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Ten Years


Some things I remember in blazing color. The black and red jacket he wore with his blue jeans and brown cowboy boots as he hurried to leave the house. The sequined dress with with those ridiculously high pink heels I tried on that morning for one of the upcoming Christmas parties and carelessly tossed on the counter til later, and then then threw out months later, never worn, because the sight of them made me sick. The red and green and white and blue Christmas decorations I had bartered with him to bring upstairs earlier that week in exchange for skipping school. And because he helped me decorate that year, I didn’t have it in me to take the decorations down after, and when someone else did months later without asking, I went absolutely batshit lunatic crazy.

Some things I remember in sound. His cowboy boots clicking on our slate floor. His deep laugh. His promise to bring me a coffee. The 100 sizzling pierogies I was assigned to make for the food stand at the basketball game. Demetra’s laughter on the phone sharing her college stories. The TV on in the basement. Hearing my name called at halftime on the bleachers when the phone call came saying Damon’s hurt. Damon’s hurt. Hearing my own voice alone in my car going 90miles per hour to the hospital screaming, screaming: Do not do this to me.

Some things I just remember in snippets. Picking Talia up from her friend’s house that morning, letting her drive a few blocks, without a permit. Stopping at CVS on the way home. Damon giving me a bear hug before he walked out the door. The little girl I met in the food stand at the basketball game, telling me her name, laughing as I teased her. The little girl who had a father I’d never met, a father who was a neurosurgeon and just hours later saved my son’s life against all odds.

I remember being wrapped in white hospital blankets on the floor of the waiting room and drinking glass after glass of water. I couldn’t get enough water. I remember the waiting room filled with so many friends, kids mostly, so many who held the walls and ceiling from crashing in on me.

I remember the chaplain giving me Damon’s belongings and asking me if I needed spiritual guidance and me telling him he smelled of death and to get away from me.

I remember someone rubbing my back and saying talk to Damon, Karen, you have to talk to him. And so I talked inside my head and said don’t leave me Damon. Please don’t leave me.

I remember the gold hoop earrings on the mean nurse who couldn’t take a second to explain anything to me. I remember the red hair on the other nurse who said to me he’ll be fine and turned to my friend and said he’s not going to make it. I remember the male nurse who was in training under the gold hooped earring nurse and took the time to explain and took the time to care and took the time to smile.
I remember the neurosurgeon, that sweet little girl’s father, after hours of trying to stop the bleeding in Damon’s brain telling us we have room to hope.

Ten years ago today our lives changed in that clichéd split second. The colors dimmed and the sounds quieted. Ten years is a long time. An exhaustingly long time. Usually I use the anniversary date to cheer on all we’ve done and how far Damon has come. But this year, this 10th year, I look back and just remember that day. I grieve for what has been lost. And yet I still hope for miracles. ❤️

Nine Years or Ninety, I Dedicate My Life

December 3, 2011

December 3, 2020

Nine years. And a lifetime ago. Time means absolutely nothing with brain injury. Except that it’s all we have. It’s forever. It’s yesterday. It flies by. It’s at a complete standstill. Day to day is meaningless as progress is measured in inches and ounces over years and years.


Before the accident and after the accident are my only sources of reference in our lives. Then and now. I can’t stop saying those words  even though I absolutely hate it when I hear them come out of my mouth.

Before the accident is always followed by a story, as though I feel I need to prove something to the person I’m talking to.  As though I need to explain that Damon wasn’t always this way. That we weren’t always this way.   “Before the accident,” I say, “Damon was the best skiier, the fastest runner, the most incredible mountain biker.” Or: “Before the accident, we were so happy, we traveled, we had everything.” “Before the accident, Damon built this, he said that, he had everyone peeing in their pants.” And, of course: “Before the accident, Damon took care of his friends, he was nerdishly brilliant and freakishly strong.”  Before the accident has become some rose-colored and perfect lens from which I view my son and that life. Then. 


Of course it was anything but perfect. Damon was a typical 17-year-old boy and not the herculean god I make him out to be. Our lives were shallow and not the matrimonial bliss we portrayed. Reality was tainted. So much time spent in keeping up appearances.  A phony marriage. Teenage girls. A college freshman leading the way to the dreaded empty nest. Fake friends. Too much alcohol. So much frivolity. So much waste. Before the accident (if I were being truthful) I didn’t really care much for myself or my life. Before the accident, life was kind of meaningless.  I did, however,  love my children to death…teenage girls and all.


