Wednesday, September 6, 2017

18 months and the war continues


BJ left us 18 months ago. I really never thought that I would have had to be here without him for this long. (Read whatever you want into that.) It's been hell. There have been some good days sprinkled in over the past 18 months, but this grief overshadows everything. I've been happy at times, but there is always that piece of me that is still deeply hurting. Being carefree is a distant feeling, and one I doubt I will ever feel again. Yes, I know that BJ is in Heaven and I know without doubt that I will see him again, but that doesn't take the pain away. How could it when I desperately miss him being physically present with us? I am a mother to the fullest definition of the word and I want to talk to, hug, teach, do things for him and love him with everything I have in me. I have so much to give him and he's not here. 

He'll never be here again and I have no place for the things I would be doing for him. The mom I am to Carly doesn't take the place of the mom I am to BJ. No special dinners, no special birthday cakes or new shoes and clothes, no pulling my hair out as he leaves in the car for the first time, no watching him play basketball or football or annoying his sister. No scrutinizing girlfriends, or dancing at his wedding, or loving on his babies. There is none of that for BJ anymore and it's just too quiet...except inside my mind. 

I liken this to a battlefield. Bodies are scattered, there is evidence of death, smoke and ruin, and clothes are tattered and dirty. Once tall, healthy trees have been chipped at and pushed until they have crashed to the ground, taking others down with them. 

I, along with so many others like me, am wounded severely, missing limbs, ears ringing, confused and disoriented, constantly scanning through smoke and fog, searching for my child even though I know he's gone. All those like me are bleeding and broken, crawling, pushing ourselves onward through the trenches, scratching at the ground, pulling ourselves along with all our might. 

Some of us have succumbed to the exhaustion of trying to get through the turmoil and lay in a mound of brokenness. Some refuse to move and join their beloved. Some warriors have made it through this war zone with deep battle scars that aren't quite healed. They have come back into the smoke to look for survivors and whisper encouragement to the broken souls.

Unaffected onlookers stand in the DMZ and watch, some with worried faces, some without expression. Some stand for a short time and watch, some just turn their backs to the grotesque sight. Some call out to the wounded warriors, advising them of a better way to crawl, or directing them to a different path. They claim knowledge of the battle plan, and yet they stand, unaffected, unscathed, with no battle scars. The wounded warriors hear the calls from the onlookers as their words chip away at their reservoir of perseverance. 

There are times along the way when the wounded quickly take cover, attempting to protect themselves from impending trauma and further destruction that isn't always seen by the watchers. Those in the DMZ remark among themselves how strong the warriors are, happy that they haven't been drafted. 

As they crawl and push themselves along, the warriors on the battlefield scream out in deep pain and plead with whoever is listening to help them stop this war. "Please!!! Help us stop this destruction, stop this cruelty and torture, stop all this pain!" Some of the onlookers remain silent, some call out in agreement to stop the war, and very few onlookers join the resistance. 

Let's be clear. This is war.




The Gap by Michael Crenlinsten

The gap between those who have lost children and those who have not is profoundly difficult to bridge. No one, whose children are well and intact, can be expected to understand what parents who have lost children have absorbed, what they bear. 

Our child now comes to us through every blade of grass, every crack in the sidewalk, every bowl of breakfast cereal, every kid on a scooter. We seek contact with their atoms, their hairbrush, toothbrush, and clothing. We reach for what was integrally woven into the fabric of our lives, now torn and shredded. 

What we had wanted, when our child so suddenly took ill, was for them to be treated. We wanted them to be annoyed that their head had been shaved for surgery. We would have shaved ours and then watched them smile as we recovered together, whatever the nature of that recovery. “Recover” is no longer a part of our vocabulary. Now we simply walk through the noise and debris of our personal ground zero. A black hole has been blown through our souls and, indeed, it often does not allow the light to escape. It is a difficult place. For us to enter there, is to be cut deeply, and torn anew, each time we go there, by the jagged edges of our loss. Yet we return, again and again, for that is where our child now resides. This will be so for years to come and it will change us, profoundly. At some point in the distant future, the edges of that hole will have tempered and softened but the empty space will remain…a life sentence.

It is not unlike a dog who, suddenly hit by a car, survives. The impact is devastating and leaves the animal in shock, confusion, and despair. In the time the animal recovers adequately to spend the remainder if it’s life on three legs. It is not that he is unable, eventually, to function or even to laugh and play. The reality, however, is that on three legs from here on, every step he takes, every action, virtually every breath reminds him of what he has lost. We are that animal. 

