this is a project that has been burning a hole in my heart. we all sing our pure and shaky and earnest songs, to ourselves, our kids, our pasts. we sing because we need to hear our voices out loud, because it gets lonely sometimes, because it hurts, because the joy cannot fit in our bodies. mothers are always and never alone. i want to focus on the never part. i want to hear the voices together. i want to start a chorus.
it is that general ache that channels into a hundred kinds of specific. a waterfall of gravity. the floor bending and cracking and finally giving way. that moment. the rise and fall of hearts and bones. the freedom of the loss. the terror of it, the expectation, the folding it in to who we are, swallowing it like a stone. getting it down, then getting up again. i try to shape the darkness into something i can manage and trace and hold in my hand. sometimes, without time to feel it, without form and energy, with only regret and mistakes and twists and turns and the tunnel of time.
there is too much on my resume. my brother and i held a dark and freeing joke between us. whose was heavier, longer, more tragic. and we laughed that last time i saw him, because at that moment, why did it all have to matter? we were here. and then he was not. so mine will always be longer. his, more tragic. and it is the pill of grace i must drink down with cool water.
so a silent storm rattles my balance. and no one can see it. it is too deep inside me. and the world does not care. it came upon me sitting in my car after a doctor confirmed i was pregnant and sick, when i had already had enough of a life i was starting with someone i loved and hated. at the top of a stairwell, hearing the bones on my face crack, with the simple wish not to fall back. the one day when i nearly chose the punishing pangs of hunger over my daughter’s sweet forever. the knock on the door, the message, the package, the call, i am waiting for every second of my life. the honesty that chose me. the sins that mingle with the miracles. the holes of wounds through which i see the slanting light. the weight is a part of me but never a compartment. i have chosen to live in a pool over a maze of locked boxes. even on the days i sink to the bottom, there is a light there, pure and strong and untouched by whatever floats in the water around it.
the beautiful thing happens when we rise. when we become the equal and opposite reaction to grief and worry and loss. when we are humbled and broken and new and hopeful. we leap into love, we defy emotional gravity, we forgive, we live.
The weight of loss hangs heavy in the air.
As a chair once occupied now sits empty.
Yet the weight of glory hangs thicker.
Like a cloak of peace around her shoulders.
She feels this unseen substance, proof of things hoped for.
And knows, though the balance teeters,
This weight of glory makes momentary afflictions light.
she held her childhood like a fragile, baby bird.
tried to hide it from the heaviness that was growing inside her.
the shouts. the hurt. the fear.
the utter aloneness.
but she broke beneath the weight.
little girls were not meant for this.
life isn’t always easy
we hear things
we see things
we experience things
we don’t understand at the time
the dark and the gloom
the challenges and the obstacles
we think we will never get by
we carry this weight on our shoulders
we struggle to see the light
we think things will never change
but you come to a crossroad
to continue on the path you know
this path of comfort that weighs you down
or run in the opposite direction
it’s yours for the taking
it happened one day
my course was turned
i finally understood
she did her best
she gave us her all
and the weight was shed
i embrace it all
it is part of me
today and tomorrow
that is up to me
i believe in myself
i believe in my future
i will do my best
i will give my all
When I was first diagnosed with stage 3 lymphoma nine months ago, I didn’t think my heart could bear the ache. The pain was unimaginable and the despair was so deep I don’t know how I made it through the first days, the first weeks, the first months. As a single mom, my entire focus wasn’t on me, but on my 7 year old son. What do you do when you’re told you have a 65% chance of being alive in 5 years and a 50% chance of being alive in 10 years?
You live. One day at a time. Fully. For myself. And for my son.
With the incredible support of friends and family, I made it through the darkness of those first few months. I don’t cry every day and sometimes I make it through most of a day before something reminds me that I have cancer. It’s often something that my son says to me. When we drive to school in the morning or when I’m tucking him in at night he likes to talk about the future. He talks about the day he’ll graduate from high school, and I pray that I’ll be there to watch him walk across the stage. He talks about going away to college, and I imagine watching him open that letter of acceptance with my heart bursting with joy. He talks about being married and having kids, he even has plans for all of us to live together in the same house. And again, I dream of meeting the amazing woman he will marry and watch him with his beautiful children. Those are the days I cry. Those are the days when I feel the weight of the world on my shoulders.
