligent. He can figure things out when he’s not too tired or foggy. He loves people; he loves visitors; he still loves the friends who no longer show up. I love this boy more than I loved the first. I have to. I convince myself he will be okay when I’m gone. I convince myself that no one will ever make fun of him, or take advantage of him, or abuse him in any way. I have to. But in today’s environment I’m no longer sure.

In the past five years, I have learned that it’s okay to cry, it’s okay to laugh, it’s okay to hide my emotions or wear them on my sleeve. I have learned to be more honest in my thoughts and my feelings. I have learned how to dig deep to find my center, my core, my strength and hold on tight. I have learned I can love the same person, who isn’t the same person, one a memory, one in the present, with different types of unconditional love. I have learned that love really does heal and mother usually always knows best.

I have learned that the strongest weapon in any arsenal is the gift or the power of love. 

Thank you for being such a huge part of Damon’s Army for the past five years. With your help, we will move through the next five. In five more years, maybe this will all have been just a blip in the radar.

Pretending Life

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“We spend a lot of our days pretending,” he wrote to me, in response to my questions regarding his daughter’s unrecoverable traumatic brain injury.
“You know how that is.”

He didn’t know me, but he knew me. Better than I knew me.

I felt my sharp intake of breath, as though my mask had been ripped off, and I watched, frozen, as my well-built facade cracked and then crumbled into pieces on the floor around me, until I was totally exposed, totally vulnerable to the one person I’ve pretended to the most for the past five years. The most important person from whom I’ve hidden every emotion, every lost hope, every broken dream, every frustration, and every heartache.

Me.

“Yes, you know how that is, don’t you?” I asked myself not without anger. I tried to be honest with myself for a split second, before I began to quickly rebuild that facade, brick by brick.

I spend much of my days pretending that caring for someone 24 hours a day is normal. That my son will find his abilities just around the corner. That all is always well. That others actually care and it’s just today they are not showing up, physically or emotionally; surely they will be here tomorrow.

I pretend that I am not exhausted. That my daddy did not die. That my mom is well.
I pretend that I am happy and present.

I pretend that each punch from the universe just makes me stronger and each knife in my heart makes me care more.

I pretend that as we are on our way out the door, on time, an “oops, Mom, I need a change” is just part of everyone’s normal day with their typical 22-year-old, requiring a complete change of clothes, after a transfer back to bed from wheelchair, to remove shoes and braces and all clothes and then having to reverse the entire procedure until he is back on his wheelchair, ready again to leave, now 20 minutes late for that appointment.

I pretend that your “God only gives us what we can handle” or “God has a plan” doesn’t  make me want to shake you and scream uncontrollably.

I pretend those little pills I take to help me sleep at night actually do help me relax and that I bounce out of bed at 6:15 am, eager and happy to face the world, on yet another groundhog day.

And no, your oils and aromatherapy and herbs will not help me with this “stress”. I pretend to be sweet when I say no, thanks.

I pretend that you do not judge me or my daughters, because I pretend you know better, are able to comprehend what we have all endured, or endure,  even without trying on our shoes, let alone taking a few steps in them.

I smile. I laugh. I have a sense of humor that allows me to poke fun at me. I also have a vault inside my head where I store all the grief and pain and a massive cover-up as to my reality.

“Who are you most afraid of?” I was asked the other day over a delicious Starbucks latte, decaf with nonfat milk…a hint of vanilla, pretending to fit into this chic setting, as I broke down explaining my pretense, my sadness, my fear of being “found out”.

“Me,” I replied, not even shocking myself at my answer. “I’m most afraid of becoming vulnerable to me. I’m afraid of the vault exploding with that last weight I try to shove inside and then what will become of me or Damon or the girls? Who will hold up our fort?”

Maybe you need professional help.

Maybe I do. But I’m terrified to face the contents of that vault. Terrified of the realities. The what-ifs the what-if-it-nevers.

In the first few days when they told me my son would die, or be in nothing more than a vegetative state in the best case scenario, I refused to look over that edge into their darkness, not because I was strong, but because I knew I was too weak to face their reality. So I pretended they were wrong. I pretended he’d get well again. I pretended I knew best.