After the accident we changed. All of us. Damon, of course, the most drastically. He lost so, so much. Every dream. Every opportunity. Just about every friend. He lost the ability to walk and speak well and drive his beloved Jeep. But weighing it all on the after scale, he gained something else. Something non tangible but very much there in his eyes, maybe behind his eyes, deep, deep inside.  He shines a different light than he did before. He emits a softer color. A sweeter soul. And for all his inappropriate words and unfiltered, spoken-out-loud thoughts, he projects an innocence he never had. I often tell him something touched him as he hovered between life and death. Something or someone left their mark. A sort of peace. A calm. Maybe a form of pure happiness. And being near him, we feel it too. We feel better just being close to him. But don’t ask him about it. 
A very (extreme) Christian man talked to him once about him being in a coma. What do you remember, Damon? “I saw Jesus,” was Damon’s answer. Oh, the man was ecstatic. He didn’t understand what Damon said next, but I did.  This man took Damon to a nearby friend, before I had the chance to intervene. Praise be to God, they both said, this boy is a testament to Our Lord. I said nothing until we came home. Damon, did you say Jesus took you into a record store? Like Nardone’s Gallery of Sound? “Yes.”

Damon, wasn’t that from a Family Guy episode?

 “Ha,” he said. “Yes.” 


So, after, he still has the best sense of humor and still makes me laugh. Many of our jokes are old, inside jokes that no one else gets. But they are always funny to us. And I probably appreciate his humor even more, because he has a brain injury, and nine or ninety years ago he couldnt even smile, let alone talk, and it’s wonderous and marvelous and just amazing that he is still so funny.


The girls changed after and then changed again, and again, and again. They are spread across the globe right now,  and I miss them. Are they better or worse or miserable or happy? They’re changed. I search into their souls to find a piece of the innocence they possessed, the innocence that smashed into pieces the day the car hit the cement wall. We all became as mangled as the car for a while, I think. But their journey is their story to tell, not mine. I don’t own their stories. Only Damon’s and mine. 


I’d like to think that I am a better person after. I sold my soul to the highest bidder in that first year, to whomever would heal my boy. I was weak and fraught and then strong and determined. I wonder what price I’ll eventually pay.  I’ve already lost a marriage, two parents, and an adopted grandfather. What more?

I’ve learned so much over the past nine years about what matters and who doesn’t. I have very few close friends but an over abundance of virtual ones across the world. Sometimes I’m not sure which group is more real.

I know, after, I care more and feel more deeply.  My mission is to help those on this journey or any journey, as best I can. Some days are seriously lonely, just me and Dame, and I wonder what we will look like in 20 years. Still the two of us, so much older, going to the same places, laughing at the same dumb jokes, singing the same songs? Who will take care of me when I can no longer take care of him? Will we share caregivers?


People see me in pictures and exclaim as to how happy I look! I love seeing you smile! You look so good!

It’s a picture. On Facebook. I’m not saying I’m not happy. But I’ll always be sad, too. I just post the smiles. Because I’m an ugly crier. And sometimes I just use the happiness filter on my camera.

Nine years or ninety. I’ll never feel life is fair. I’ll never believe things happen for a reason. I’ll never see what Damon’s potential actually was.  I’Il never know a future life without him by my side. 


I talked to my baby girl today and one of her comments to me about taking on more responsibilities in my life was, “You already dedicate your life to Damon, so you need to stop worrying about everyone else.” It hit me then, all over again. This is my life. After. Forever. Nine years, ninety years. I’ve chosen to dedicate it to Damon. I made that promise long ago and there will be nothing and no one who will cause me to break it. So time will continue to fly by and it will continue to be at a standstill. And I’ll age. And I’ll never know happy without sad and I’ll never know freedom without responsibility. But Damon will know love without condition.

And he deserves nothing less, after.

Spinning Away From Control

We passed the turn we were supposed to make. My fault. I was the navigator.

“We missed the turn,” I said out loud, my voice shaking slightly. “We have to turn around. I’m really sorry.”

My body froze. I braced myself for the backlash, the anger, the screaming. I was surprised when he only laughed, found a place to turn around and then found the right exit. I gathered the courage to look up. He was singing the words to a country song playing on the radio. “Thanks,” I said quietly. “Thanks for not getting mad.”

“What ever for?” he asked me, truly perplexed. He turned to look at me sensing my unease, his foot coming off the gas pedal. “Why would I?”

“I don’t know,” I answered. “Because he did. They all did.”

I’m not used to a man who doesn’t go from zero to angry at the slightest inconvenience, the slightest frustration, the slightest annoyance.