But I have a legacy to leave for my son. I want it to be a legacy of joy, adventure, love, strength and happiness. We are both living each day to fulfill this legacy.
Marlboro and Musk, that was what she smelled like. I fell asleep most nights wondering where she was, my sister lying next to me in a bedroom at my Grandmother’s house. When she was there, it was worse but I longed for her to be there, I worried for her when she wasn’t. Every day as I turned the corner when walking home from school, I held my breath, “will there be another ambulance at the house?” What excuse would I give my friends the next day when they asked? There were no packed lunches, no checking that my homework was done, no asking where I was going or who I was going with. There was only late night walks to fetch more cigarettes and strange men she would bring in. Never a hug, not one. Never a kiss, not one. Never an “I love you”. Never. “I wish you were never born” was her go to line. Most of the time, I felt the same.
They say the greatest love is that of a Mother, that the strongest bond that exists is one between a Mother and her child. So what do you do when you have never experienced this love? When the safety and security that is supposed to be yours is broken? When the weight of knowing you are forever changed by the circumstances of your childhood, leaves you questioning if you will ever be able to love fully.
I don’t know what it was that kept me from following the wrong path in life. Call it luck, call it divine intervention, call it a guardian angel. I just knew I wasn’t going to allow my life to be anything less than anyone else’s. I refused to feel sorry for myself or to make excuses. I took responsibility for the outcome of my life and chose to make it what I wanted it to be. I didn’t sell myself short or hold myself accountable for how I was treated as a child. I let go of the fact that I could not fix her and let go of the pain and anger. I was blessed with a child and I broke the cycle. I hold her in my arms every day and I tell her that she is safe and she is loved.
“Life is made up of meetings and partings. That is the way of it.”
the weight. it’s been a bit too heavy lately. the weight of death and loss. the weight of wrestling with my own mortality and the mortality of my dear ones. we’re all going to pass on from this life, you know. most of us avoid that thought. we distract ourselves with our own pursuits until something (or Someone) lifts the blinds and we see clearly that life is just a vapor. ever since my father parted two years ago, my heart has gone to the deep place of fear and understanding. fear of losing those i love, but understanding that it is a part of who we all are. i am learning, slowly, to number my days and to carry this weight.
“Number our days that we may get a heart of wisdom.”
Your dream is to go to a big college to become a marine biologist. You are excited. You wait tables for a living and spend that money on whatever you want. You have a piece of crap car that has no air conditioning and barely gets you from point a to point b. You are in a rocky relationship that is going no where real quick and you just keep telling yourself between the I’m sorry’s and the drugs that it will turn around. Your life is a cycle…wake up, smoke, eat, work, party, repeat. And then there is that morning where you wake up and you want to throw up. Not because of the alcohol you drank the night before, but something else is wrong. Its different this time. Smells are intense, your face will not stop breaking out, something is not right. You know deep down what it is…but you are immature and aren’t ready to face that. You are young. Only 18. You just started college and you are hoping to turn your life around to make your life worth more than just the small town you are stuck in. You ignore the little signs. You have an excuse for everything. And then theres the night where you are out with your friends and you get a phone call. A bad phone call about the boy you have been dating for the past 2.5 years. Hes been talking to minors on the internet. You find the emails. Your read them and every bone in your body feels as if it could snap in that instant. Tears stream down your face and you aren’t sure what to do because you know deep down you are somehow linked to this monster forever. You feel in that instant the weight of a million bombs going off in your chest at once. You aren’t sure how to react in that moment so a thousand tears stream down your face, followed by sobs, and the feeling of hurt and disgust. Your friend forces you to take a test. It reads positive. You hide it for as long as you can because you aren’t sure if you are ashamed or just overwhelmed. you move into a horrible apartment because its all you could afford. You are terrified at night to close your eyes because you aren’t sure if the crack heads next door could break in or not. You then go to the doctor. Your first ultrasound. At a time most mothers are filled with excitement you are filled with fear and regret. You wonder how in the hell are you going to afford another life when you can barely keep yourself alive. They pull up the screen and theres a baby. A big baby. You are almost 5 months pregnant and you had no idea. They tell you its a girl. A baby girl. You cry. In that instant you feel the weight of motherhood falling onto your chest and your instincts kick in and you have the urge to protect her. You have to make a choice. You leave him. You work another job. You drop out of college. You pay your bills and do your best to provide for her with every hand me down you can get your hands on and every thing you can get from a thrift store. You are going to make this work. By yourself. Because in that instant of seeing a baby on a screen you felt a connection. And knowing it was a girl the weight of needing to protect her overwhelmed your body and you become a mom right then. And now you still carry some of this weight…every time you look at her, you see him. You feel the weight of these memories every single day. But you also feel the overwhelming weight of success because you have survived and you have overcome that hell. And every bit of that has shaped you into who you are today and the kind of woman you want your daughter to grow up to be.
