by Band Back Together | Sep 10, 2010 | Baby Loss, Child Loss, Coping With Baby Loss, Coping With Losing A Child, Grief, Help For Grief And Grieving, Loss |
A little while after Charlie died, a girl I volunteered with at the Ronald McDonald House shared her idea with me about the grieving process. She had lost her 5 year old to Cancer a few years earlier so she had experience and was already a member of the “Moms of Angels” club.
She said grieving was much like a rock in your shoe.
And you can’t get it out. Can’t take the shoe off and shake it out. It is there and always will be.
At first it cuts into your heel and ball of your foot causing you to bleed and be in pain. Then after a little while, you can wiggle it around and get it into a spot where you can’t feel it too much.
But every now and then something will happen and make that rock get under the heel of your foot – causing you to bleed and be in pain. So you go through life with this rock in your shoe that sometimes causes you a lot of pain and sometimes is just “there”.
I thought that was very interesting at the time. And now I know that it is very true.
I attended a visitation for a friend’s stepdad about 5 years later at the funeral home where Charlie was. I remember our visitation almost too vividly. I remember greeting hundreds of people (seriously, like 500) – local friends and friends who had driven several hours or had flown in for our 24-day old baby’s funeral. It was very humbling. I had been in that room for various visitations over the last 5 years with very little pain. But tonight for some reason when I walked in the room, I felt physically ill. Like I might throw up. I remember feeling that way the first time I went in the church where we had his service (my home church) and that morning they just happened to have a baptism and sang “Jesus Loves Me”. Again, I felt physically ill.
You never know what is going to trigger one of those “Moments” and the moment might not make you cry and get all emotional or anything, but it puts a knot in your stomach and makes your hands shake and just makes you feel that rock in your shoe.
But I’ll be able to wiggle it back out of the way and go for a little while until it decides to get under my heel again. This is how we are able to go on.
by Band Back Together | Sep 10, 2010 | Coping With Losing A Partner, Grief, Help For Grief And Grieving, Loss, Partner/Spouse Loss, Post-Traumatic Stress Disorder |
i’m thinking i should tell my story.
or attempt to.
i am being nudged because there is a new site coming up and it’s about..READY FOR THIS…grief.
all kinds of grief, the grief spectrum. whatever.
anyway, i know about it. way too much. and i also realize this is an attempt, because it won’t be right.
not that it’ll ever be right, but i figure i’ll have to hone this to make it really readable, or good enough, or…
wtf? good enough? for who?
jesus, it is what it is. i write like i write. i feel what i feel. (sense the anger? i seethe a lot, sometimes it is a murderous rage, often directed at my dead husband. it’s a nice side effect of ptsd. as is depression and drinking and eating too much or too little – done all)
so.
january 21 2006.
i feel my husband get out of bed, roll over. “morning”
..i go back to sleep.
(it’s a saturday morning, it’s 7:30 am..yeah, i go back to sleep! don’t judge)
maybe, MAYBE 5 minutes later i hear my son running down the hall, screaming “daddy fell and there’s blood”.
up like a shot, into the bathroom, where he was feeding the dog. water everywhere. did he slip in the water? “No. i passed out”….
calm me to crazed son ”call 911 and then get me some pants.” (i thought enough to ask for pants. i’m great in a crisis.)
husband not in pain, but says he’s having a hard time breathing. so we sit him up (BTW… we is me and a 13 year old scared shitless piece of love). we wait for the ambulance. it seems like hours..under 5 minutes.
i am CALM. SO CALM. i put on pants, i hold husbands head. i speak soothingly to both my guys. i call neighbor to come over to stay with son while i go to hospital. ambulance comes, and as they get him loaded and i see i can’t go in the ambulance, i grab water and my knitting…and then i BRUSH MY GODDAMED TEETH (WTF? what was i thinking?), because i figure i’ll be at the hospital for a while, and. and. and…i can’t remember if i told him i loved him. (drives me insane to this day)
i called my friend to meet me at hospital and took off. got a call en-route that ambulance was changing hospitals…what? why?….so i pull a u-turn in the middle of the street and head to the 2nd hospital. still..calm enough to call friend and tell her. weird.
(Later i find out that the 2nd hospital was trauma center. great)
when i arrive she is there, we go in. i speak to a nurse who IMMEDIATELY brings us into the ER. at this point….well, the dread is setting in. i breathe, say to susan “this can’t be good”.
AND NOW I NEED A BREAK…saving as draft.