I still pretend to be strong.  I pretend a cure is right around the corner. I pretend that your actions or words or a dire prognosis doesn’t hurt me.  I pretend that all of our lives are absolutely fine, and the aftershocks that just don’t stop, don’t exist.

It’s just easier to pretend, isn’t it?  As long as the vault stays sealed.

“You know how it is.”

In Response to Another Heartbroken Mother

 

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Photo credit http://www.thehopeline.com

No it’s not fair. It’s not what you wanted. It’s not how your life should be. You ache all the time. Physically and emotionally. And the pain never goes away. People are there for you at first, but they go on with their own lives because of course they can, and that’s ok, but it hurts when they forget you and it hurts worse when they judge you later…your decisions and your choices…. from their pedestal of normalcy.

No matter how close they once were to you, even family members, they will never fathom your life and how affected you are by the day to day to day, and they will never see that your smile has dimmed and your heart always hurts. They will judge you as though you are the same you, the you you once were, or judge you as if they were in your shoes – which they are not because they cannot even imagine the horror and the hope, and God willing, never will. They convince themselves that you are the same, but you are changed and they are not.   How dare they judge the you who you are now?  The you who is crumbing inside. How dare they question your behavior in a life for which nobody is ever equipped to handle?

You smile and say I’m fine because you don’t want to burden them with the burden you live.  And they accept that you are fine because you say so and they don’t question your fineness because then they may have to deal with it, so they think of you as fine.  And by thinking of you as fine they feel the right to judge you as if you were fine, so they make no provisions for the you who is not at all fine.  They give you no leeway, instead they walk away and talk away and stop calling because you are no longer fun or interesting or the life of the party.

And you hurt more and feel more and think more.  You see hate and unkindness and it affects you more deeply because you live day to day with the reminder of the fragility of life. Their actions stab you in a heart that’s already broken.  A heart that’s already bitter.  Their stabs, although pinpricks compared to the original slashing, renew your pain and remind you all over again that your life is so different and not at all what you expected it to be.

But you will meet others.  You meet others who feel, who didn’t know you then and can accept you now. You now being the only you they’ll ever know.  So many will lift you up and make you laugh and will truly want to know the you behind the mask of “I’m fine”.  You will see the good of humanity as in the time the small white guy and the large black guy took it completely upon themselves, not knowing you or each other, and stopped the flow of mob traffic leaving the concert, so your child could exit in his wheelchair, the littler guy ahead tapping shoulders to move out of the way, the bigger one clearing the path right in front of you, making you feel like a running back with the best blockers in the business.  You will feel the smiles of humanity when someone takes the time to stop you and ask for your story, not afraid to hear the truth, and then hugs you because no words are ever enough.  You will feel the good as you’ve never know it to exist. And this is what you need to concentrate on.  What you need to believe in.

The goodness. The light.  The hope.  And the love.  Especially the love.  It still exists in your new world, but to see it you need to feel it, you need to open yourself up to it and try to dilute the bitterness of how you feel, of what you feel.  You need to let go of that other life, hard as it is, because that other life is nothing more than a memory and no longer can exist for you.  You need to let go of the people who let go of you and let go of the old dreams and the old plans for a future that has drastically changed.  You need to somehow accept.  To somehow move on.  To somehow move forward and create new dreams and a new life and look at a new future.  You need to make the new future sweet and beautiful and, although different, not any less.

You need to believe that you can still be happy in your new sadness.  You can find laughter while in pain and you can find love within the heartbreak.  Take one small step today toward something, anything, that makes you feel better.  It will take you many steps and many days and many months and maybe years to reach a new happy, but if you look for it, and walk toward it, it will be there.

No.  It’s not fair that you need to reconstruct and recreate your dreams.  But it’s possible.  And that’s what matters.

You’ll be fine.

Inspiration Fail

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Sitting on my son’s lift recliner the other day, a heating pad on my lower back because I had pulled or twisted something doing nothing I could remember; wrapped in a hospital blanket, the thin sheet kind that is not too heavy but weirdly comforting maybe just for me because I had spent so many nights wrapped in them in the hospital rooms on different cots while the professionals took care of both me and my son, and unearthly responsibilities had not quite yet settled on my bare shoulders; cotton in my right ear because of some strange infection that I keep meaning to have checked out tomorrow, except tomorrow never gets here; my hair mussed; my clothes a splattered work of art from whatever I had served or cleaned, both human and K9, earlier that day; a box of tissues within reach;  extra-large dropping white socks covering my feet, when the doorbell rang.