There was a sudden rush in the air. An eery force. A halt. A permanent one in being able to nurture my baby with milk.There was the unknown. The distance ahead.
Chemicals and murderous rays used to fight a disease. To fight it for me. That still baffles me daily. Limbs and head bound to a table. I was powerless.The weight.
There is some peace now in my body but mostly I am left restless. Restless with the will to live. To live without the weight.
To describe my family as a blessing is both an understatement and a disservice. There are no other people I would rather be with. No one can make me laugh like they do and in sad times (of which there have been too many) no one else can take the weight off my shoulders. The women in my family are that hand I grab on to out of desperation or to hold on to for the next adventure.
Right now my grandma is in intensive care and we’re in that place where we’re fused together… the weight is heavy and there is no other way we know. What we know to do is to come together, to take care of each other… to ease the weight.
I knew from the minute he left my womb that things were different for him. The way he moved, the way he nursed, his sounds, his vibe… I didn’t know what to call it, but I knew it was there. The doctor didn’t listen to me when I told him. Until his 6 month visit, and then he was tested for all things scary, degenerative & terminal. His brain looked large but fine & he looked medically healthy. We were told start him in early intervention therapies and wait to see how he develops. And so we did. And we embraced the fact that our sweet floppy baby was doing things his own way. And we decided to embrace the opportunity to watch him develop in slow motion and celebrate every day and every milestone.
We really didn’t need a label, but we got one when he was 4. When the doctor said Autism Spectrum Disorder we were not shocked or terrified and only a little relieved to have an easy explanation when people looked at us quizzically out and about. It didn’t matter. Sam is Sam is Sam, and he is a most remarkable human
But there IS struggle. There are very hard days. He can be as destructive as he is joyful. He can be as reactive as he is sweet. He can be as exhausting and all consuming as he is absolutely wonderful. We have made sacrifices. We have felt isolated. We have changed the landscape of our dreams. We have asked our incredible daughter to be a willing participant on this wild life ride we are on.
He is one of the most amazing things to happen to me in my life. I have learned more about compassion, acceptance and patience than I could have ever possibly imagined. And I am so thankful with every fiber of my being for this beautiful, brutal life.
I have been feeling the weight of many things recently — the choices of my parents, my choices, how that all has impacted me, over and over. And I come, again, to how I impact my kids. In the past I carried my impact on them as a weight that I struggled under. My son, pictured above, has major medical needs, many of which have brought me to my knees at times, one of which almost took his life, and all of which I have both real and imagined responsibility for. Since almost losing him, holding him near death in my arms, I have had to look my responsibility in the face: yes, our job is to protect them, yes, we cannot do it all the time, yes I will fail, yes, I “failed” this time, and no, these failures are not what real responsibility is made of. Real responsibility is made of meeting the moment, acknowledging our impact, doing our best, remaining accountable to our best and worst moments. And that, it turns out, is a weight that is very bearable. It is also the weight we bear for ourselves, and for all of humanity. To touch ourselves and each other with compassion, not rigidity and fear. To live so that it would always be OK to die. To embrace our interactions as opportunities. To accept failure humbly, and start again.
My husband and I are separating. We told the kids last week. My heart has broken, again and again. They are OK. We are OK. We made the choices for the right reasons, our own very deep soul-level integrity. It is our responsibility to be people who make choices at this level of integrity, for our children, for ourselves, for all of us who live, connected. It is so, so hard. I feel the weight. I feel the rightness. I am scared. I am aware of my children’s pain. I am aware of the legacy of our choices, both if we did and did not make this choice. I am doing the best I can. I know I am up to this task in a way that others in my own childhood were not, I know that that is my gift to my children and future generations, despite the pain. I know I am OK.