I’m used to fingers pointing in my chest, faces contorting into fury and hatred, mean words, and blame. So much blame.

I’ve been programmed to stop, drop and roll, to not add to the anger. Don’t make it worse. Don’t question, don’t solve. Just sit there quietly, disappear, and let it blow over. Or if it escalates, soothe. Take the blame. Use that soft voice.

I’ve been a work-in-progress for a few years, healing from past years of emotional abuse, but took a major step backwards last year when I reopened all the old wounds by again choosing an angry, controlling man.

My opinions made him angry. My tattoos made him angry. My past made him angry. My refusal to wear more makeup or go to church made him angry. My disabled son’s priority in my life made him furious. No one will put up with your lifestyle he told me in a voice way too loud and threatening for my quiet house. No one will accept your situation. No one will listen to Damon’s loud music or his inappropriate videos and deal with any of it. No one will ever want to take on your baggage.

And then, when I felt sorry for myself based on those hideous words now pounding in my head, he spewed out that people have gone through far worse in life and how dare I think I had it so bad with Damon’s situation.

When I finally reached the end of my feeling-not-enough rope, when I finally mustered up that mama bear strength, I looked at this angry man and said in a quiet voice. I am not afraid of you. Get out.

Before my body’s involuntary reaction to my navigation flop, I thought I had totally healed. I thought I had finally moved through all the triggers which caused me to walk on eggshells, to always want to please, to not allow me to be me. But emotional abuse doesn’t shed just because the abuser is gone. It remains until each trigger is faced head on. Not avoided; navigated through. Navigated through by saying That was then and this is now, and I was never to blame for anyone else’s inner demons, feelings of worthlessness, or insecurities. By saying, Threats, emotional blackmail, control, and anger are the workings of a little man and have nothing to do with me.

Most importantly, healing from emotional abuse requires breaking molds. Changing gears. Choosing someone different. And then understanding this different guy is not the other guys.

I’ve had that bad habit of choosing the wrong guy. Of repeating the pattern, over and over again. “You need to understand control doesn’t equal love,” my daughter told me time and time again, knowing that I had a very controlling mother and then husband, and that for my first 50 years of my life I honestly didn’t know that I could have love without control. That I could be loved without anger. That I could be accepted without someone trying to change or mold me.

When this right guy finally stepped in front of me, I said to my girlfriend, “I don’t know…he’s not my usual personality type.”

And my friend said to me, “Seriously? Look where your usual personality type has gotten you.”

He is unusual because he truly accepts me as is, unconditionally, and has no desire to change me, control me, or make himself feel like a big man by making me less-than or causing me to squirm. He trusts who I am, respects who I am, respects himself, and has the confidence in himself to put me on a pedestal without any fear whatsoever that by doing so he may lower himself. Rather, he elevates us both.

He is not afraid of the priority Damon requires in my life and unequivocally accepts him as a huge part of me, saying you are who you are because of everything you’ve endured. A lesser man would be threatened. Lesser men were threatened.

I feel him holding the end of the tape while I slowly spin to unravel….that tape which has wrapped me up and held me inside of me, like a mummy. And with each unraveling, each full rotation, I expose more and more of my real self….the self I’ve hidden away for so long. I hear his words now: Please do not ever change even one ounce of who you are, instead of the other words: You need to change your hair or your outlook or your plans or wear some lipstick or what were you possibly thinking or just grow the fuck up.

I should never have had to try so hard to please anyone, ever, in order to keep the peace, to make someone else feel important at the expense of me feeling so small. I should never have accepted being made to be anyone other than me.

I should never have been made to feel like a child in an adult relationship, by a man-child pretending to be an adult.

I know this now. But I cant go back and change it, then.

Instead of an onslaught of condescension or reprimands when I screw up or merely stumble, today, I’m met with laughter….the belly aching kind, gentle teasing, but also encouragement. I’m met on an equal plane, a level playing field. With a partner and not a prison guard. How it should be. How it never was.

I know I’m still in the healing phase. But I’m truly getting better. I seldom walk on those eggshells anymore. And when those triggers appear, I try to no longer look down; I slowly glance up and look into the eyes of this wonderful guy I’m with and breathe deeply and stay in the present, and know I’m ok. I’m safe from the past, from myself, from all the boxes I’ve ever lived in.

I know I can be loved without control. And I know I can love without fear.

I’m finally on my way to free.

Please See Me

I’m 17.

I never grow up.

My brain is broken.

My thoughts are sometimes stuck or sometimes pour out so quickly my mouth can’t keep up, and all the words don’t come out right or sound all jumbled as though I don’t have coherent thoughts. But I do. Please have patience.

