Wednesday, September 6, 2017

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.







Sunday, April 2, 2017

The Boy in Carolina Blue

Well known fact: BJ loved his North Carolina Tar Heels
He loved wearing anything Tarheel, and especially loved wearing it when we were at Duke. The nurses would just laugh at him because he said he would have them "converted" by the time he left. The doctors tried to overlook the obvious fact that his blood ran Carolina blue, but it was pretty hard to miss this boy who brought his Tarheels sheets!

Wednesday, February 22, 2017

Brownies

Carly recalled a memory this morning while we were in the kitchen talking and making breakfast and her lunch. She blurted out... Oh my gosh. I thought something was wrong, but she said "I just remembered something that BJ did that made me soooooo mad!"

She said one afternoon while I was at work, BJ called out to her and asked if she wanted some brownies. She came running into the kitchen and there he was, with E's cut out of brown paper. She said she started slapping at him. He was laughing so hard at her. He had also set up his phone to capture her reaction....   I'd love to find that video.

She recalled him possibly being in 7th grade at the time.

Monday, August 29, 2016

Back to School...Should Have Been

This should be an entirely different picture.

But it is just this

...and honestly, it freaking sucks...worse than anything could possibly suck, and then sucks a whole lot more. All day everyday, not just the first day of school. But these times that really push the "should have been" to the forefront, there just are no words to describe the heart and soul ache.
Too many families are dealing with this as their 'welcome back to school', and that all-day-everyday ache. Too many kids are having to put up the fight for their lives.

Stay with me for a few minutes. September is #ChildhoodCancerAwareness month. It's the month we #goGOLD for the kids who are forced to grow up faster than they should, and be forced to think about things that they should not have to think about at a young age...the kids who will N.E.V.E.R have normal lives. Even when they achieve remission, or even experience a joyous cancer-free status, the thought of relapse is always lurking in their minds. They wait with bated breath for good news at every check-up. The fight is never over. The roller coaster never ends.

The reality is that nationally, about 46 kids will get a cancer diagnosis today. Just today alone. About 46 will get a cancer diagnosis tomorrow, and the day after that too. Imagine about 2 entire classrooms of children, all with cancer just diagnosed today. On September 13, 2012, there were about 46 kids who were diagnosed with cancer. My son was one of those 46. Before September 13, 2012, I really didn't think much about children's cancer. Maybe you don't think much about it either.

I would have never believed that my happy, healthy, super athletic son would be diagnosed with the "most curable kind" of leukemia at age 11, then relapse still on treatment at age 14, and die less than a year later. Across the world today, about 250 kids will die from cancer, and about 250 will die from cancer tomorrow. Did you read that...did you absorb that? Two hundred and fifty kids will DIE today from cancer. Childhood cancer isn't cute, smiling bald-headed children who get to do fun things with celebrities or have Disney vacations. It's UGLY. It's horrid. It's lost hair, lost weight, lost muscle mass, it's feelings of shame, of being different, not fitting in, missed friends, missed school, missed sports, missed important milestones, handfuls of pills, shots, and more shots...the kind that go deep and the liquid burns into your legs, surgeries, ports, anesthesia, spinal chemo, bone marrow sucked out of a needle that was drilled into your hip bone, blood tests and more blood tests, scans, x-rays, wearing a mask for your own protection, lowered immune system, fevers, more overnights in the hospital, chemo infusions, radiation, miles and miles getting to and from treatment, nights upon nights away from your own bed, constant beeping, trouble sleeping, nightmares, worry, wondering if this thing is going to kill you....that's what is REAL to these kids. This is their life, and most of the time, it's a short life.

I challenge you to think about #ChildhoodCancer at least for this upcoming month, and put those thoughts into action. Do something to make a difference for these kids. Please.

