I Love You Both


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.

In Response to Another Heartbroken Mother


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


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.


Driving in Reverse


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.

Broken Hearts and Orange Popsicles


You never expect it although nothing in life comes with more certainty.

I joked with my dad that night as I drove him to urgent care, asking him why he picked the coldest night of the year to not feel so great. A closed sign on the door made me turn to him and say, “How bad are you? Should we go to the ER?

Nah. Let’s find another urgent care place.

What exactly are your symptoms?” I asked him.

I’m not sure,” he said. “I’m just not right.

He didn’t look just not right; he looked just wrong. I drove him to the emergency room.

Chest pains I told the lady behind the desk. I said it to rush their response time. I said it because he looked weak. I said it because deep down perhaps I knew.

He joked with the nurses. He joked with the doctor. Stop joking, I thought, or they won’t be thorough. They’ll think you’re fine.

But the tests weren’t a joke. The results didn’t make anyone laugh.

Can’t be my heart he kept saying. No one in my family had heart issues. They all died of cancer. Maybe they didn’t live long enough because of the cancer for anyone to know they had heart issues.

This came from out of nowhere he said. It’s been building for a while they told him.

Blindsided. All of us. Even him. Especially him. I’ve always taken care of everyone he said. Who’s going to take care of everyone? You’re not going anywhere I told him. Not now. Not yet.

And my brother and I talked to the doctor and my brother remained calm and something inside me just broke and something inside me twisted and something inside me that for three years since my son’s accident held the floodwaters at bay became unplugged and every emotion rushed out, poured out, and I was reliving three years ago with my son but it was three years later now with my daddy and I couldn’t keep anything in check. I couldn’t keep anything under control.

And I rubbed his forehead and I held his hand and I held up his head so he could sip some water. And I stared at the monitors that I knew so well and I watched his vitals make a slight comeback. And I screamed at a nurse for her incompetence and I took turns with my brother trying to make him laugh, trying to make him smile.

And I washed his hair and I helped him walk down the hall when he was given the ok to stand. And I reassured my mom that everything was alright and my brother reassured me.

There is no option I said later when the doctors gave us options. There is no option. He needs the surgery. Because he acted like he was 60, and looked no older than 70, everyone forgot that he was 86. Even us. Have the surgery, Dad, we told him because they told us there was over a ninety-five percent chance of success. They told us without it that there would be a ten percent chance he’d make it past the next six months. My father was a gambler – he always loved to go to the nearby casino and play craps. He read books on craps and studied the odds. “Ninety-five percent success rate? You bet those odds all day long, Dad,” said my brother.

What choice do I have?” he asked. “I’ll have the surgery. And I want to have it done here in Wilkes-Barre.

And we all gathered together that morning of, and we all joked around as families do. My brain-injured son sat in his wheelchair; my daughters sat on the foot of the hospital bed, one being calm and one being funny, coming in scrubs and donning surgical gloves, just to make us all laugh. We stripped him of his jewelry. My mother, one hand on her cane, the other shaking as she held his wedding band, terror in her voice as she asked, almost pleading, “You’ll wear this again, won’t you?

I took his cross and put it around my neck, the gold mixing with my silver, a combination I’d never do, and now won’t do without.

We waited in the waiting room for the three long hours, but my mom waited at home because, at 88, she was too weak and her health was too poor to wait in that hospital. We nervously joked and we nervously laughed and we waited and we waited. My oldest did some yoga poses and my youngest played on her phone. My son had long gone by then, being given a reprieve from the wait, needing his own care. When the doctor told us all was well and my dad was in recovery, my brother left to pick my mom up from her nearby house and when we were able, we all rushed to see him in the recovery area. I held his hand and I shushed the others. I was so experienced in this role, the only one who knew hospitals and recoveries and the searing pain of seeing your loved one attached to breathing tubes and wires and monitors and bells and whistles. I took charge and after a while I kicked them all out, with the promise that I, too, would go right home and rest. But I didn’t. I stayed until after midnight. Until his blood pressure stabilized. Until I made sure that those on duty knew the worth of this man to his family, to me, and would take the very best care of him. I held his hand until 1:00 AM.

He wants me to turn on CNBC,” my brother told me on the phone the next morning, around 7:00. “He’s in a lot of pain, but he wants to watch the stock market.