My limbs aren’t all that limber; some don’t move at all. My brain is broken and affects all that.

But I’m not dumb. My mind is perfect. I can read, I can write, I am probably still smarter than many of you. I was classified as “gifted” once. But you wont see it if you don’t listen. If you don’t take the time to know me. If you think I’m disabled through and through.

I can do advanced math problems in my head and I will let you know when your grammar is off. I play word games on my iPad and there is a good chance I will beat you. I outsmart my mom with my ability to navigate the internet and go places she tries to keep me away from.

My memories are intact. I remember the me I was and the crazy shit I used to do before. I remember you. I remember yesterday. My memory today is actually stronger than it ever was and I will wow you with my ability to recall almost everything.

My brain is broken, but I’m not sad. I’m not bitter. I’m not ungrateful. I’m not frustrated. I’m actually happy all the time.

I watch the way you stare at me if you happen to run in to me and you even bother to stop. I know I make you uncomfortable. I’m not who I was. But I am who I am. And I’m ok with that. I wish you could be ok with that.

Like most of you, I just want love. And friendship. And acceptance. And inclusion.

I don’t know mean. So I don’t think ill of you for no longer visiting me. For no longer calling. It hardly occurs to me that you’re no longer even here. No matter how often I reach out. Your ignoring me hasn’t sunk in. Your blocking me hasn’t sunk in. I have no idea that I may be annoying you. I have no idea that you have grown up and moved on. I haven’t. I’m still 17. And my brain is broken.

I love to make you laugh. I love to laugh. I’m sorry if my jokes are silly or offensive. Sometimes I can’t differentiate between my audiences. But my humor is quick and you will think I’m witty. If you stop to listen.

I have a tight circle surrounding me. It’s woven with love. The love protects me from any perceived threat or hurt. Even your absence.

My brain is broken. But my heart is not. I feel love. I love unconditionally. Please see me.

💚This is Brain Injury Awareness month💚

Seventh Inning Stretch

“It’s like the seventh inning stretch, Mom,” Damon said to me this morning, this seventh year anniversary mark of his accident.

Perfect, I thought. I am feeling it. That stretch. Emotionally. Physically. Mentally.

Stand up. Regroup. Reassess. Readjust. Take it all in. Stretch.

Seven years in and Damon is well. He’s healthy. He’s happy. But, most importantly, he’s comfortable in his new skin. He accepts where he is now. He believes in where he’s going. He’s strong. He’s smart. He has this uncanny ability to draw others in. To make them smile. To make them laugh. To make them feel so special, they come back for more. For more of whatever it is he has that makes them feel so good.

Seven years in and I have finally found my peace. Regrets have turned into anticipation. Sadness has changed to joy. My blessings of today have begun to surpass the hell of yesterday. What is has finally overtaken what could have been. I’m ok now. I’m really ok.

This past year I was on a mission to re-find me. Or perhaps re-invent me. And I have. A me I like a lot better than the me 7 years ago. A me who has learned so many things about life and love; hope and faith; beauty and ugliness; honesty; compassion…the real kind not just the lip service kind; weakness; strength; what’s authentic and what’s a facade; what matters and who doesn’t; and how to be real to others and true to myself.

In this past year I’ve shed people and places and their truths and their lies. I’ve shed walls that imprisoned me and a past that controlled me. Only when I let go of the monsters inside of me did I find the beauty outside of me. The glow to finally eliminate much of the darkness.

In this seventh inning stretch I reach high for the future I’ve always wanted and thought for most of these past seven years I was no longer capable of having. A future now in sight. I reach for my childhood dreams to become reality…. fairy tales and white horses, a real life love story, and a happily ever after, despite what’s happened….or maybe, in some twisted fucked up way, because of what’s happened.

I try to wrap my mind around the future of this boy who laughs, who loves purely and completely, who feels only happiness and nothing else. A gift so graciously bestowed upon him, to never feel sadness or anger or depression or frustration. Debilitating loss after devastating loss after shocking loss after unfair loss, and the closest he has ever come to showing a different emotion is to say, “That’s sad, Mom. If I could feel sadness, I definitely would be sad right now.”

Of course our story hasn’t ended. We are only stretching. We are only kneading muscles and relieving aches. We have innings to go. Love to give. Chapters to write. But what a difference now to look at our life as though we’re winning and not playing just to catch up. We’re confident. We’re thankful. Our energy has changed. And we’re up to bat.

Thank you for supporting us through these seven years. We love you all so much.

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.