Really? My friend said to me after just one glance.  Really?  I feel like I’m visiting my grandmother in a nursing home.

Not sure whether to laugh or cry, I did both.  I don’t feel well, I said.  I’m so tired.  My voice came out much whinier than intended, which made me laugh and cry even harder.

Relentless, knowing I needed to laugh more than cry, my friend kept firing at me. Old lady jokes, the ludicrousness of what I looked like, the difference between me now and me then, offering soft foods, lotions and Jean Nate, until my tears stopped and the laughter hurt.

And my gratitude for having that one person in my life who doesn’t tell me how inspiring I am; who doesn’t view me as super woman; who knows that miracle dust and angels do not actually dance above my shoulders and hearts of love and laughter do not float like bubbles throughout my house;  who knows how often I fail and continually picks me up from ground level so I can fight the next battle; who can see me at my worst and not judge but just point out the absurdity of the situation; who lets me feel sorry for myself, but only to a point; who, at the last moment, steps in front of me to block my nose dive into oblivion by kicking me in the ass to keep going….my gratitude is beyond measure.

I do not ever feel like the inspiration I hear so often that I am, and it is nice to have someone recognize that I am often struggling, unsure, exhausted.  That I am merely surviving.

“You’re such an inspiration” takes everything I do, every moment I suffer, I cry or I laugh and wraps it all up in pretty paper with a silk bow.  And makes it less ugly.  Less real.  Even though it places me on a pedestal of sorts, a pedestal of words, I actually feel I am condensed, marginalized, defined by my role.  And I feel as if I don’t rise every day, I am failing.

Most days, I’d prefer my heating pad and my hospital blanket to being someone else’s inspiration.  I’d prefer to be made fun of for failing than feel weighted down and stressed out by the added responsibility of pretending to be supermom.  It’s just so much easier to cope that way.

I wonder if I could get a senior discount.

 

The Burden of Fear

Why are your braces on the outside of your pants, I asked him when he drove himself into the garage onto the wheelchair lift. Why aren’t they underneath?

That’s how he put them on, he told me. He put them on over my pants.

Oh. Do you like them like that? Are they more comfortable?

No. Not at all. I prefer them the other way.

Why didn’t you say something? Why didn’t you tell him?

Because I can’t move. And I need him to take care of me. And I don’t want to get him mad.

I felt punched in the gut. Stabbed in the heart. All the clichés swooped down on me at once. I knelt on the floor next to him and said, You’re the boss. We are here for you, to make you comfortable. It’s your body. It’s your life. You need to tell us if something is wrong. You are in control of your body.

Even if I can’t move, he asked me? Even when I depend on everyone else?

Especially because you can’t move. We are your arms and your legs, but you are the brain, what controls our actions. Unless it is bad for your health, we will do whatever you ask. You cannot be afraid to ask.

Are you afraid to ask me, too? I asked him. Are you afraid to tell me to do something a different way or not at all? No he answered. Never.

But I wonder. I wonder if that’s true. He depends on me more than anyone. He depends on me for his every basic need. I know he’s not hesitant to ask for something, even two or three things at once, but I wonder if he’s nervous to ask me to not do something or to change the way I do something.

I saw him slightly wince yesterday, while I was getting him dressed. After I was finished, he said to me, you hurt me a little before, getting on my pants. Why didn’t you tell me? I asked him. Right there and then, why didn’t you tell me so I could know exactly what I did wrong and never do it again? It’s ok, he said. It doesn’t hurt much now. I didn’t want to make you feel bad, he said.

He didn’t want to make me feel bad for hurting him.

I felt that familiar anger bubbling to the surface. Followed by hate. For the circumstances that got him here. For the current situation. For the people along the way who made him feel as though he may be a burden.

For the overnight aide who complained that she had to get off her ass and off her phone and walk into his room each time he called because he couldn’t get comfortable himself, because he needed her to adjust his pillows or fix his legs or rub his ankles.

This had better be the last time you call me, she said to him that night. I’m done coming in here. I will call your mother down and she’ll be very angry.