And so the weight breaks open, once again, into joy. We are alive, we have this opportunity, we are doing our best. Live. Joy abounds. The weight is the one we chose. It breaks us open into the soft center, into compassion. And then we step into the real weight — the weight of our own bodies, the beautiful dare of inhabiting ourselves fully, of filling our skin and feeling our own weight. We are up to it. It’s what we’re here for.
“Both light and shadow
are the dance of love” ~ Rumi
Heaviness can settle in like darkness. Sadness and worry can sit like stones on our shoulders, but in the light, there is another kind of weight; it can be found in the feeling of a baby in your arms, within a friend’s embrace, in the feel of a child settling in on your lap, in the presence of a strong hand in yours. Laughter goes up and out and then, by it’s own weight, is carried back down to our ears and our hearts. Joy can be so heavy it presses tears from our eyes, love can weigh enough to make you feel as if your heart will simply burst. There is weight to this life; to every joy, every sadness, in every bit of light, and even in the dark. What a gift it is, this weight – it is the reason we can feel this beautiful life at all.
I feel almost fraudulent for the kind things people will say. I don’t mean to belittle any of it, I can just vouch for myself as the mother who openly weeps in the hospital bed beside her child when he’s asleep or struggles so very hard to hold it in when his eyes open and dart around momentarily, lest he sees.
A huge crowd had gathered. There were balloons flying celebrating the boy’s 4th birthday in the room beside us. I remarked how soon we are to Reuben turning 3 and I felt an instant kinship for them. And then as soon as the celebrations had subsided, I saw the crowd of family and close friends dissipate, the nurse was called from Reuben’s bedside “do you want to say goodbye” and the room beside us was cleared. I asked the nurse if the family had gone home but she was unable to answer. I was filled with the overwhelming rush of pain for what the family has just endured and the air was unable to hide what had happened. A new family with a tiny baby has now moved into the vacant room and the daddy sits giving the baby her bottle late into the night, her sweet little cries and their story to me as yet untold.
It often feels like a colossal mountain is lying ahead. You rise to its tallest peak, only to find an Everest has been shoved in behind it. It is as difficult to reach its summit as it is to keep your head above the water in the storm. The weight of water, almost drowning. Bleak thoughts run through, that God might take him away and spare him what he’ll have to go through in life. I feel a distance growing between us and everyone we know, because our lives have so suddenly changed direction. There has been such little time or feeling for celebration. I keep rewinding an endless reel of moments when everything feels normal to feel the full onslaught of the pain that this brings us all. You hear only sorries for his birth when you longed for celebrations of birth.
And yet the human spirit, which often stabs its way through the darkness can bring me back in moments. I may spend an entire afternoon in bed upon hearing a diagnosis, but will pick myself up straight after. I have no choice. I am his voice.
Knowing where you’ve come from helps to understand the journey you’ve taken, to remember the challenges you’ve faced in the hope you’ll never have to take that path again. 5 IVFs, open surgery for fibroids, 72 months of fertility charting, 18 surgeries for my now 6 year old. I am 3 things: Woman. Mother. Photographer. And didn’t anticipate the weight of special needs parenting into that mix. I do not buy into the comfort of not being given more than we can handle. In my shoes, you would do the same.
I wonder, just as with memory, Relief too almost has limited memory for what went before. For on this day, midsummer, and with a beautifully mended heart, that relief has become a reality. These are my feelings over the last 6 years. My own hidden truth. Yet the power of the human spirit is so very immense and we not only traversed that Everest, but soared it.
The endless hours of waiting to be admitted to the operating room can glide by quite easily when you have an entertaining character like Reuben on your hands. So say the doctors and nurses too, being charmed by the little boy in the pink pajamas with huge Elton glasses. I open a beloved book, “A squash and a squeeze” from our favourite series by Julia Donaldson. I approach the end of each sentence, Reuben chirps in with the last word, signing and speaking. I am laughing and rejoicing in the life I thought we could not enjoy together. For the lift of that weight upon our shoulders, that euphoria to come was worth the wait.