Our community of friends will change through this. There is no avoiding it. We grieve for our child, in part, through talking about them and our feelings for having lost them. Some go there with us; others cannot and, through their denial add a further measure, however unwittingly, to an already heavy burden. 

This was not a sprained ankle or major surgery that we suffered. Assuming that we may be feeling “better” six months later is simply “to not get it.” The excruciating and isolating reality that bereaved parents feel is hermetically sealed from the nature of any other human experience. Thus it is a trap, those whose compassion and insight we most need are those for whom we abhor the experience that would allow them that sensitivity and capacity. And, yet, somehow, there are those, each in their own fashion, who have found a way to reach us and stay, to our immeasurable comfort. 

They have understood, again each in their own way, that our child remains our child through our memory. Their memory is sustained through speaking about them and our feelings about their death. Deny this and you deny their life. Deny their life and you have no place in ours. That’s the equation. How different people have responded to our loss, or not, transcends a range of attitudes and personal histories. It is teaching us much about human capacity and experience, albeit at a searing price. Parents’ memories of a lost child sustain that life. It should be the other way around. 

We recognize that we have removed to an emotional place where it is often very difficult to reach us. Our attempts to be normal are painful and the day to day carries a silent, screaming anguish that accompanies us, sometimes from moment to moment. Were we to give it its own voice, we fear we would become truly unreachable, and so we remain “strong” for a host of reasons, even as the strength saps our energy and drains our will. Were we to act out our true feelings we would be impossible to be with. We resent having to act normal, yet we dare not do otherwise. People who understand this dynamic are our gold standard. Working our way through this over the years will change us as does every experience…and extreme experience changes one extremely. We know we will have recovered when, as we have read, it is no longer so painful to be normal. We do not know who we will be at that point or who will still be with us.

There will come a time, quite some number of years down the road, when the balance between the desperate awareness of what we have lost when our child died will be somewhat balanced by the warm and joyful memories of what we had with them when they lived. I neither long for nor cringe from that time. It will simply come. We will recognize it, though now it is beyond us.

So, yes, our beloved child is gone…a light in our lives gone out leaving blackness for us, left behind, to stumble through. And, while we understand and deeply feel the meaning of our phrase “Now we are lit by our child only from within,” we hope, desperately, that they are where the light is. We are trying to understand what this means, as we seek our own way, for the remainder of our lives, to some kind of light. We love our child and are trying to breathe. 

We have read that the gap is so difficult that, often, bereaved parents must attempt to reach out to friends and relatives or risk losing them. This is our attempt. For those untarnished by such events, who wish to know in some way what they, thankfully, do not know, read this. It may provide a window that is helpful for both sides of the gap.







Friday, September 1, 2017

Football goes gold for cancer awareness by Brianna Crane, Denver Weekly



DENVER – On Sept. 1 the North Lincoln High School cheerleaders will wave gold pompoms and the Knights football players will sport gold socks as they take on Fred T. Foard under the lights.
The gold socks and pompoms will be provided by the Stand Firm Warrior Foundation – a nonprofit organization aimed to bring awareness to childhood cancer and alternative forms of treatment – in honor of children's cancer awareness month in September.
Michelle Love, the organization’s president, created the Stand Firm Warrior Foundation in honor of her son, BJ Correll. He was diagnosed with acute lymphoblastic leukemia (ALL) in 2012 two weeks into sixth grade at North Lincoln Middle, and was homebound for the rest of the school year.
“We tried all kinds (of chemotherapy), but the chemo didn’t work,” Love said.
She later explained “the leukemia cells became resistant” and a “few rogue cells” mutated and couldn’t be stopped.
Still, BJ endured, and by eighth grade, he was “looking healthy” and even excelled on the basketball and football teams.  
“He was a tough kid,” Love said. “When he was in chemo, he was working out.”
Love said he created 25-pound weights, strapped them to his back and would walk for miles on the treadmill, determined to build physical strength during his treatment. When he was at his healthiest, BJ was 6-foot-2 and 170 pounds.
“The leukemia was back,” Love said, noting that BJ relapsed while undergoing chemotherapy treatments. 
After months at Levine Children’s Hospital and a clinical trial at Duke University’s Cancer Center, Love had to make a difficult decision.
“On Feb. 20, 2016, we had done everything we could medically, it left him at about 115 pounds,” Love said. “We came home on kids path, which is a nice way of saying kids’ hospice.”
On March 4 BJ turned 15 years old, and on March 6 he passed away.
“He had all the faith in the world that God had this handled,” Love said. “When he left us, it was a shock… we still had all the hope in the world.”
In the wake of her loss, Love knew her son would want her to stand firm and continue to fight, thus the Stand Firm Warrior Foundation was born.
“I felt like we needed to find someone doing research,” Love said looking back on her son’s treatment journey. “I really believes that (chemotherapy) is what ended up killing my son.”
ALL, Love said, is one of the most curable types of children's cancers, yet many die from it each day.
“We need to keep getting the word out. Kids need funding, their cancer is not adult cancer,” Love said. “Most kid cancers are using adult treatments, and very few are formulated for children.”
Love said convincing NLHS to go gold for one game in September was simple, as the team has shown support for other forms of cancer as well.
“The kids deserve just as much awareness as the pink… their lives get cut off years before they can experience anything,” Love said.
Kickoff for the awareness game is at 7:30 p.m., but Love will be selling T-shirts beforehand at $10 each so the entire crowd has the opportunity to wear gold.
North Lincoln Middle will also host a children’s cancer awareness game on Friday Sept. 20. For more information about the games or the Stand Firm Warrior Foundation, visit standfirmwarrior.org.