I breathed a huge sigh of relief. I smiled. That was Dad. He’ll be just fine. We all suffered through years of having to be quiet and listen to the news and the stock market reports. In the car, in the family room. My son, when he relearned how to speak after his accident, always brought a smile to my dad’s face when he’d greet my dad with “Hi, Pappou. How’re your stocks doing?” The market and my dad were one; when I heard stock market, even after I moved out of the house, I smelled my dad’s aftershave. I pictured the man who had shaped my life, who told me from a very young age that I could be whatever I wanted to be and I could accomplish whatever I decided to accomplish. The man who was my safety net even in this fifth decade of my life. The man who always said everything will be fine…don’t you worry about that. The man who gave me confidence and wisdom and a smile and story after story and unconditional love, the special love only given to daddy’s little girl.

I pictured this very successful businessman at his desk, in the office in his house, with the yellow sheets of lined paper and the green accounting tablets, long before computers were introduced into his world and long after. Writing down the numbers. Adding the profits or subtracting the loss. He always had a smile on his face, either way. This was his game. This was his talent. We of course all complained when forced to listen to the business news, but on that morning I was thrilled at this normalcy. I told my brother I’d be in in in a while after I had arranged care for my son. I got to the hospital around lunchtime to relieve him and my daughter and mother. “His smile was biggest when he saw you,” my daughter told me later. “He knew you’d know what to do. He was so happy to see you.

But he was in such pain. So much pain that he told my brother that if he had known the pain would have been so bad, he’d never have had the surgery. Did you tell him a few days of pain is worth living at least 10 years more, I snapped. Did you tell him that?

Do you want a popsicle, Daddy?” I asked him that day after what minutes before the doctors had told us was a very successful open heart surgery, and that the pain was to be expected. I had just sent my brother home with my mother, right after the doctors had left, telling him that Mom didn’t need to sit there any longer, that I’d stay through the afternoon and he could relieve me later that evening. “The nurse said you could have a popsicle.” He nodded yes and I ran out to the nurses’ station to ask for one. The nurse behind the desk unwrapped an orange ice pop on a single stick and handed it to me to give to him.

Here, Daddy,” I said as I put it toward his mouth. “Take some of this and your mouth won’t be so dry.

Instead of licking it, he bit into it from the top, making me wince at the thought of the cold hitting his teeth. A piece fell down and landed on my hand. I licked it off my finger, tasting long-ago summers, the covered back porch on the beach house; kids running up the steps shrieking, kicking up sand. It was sugary sweet, but not my favorite flavor. More the flavor of baby aspirin, not citrus as orange suggests, and I wondered briefly as the cold ice hit my tongue, why they called it orange-flavored; oranges never tasted that flavor. Maybe orange was named for the color, but then why not purple flavored, instead of grape; why not red and not cherry?

I gave him another bite, but this time he had trouble getting a piece off because he was too close to the stick. “Maybe you should hold it, Daddy. Maybe it would be easier if you fed yourself.” But at that instance something happened, something that the doctors told me later I didn’t see, but I knew I saw because I was there and they were not. I was there, holding his hand and holding the orange popsicle. I watched as his eyes shut and then flew open, almost in terror; I watched as his hand couldn’t find his mouth, and I listened as his words slurred all together. I glanced over at the monitors he was plugged into, the monitors that I knew so well, the monitors that turned you from a living person to just a machine with numbers, and I watched as the numbers fell. I watched as his blood pressure rapidly dropped from 110 to 80 to 40 and I screamed to the nurse whose back was to us, who was too involved in whatever it was she was doing, I screamed something is wrong, something is very wrong, and she turned and she kicked me out so I wouldn’t be in the way, so I wouldn’t see, and someone else led me outside the unit into the empty waiting room, but not until after I heard the call. Not until after I heard Code Blue.

And waiting in that waiting room, for a while all by myself, shaking with fear and with pain and wondering what do I do now, what do I do without my daddy, I bit my nail, the nail of the finger that had caught the orange popsicle, and it no longer tasted of summer and beaches. It no longer tasted of baby aspirin. It tasted of death.


Nicholas J. Pyros

July 14, 1928 – February 24, 2015