The past they say weighs heavily, but I disagree. For me the real burden is not to be found in the past but in the passing.
The passing of time, of days, of those I love, of how I thought things would be.
This relentless passing that evades my every attempt to grasp it is where I am learning to find the light, to feel it and truly know it is there.
Some days this journey weighs heavily on my chest. I struggle to get my breath, to gain momentum, as I navigate uncharted waters. And then the waters are too familiar, currents that have swept over me, again & again. I want to close my eyes, opening them to new surroundings. Suddenly the weight lifts. Perhaps it’s instincts- it feels so natural, as I glide gracefully, calmly, freely. Three bright faces look up to me, six beautiful eyes filled with curiosity. I am strong, confident & proud; these are my children, & we’re learning together, hand-in-hand.
I always thought he was handsome. People would occasionally comment that he looked somewhat like Tom Cruise and he would sheepishly smile, embarrassed. Time multiplied by a hard life has taken its toll, but his eyes are still kind and soft. This man is my dad and he has been battling heroin addiction for nearly 40 years. For the longest time I knew there was a substance abuse issue, but I didn’t know any details and I was also in denial.
There was a really difficult time period 7 years ago: he couldn’t sleep; was frantic; angered so easily; slid in and out of lucid states countered by hysteric ones. He talked to himself constantly and wrote nonsense on everything (himself, his clothing, any surface he could find, including the walls in his bedroom). On one of these days, I convinced him to take a ride in the car with me and we went to the hospital where he was involuntarily committed to keep himself and others safe. He had never been angry with me before, but I could tell in his eyes how he felt so betrayed. My grandfather said, “You have to get all that junk out of his room.” Hundreds of syringes, little bottles of bleach, cooking spoons; I went from “not really knowing” to knowing more than I ever thought possible. He was in the process of trying to quit with methadone and it was making him crazy. My whole life I didn’t know he was schizophrenic and the heroine was his medication of choice. For about 18 months, I wasn’t sure if I would ever see my father again–that man was gone. I didn’t know this new man and it was shattering. So many thoughts, waging war in my mind, wondering, “Is he actually better off using heroine?” And then one day he started to come back to us, and without drugs. I was amazed, and so unspeakably thankful. This time period led to to longest stretch of sober living for my dad since he first starting using as a teenager. He couldn’t talk about it, it made him nervous–the pressure of it all. Four years went by and he had made so many positive changes for himself, I was so very proud. But then one day the addiction was stronger and won.
It has been a year now. The other day he said, “I’m just so tired Marla Jean. How can I keep making the same mistake over and over and over again? I should know better, I should be able to do this.” I am the only person who still believes in him, who is still rooting for him. I used to think that if I was supportive, loved on him, was too patient with him that I would be enabling him. What I’ve learned these last few years however, is that grace is not enabling. Sometimes grace is the most loving thing we can give. So I will continue to give it… and hope…and pray…and wait.
In the deep recesses of the ocean, a chorus woven of one of nature’s most sacred rituals takes place. A mother whale labors, surrounded by the females of the pod. They encircle her, keeping company and keeping watch; waiting and willing the arrival of one much smaller. As the calf emerges, these creatures are attentive and aware. They know that even in the quiet calm of the deep ocean, the first breath is necessary for survival. The chorus observes and, in a moment free of hesitation, pushes that baby to the surface for its first breath should the momma not have the strength to do so. Armed with nothing but the full breadth of nature’s wisdom and their own instinct, these creatures act for another—without questions, without fear, and without doubt. They chorus—just as nature intended.
Nature weaves this pattern of chorus across all which she creates, but nowhere is it more purely ingrained than in the fabric of our children. Children chorus with reckless abandon—they laugh, hold hands, cry—acting on moment and instinct, and giving no thought to the worries of “what if”…What if I overstep? What if I’m wrong? What if I offend? What if she doesn’t need help?
Sadly, we lose our ability to chorus as we grow. Giving over to head instead of heart, we act on what seems safe, instead of what feels whole. But what if we afforded each other the same grace that nature instinctively instills in all her creatures? What if we chorused one another—without question, without fear, and without doubt? What would we see? More importantly, how would we feel?
– Rachel James