Sunday, August 20, 2017

Rainbow promises



Getting ready to leave the house for an appointment earlier, I looked outside to see if the rain had stopped. The sun was shining but it was still raining. 

I told Carly that there had to be a rainbow, so I went out the front door to look. 

Sun, rain but no rainbow. 

I went to the back door and stepped outside, searching the sky. 

Again, sun, rain and no rainbow. 

Disappointed, I thought for sure I would see one. 

Still a little disappointed, driving down the highway I was behind a tractor trailer. 

Then completely unexpectedly, I saw it. 

My very own rainbow in the over spray of rain off the back of the truck.

Felt like a hug. One I really needed.

Another Sunday



Didn't sleep well again. Finally gave into the restlessness and opened my eyes to see 4am, yet again. Xanax couldn't even keep my mind quiet last night. As usual, I read from my phone until my eyes are too heavy to stay open. As the time ticked by, the torture going on in my own head was numbed from mindless scrolling. Around 5:30, I stopped scrolling when I saw a familiar face. Another life, one we knew, one who had impact on our lives, left this world about 5am this morning.

Roman Komenda and BJ had been in the same classes in school. The first time I knew of Roman, he was standing with his IV pole and oxygen tank in the 11th floor hallway at Levine Children's Hospital. I was trailing behind the nurses who were quickly rolling BJ in his hospital bed out to the elevators for a CT scan. This scrawny boy standing there with his nasal cannula said "Hey BJ" as the nurses rolled right by.  He looked at me and asked... "Is that BJ?" I said "yes, but how do you know him?" I really didn't get his quiet answer as I was rushing to catch up with BJ and his entourage.

That not-by-chance meeting started a pathway toward our interest in natural treatments, supplements, concoctions, alkaline water and such things. Lingering outside our room, Roman's mom very obviously wanted to talk to me. This particular time in the day where time didn't really exist for us, Roman's mom, Jadwiga cornered me in the small laundry closet. She is from Poland, and tries very hard with English, but it was still very hard for me to understand. What I got from her, is that BJ could benefit from "natural". She invited me back to her room when I had a free moment, that she would like to give me some things. I found a quick moment to go down the hallway to Roman's room, who translated for his mom, and explained to me what she was trying to express. I could see how deeply important it was to her. She sent me back with a bag of tinctures and dropper bottles of things I really didn't understand. She really started the change in my way of thinking about medicines and nutrition. It was Roman and his mom that, coupled with a few other non-coincidental suggestions, put us firmly on a path and strong interest in what God's earth held for healing.

We had many visits with Jadwiga and Roman over the past year. They came to BJ's visitation, with Roman's oxygen tank in tow. Carly and I visited him at Levine last year, and Jadwiga gave us the update on their upcoming trip to Chapel Hill, for a lung transplant. We kept up as much as possible through very sparse facebook posts. We saw them at the post office one afternoon, and Roman still had that smile on his face, and twinkly blue eyes. That's what always stuck out to me about Roman. That smile. He was always so happy to see us, and even with his severe breathing problems, he smiled.

So this morning, when I saw that smiling face, I stopped. I read. Roman's sister had posted that at 5am this morning, after a medical flight back to Charlotte, Roman died. He had been at a children's hospital in Texas for another lung transplant evaluation. I lay there looking at his picture, and all those memories of Roman, the day that we met, the conversations with him and Jadwiga, and that smile came back in rapid succession. Roman probably already said Hi to BJ this morning, and maybe BJ even welcomed him. A very slight smile broke the rapid development of tears for just a moment at these happy thoughts and the images of two strong, healthy boys with beautiful smiles and twinkly blue eyes meeting each other again in a different space.