She’s right. I would have been furious. But not with him. Never with him. When he told me the next day what happened, I made sure she didn’t come back again. It’s your job, I said to her. It’s why you’re here overnight, getting paid. If he calls you 50 times an hour you need to tend to him 50 times an hour. How is he going to get comfortable by himself with only one arm that works? He depends on you.

He can’t toss and turn. He can’t adjust his head pillow. He can’t do the things everyone else does in order to find that place, that comfortable place where sleep eventually comes. He can’t go to the bathroom without calling someone. He can’t pick up something that falls. He can’t survive without help.

What can it be like not to be able to move? Not to be able to do anything independently? To lie in the dark at night hoping someone is at the other end of the monitor, awake, in case he needs to pee, to move, to vomit, to scratch an itch, to turn over. Sometimes I think he calls excessively at night while heading off to slumber just to make sure someone is there. To make sure they hear him. Because he’s scared. He’s scared no one will answer.

Behind that smile, that good nature, that humor, are real fears of being alone. Of being a burden. Of being afraid to upset the caregivers lest the caregivers stop caring. Even the caregivers that he knows love him unconditionally and forever.

 

Driving in Reverse

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For a split second, in my mind, he was not quite seventeen yet. For a split second, as the wind whipped through our hair and the music blasted and the sun beat down through the open roof, I was sent back to that summer before it happened, that summer of happy, when he was just a beginning driver and the Jeep was only six months old, and dreams were alive and opportunities were endless and his future was wide open and we were all free and everything was perfectly fine.

For a split second I forgot that it had just taken three people to physically lift him inside his Jeep and place him gently onto the passenger seat, adjusting his legs and his arms because he couldn’t do it himself. I forgot that I wasn’t sitting next to him because I was teaching him how to drive. I forgot that I was driving because he couldn’t, and I forgot that he probably wouldn’t ever sit behind his steering wheel, again.

I forgot that all our lives were now shattered.

As we drove, that entire three-and-a-half-year-heart-wrenching-span-of-time since the accident just seemingly blew out the windows and swirled with the dust particles that had been sitting inside the Jeep for the same amount of time, and then disappeared.

The heartbreak, the grief, the dread, the denial, the refusal to believe what the doctors told us, the twenty-four-hour-a-day care, and the total exhaustion. None of it existed in that split second.  Time rewound in sync with our distance and speed, and we drove faster and further away from the present.

As I navigated the roads, he adjusted the volume on the country music stations I had taught him to listen to and love so many years ago. He turned it louder and louder with his one good hand, and as he sat back and listened to his favorite songs he watched the old familiar roads and the scenery, the scenery he can’t usually see from his perch high up in the wheelchair van.  I knew how happy he was to be in his Jeep with the top off and the hot wind in his face, and my heart became lighter than air but full of something so much heavier.

I turned slightly toward him, and as I glanced at him out of the corner of my eye I pretended he was no longer disabled.  In my mind, then, he was fully abled. He was strong and tanned. He was sitting tall without slumping, without any form of assistance. He was all that a carefree teenage boy with a new Jeep and a new license should be.

I fully turned and looked into those beautiful blue eyes and I saw him smile. From my vantage point I could only see one side of his smile, so to me that smile seemed perfectly symmetrical and the muscles on both sides of his face gave the illusion of working together.   And as he smiled, I laughed. I laughed as untroubled and easily as I always used to laugh when I was with him in his Jeep going anywhere.  And I laughed until I began to cry.

How often had I begged to no one in particular in the dark hours of the night when my heart screamed with the pain of losing the boy I knew….how often had I begged and offered my soul to whomever might want it, for one more chance to be with him as he was before his accident?

“Please let me go back, just one more time.” 

On that day, in that moment, as the dirt roads passed under his Jeep, we drove forward but time somehow reversed.  I knew I had been granted that wish of reliving a memory with the boy I once had. Not just in my mind or in pictures or dreams.  This memory was real enough that I could feel the wind in my hair and the sun on my shoulders.  I could smell the fresh cut grass and the wild flowers as we drove through the fields.  I could reach out and squeeze the hand of the boy sitting next to me in the passenger seat, and he could squeeze back.   I could taste the joy and wild freedom from so long ago, now so lost.

For a split second, I went back to the time before time stopped.