#BJStrong #CureForBJRound2 #MollysKids #ChildhoodLeukemia #PediatricCancerAwareness #TheTruth365

Sunday, May 22, 2016

One Decision. The Beginning of the End...One Year Ago

One year ago today, BJ had a normal monthly chemo infusion visit to Levine Pediatric Hematology Oncology clinic. On the way there, we talked about how exciting it was to be down to single digit clinic visits until the marked end of treatment (1/4/2016). It had been a long road and we were finally beginning to see the end! When his blood results came back, we were blown away with the news that his leukemia had relapsed, and was now showing up in his blood stream. That meant that his bone marrow was full enough of leukemia cells that they were now spilling out of his marrow into his blood. After the initial shock, the crying, the "no!!", the "why???", BJ accepted his new battle with utmost grace and bravery. Because of his strong faith, he knew God was in control and he took solace in that confidence.
Another Sunday marks another week of this new existence. BJ has been gone for 11 weeks today. 11 weeks ago we watched the traumatic end and heard the last gurgling breaths he took on this earth, and the silence that followed. He fought hard to the very end, until his soul was snatched out of his body and he immediately saw Jesus face to face. I can just hear Jesus tell him "Well done", and see BJ's contagious smile and twinkle in his blue eyes as he delights in the One who loves him the most.
We grieve for BJ, and it is sometimes overwhelming, but it is grief with hope... Knowing that he's just on the other side and we will have that joyful, ecstatic reunion one day.
What matters most in this world is one decision you make...whether or not you choose to have a relationship with Jesus Christ. (1 John 5:12-13) 

I know BJ would say, "I hope you make the right decision."



Friday, May 13, 2016

Knocked Down - Grief 68 days

The crashing wave of grief. It's so torturously random. It doesn't care when it hits...it just does. Just driving to pick up my daughter and her friends from school, it sneaked up on me and I physically felt knocked to my knees, nauseated, and struggled to hold back the rush of tears I knew were coming. I'd been having a pretty strong day. Until now. Now I just want to scream at the sky and shake my fists. I WANT MY SON BACK!! I want to see him, and hug him, and hold his face in my hands and look into those beautiful blue eyes again, and see the other half of my entire world there. I want to curl up in the corner and stay until this nightmare is over. I want to run to where he is...I want to find him and be there. I want more conversations and meals with him, more vacations with him, more moments of pride in his accomplishments, more dirty laundry piling up in his room, and damp towels on the floor and places to take him, and more wisdom to give him, more everything that should be and now isn't.

It's a struggle at times like this just to breathe. That's no exaggeration. The wind is gone from my lungs and I struggle to fill it back up. Who am I kidding anyway...I'm empty. I poured everything into BJ, and what I had left was dripped into Carly. There's no space in me that doesn't need to be filled.

Jesus.

Jesus.

Jesus.

Monday, May 9, 2016

BJ, Carly, and Mother's Day 2016

BJ was a good big brother. And like a good big brother, he was the only one who could pick on his little sister. A couple years ago, he went down the street in big brother style, to have a talk with a kid who was being mean to Carly on the school bus. That boy never picked on Carly again. BJ was always easy-going, but also he was always so tall, not many wanted to test him. From his first day of school until his last, he was always one of the tallest kids in his classes. As he got older, he became more and more protective. He didn't like to see bullying or kids being mean to other kids. He stood up for many people over the years. He stood up for his little sister, too, but he loved to pick on her. He would jump out and scare her at any opportunity, pour ice cold water over the shower curtain on her, take pictures of her sleeping with her mouth open in the car, and talk her into participating in various shenanigans (like riding a wagon down the driveway). Whatever he came up with, she followed. He laughed at her 'old soul' personality, and occasionally called her "Gladys" because of it. He secretly adored her, and he was her big brother and very best friend. BJ gave Carly a special gift during those 90 days in the hospital. The gift of time together. He asked her to teach him how to crochet. That's something she loves to do, and he knew that's how he could spend quality time with her. I remember sitting there watching the two of them working together... BJ getting frustrated with the hook and how to hold the yarn, and commenting on how Carly made it look so easy. Carly was so happy and proud that she was teaching her brother something, and he was smiling and happy with knowing he was making her happy. She taught him how to do to a chain and a single crochet stitch, and he started making a scarf. He never got around to finishing it, so Carly did it for him. She gave me the scarf for Mother's day...a gift from her and BJ. heart emoticon heart emoticon heart emoticon
I hope Mother's day was good for all the moms out there...moms who have their children here, and moms who also carry this unimaginable pain. I was blessed with 15 years of being the best mom I could possibly be to BJ, and I am thankful for every single minute. Cancer didn't take away our love. It's still there, as strong as it ever was.