Then my thoughts returned here to the present...a place without two beautiful smiles and sparkly blue eyes...a place where moms grieve for their children. I know the pain that Jadwiga is in and the road before her. I felt a drawn toward reaching out to her, so I sent a quick text just to let her know I am thinking about her, and praying for their family.

In the darkness and quiet, in the midst of a chaos of tangled thoughts, I realized it is Sunday. BJ died on a Sunday, 531 days ago. 531 days that can still feel like yesterday, at any time of the week, any time of the day or night, and especially on a Sunday.




Wednesday, July 19, 2017

Kinder mourn


Many people have offered their advice over the past few years. Much of that advice was suggestions to see a grief counselor. I'm not against I had an appointment today at Kinder-mourn. The appointment was made out of shear desperation. Days on end of churning at the bottom of an ocean of grief after a random wave knocked me down. I just couldn't pull myself up, couldn't get up off my knees. I was so tired of feeling so...defeated. So I caved, and called to make an appointment with a grief counselor, and breathed through the next 7 days.

The counselor was very nice, and knowledgable. She told me about their services, and then listened to me tell her why I was there.

I told her about BJ. I started with his diagnosis, told her about his relapse, and the remaining few months of his life. I told her how connected we were, and how great he was. In 40 minutes, I sobbed through the story of how hard we fought, how we all 3 lived at Levine, how Carly accepted me giving all I had to BJ, how we celebrated BJ's birthday, and how we watched him die the next day. I talked about my struggling marriage, my inability to go back to my career, and my lack of motivation or energy for much of anything.

All normal, she said. She was very sweet, very understanding. She went through some handouts for grieving adults, and then the paperwork on grieving children. It all felt almost robotic...like I was just one more sad story in an ocean of sad stories.

This is an ocean in which I'm drowning. She just threw me a rope and walked off.

Sunday, July 16, 2017

The Cliff



Imagine...

You tread up a hill and see a loved one sitting on the edge of a cliff, with her back to you. You see her sitting there doing nothing. She won't talk, and she won't stand up. She hardly acknowledges your presence. She hides her face from you. You stand behind her and say ..."why are you just sitting there?!"..."there are things you should be doing!"... "why won't you talk to me!" ... "you don't care about me!" ... "I'm tired of this" ... "You never even answer your phone when I call!"

This is what you don't see...

She has wandered alone in the desolate darkness and found herself sitting there, weary and ravaged from the traumatic events in her life, bare feet dangling over the side. Her shoulders are drawn forward, and her head is bowed. Her hair is in knots, and her eyes are swollen and pink. Her face is tear stained, and dirty. She feels crazy, defeated, ugly, broken and let-down. She is staring emptily at what is below her feet. She sits quietly, not uttering a word, but there is a conversation raging inside her mind. She is despondent and exhausted from this internal battle of fighting to break herself away from the edge and leave this place by the cliff. Tired of fighting the urge to throw herself into the abyss in a fit of rage.

This is not the first time she has been here. In fact, it is a place she visits often, and each time, spends just enough time sitting on the edge, that she eventually wins the fight to leave that spot. There are times when the implosion within her brings her right back to this place on the cliff. She doesn't even know how she got there most of the time. She really doesn't want to be there, but she has such a hard time getting her feet underneath her, to turn her back and walk away from the edge. She would much rather walk in the sunshine, listen to the birds happily chirping, and feel the gentle breeze of the wind. She would love to hear herself laughing and feel the pull of a smile on her cheeks. Those moments seem fleeting....and unexpectedly, she is back at her place on the cliff.

While she sits at this place, she finds it very difficult to break her gaze at what is below her feet. She is almost immune to the world around her. She knows it exists, but the draw of the cliff's edge is too strong. Her focus has become very narrow, and as much as she wants to open it up wide, she has little energy to fight the draw of the cliff. With every criticizing word, she draws closer to the edge, unable to breathe until she desperately cries out for silence. The silence is better than harsh words, critiques and expectations. A quiet presence is welcome and soft, and calm, comforting words are a balm to her ears, reaching into her mind, giving her strength to turn away from the cliff. When this happens, she is relieved, takes a deep, healing breath, but knows that at a moment when she is unprepared, the cliff will call her back again.

The more often she visits that place, the more depleted her energy becomes. She is very, very tired. Her breaths are shallow. Speech is an effort, and motivation is absent from her mind. Her first desire is to sleep, to regain some energy that the cliff took away. She desperately does not want to go back to the place by the cliff.

But she'll find herself there again. 

This is deep grief. 

This is child loss.