(BTW..it’s been almost 5 years. i still can’t breathe, often, when i tell my story. and now i’m back, 6 days later to, hopefully, finish).
and i walk into the ER room that has doctors hustling and bustling (that sounds like a song from Oklahoma) and all i can see/feel/hear/ KNOW is that there is no life in that room. because, the only life i cared about is not there. the doctors kept working on tom as i held his hand and cried and asked for “a xanax, PLEASE”…, but he was gone, we all knew it. and there was a point when i just asked them when were they going to stop, so i could leave and get my son (my son, our son…how was i going to tell him?) and then they stopped. and called the time. and it was truly over.
(crying again. i wonder when i ever will not cry telling this?)
my husband and i met in 1985, married in 1989 and he died in 2006. our son was 13. my son will be 18 on september 21st, and the pain is still acute for him. but we’re going to get tattoos, SO FUCKING THERE! (tom HATED tattoos…we like them)
i’m older than most of you who will read this. i didn’t know about blogging when tom died, i wish i had. it would have helped.
the only thing i regret about that day, in terms of my choices, was the choice to leave my son at home. it seemed right at the time. i believe it was a mistake; we were without each others most important OTHER person at the worst moment of our lives.
i have never written all of this before, and it is filtered through several years. but, it is exactly how it was, because i will never forget it. and there is more to say about that day, and friends and how to deal with grief, for yourself and others, and i will.
i know i will because now i NEED to.
and i trust that this new site will be a safe place for us all.
by Band Back Together | Sep 8, 2010 | Anniversary Reactions, Baby Loss, Child Loss, Coping With Baby Loss, Coping With Losing A Child, Grief, Help For Grief And Grieving, Loss |
Ever since 2000 when our daughter Elli was born with life-threatening heart defects and nearly died three times the first three weeks of her life, I’ve experienced blindsides.
I wish I referred to the movie.
Blindsides are swift and completely unexpected emotional breakdowns, often experienced when sharing your story with a stranger or a group of strangers.
As the parent of a child with special needs, I have shared Elli’s story countless times with medical personnel, school staff, new acquaintances, and random strangers we’d meet out in the community. I have had the opportunity to share our story for some college classes for special ed teachers and therapists, and for potential donors to our hospital.
I never know how those presentations would go. Will a blindside slam me into a teary mush pile this time? Or will I be able to communicate clearly and strongly?
When Elli passed away a year and a half ago, the blindsides changed. They began striking at any time, in any place, doing anything or nothing at all.
Anything.
A wisp of a memory… her sister’s laugh that sounds exactly like hers.
A glimpse of a familiar-but-no-longer-visited place… driving past her aquatic therapy pool.
The scent of the hospital’s blanket warmer, so comforting after yet another general anesthesia.
The discovery of a long-buried personal item… her bath towel.
Anywhere.
…sitting at the piano in church on Sunday.
…driving down the highway.
…laying in bed, drifting off to sleep.
…watching a movie with my husband.
…waiting for my son’s school bus.
At first, they assailed me daily, even hourly. With time, less frequent and more unexpected… except in the fall near the anniversary of her death and in the winter near her birthday. Those are memory minefields.
At first, the pain was bitter, cutting deeply, exposing raw wounds. Now it’s more of a wistful dull ache, a pain of long separation, hidden under scar tissue and wrapped in hope of heaven one day.
Have you seen me? The random weeping girl in front of the yogurt at the grocery store? If you do, would you spare a tissue? I promise, if I run into you, eyes red, face puffy, I’ll dig one out for you.
Where’s the craziest place you’ve ever been blindsided? What helps you get through it?
by Band Back Together | Sep 8, 2010 | A Letter I Can't Send, Baby Loss, Child Loss, Coping With Baby Loss, Coping With Losing A Child, Grief, Help For Grief And Grieving |
[What to say when a friend loses a child is such a mystery. I was the mom at her daughter’s casket in the fall of 2008. So when a friend of mine lost her young son to a progressive fatal disease, I wrote her a letter somewhat like this. When my daughter died, I craved a letter like this.]
Oh my friend. My heart breaks that you find yourself here, where I have walked and wept. Every hour I lift you and your family in prayer, pleading with God to pour out grace and strength and rest over you.
I was so encouraged by the outpouring of support for you and your family at your child’s visitation and funeral. I well remember how exhausting that was, but how much the presence of friends both old and new holds you up in those initial days after. I pray that you drew strength from that love poured from so many who love you and loved your child.
Please consider me a willing listening ear to hear whatever you need to say, or to just sit in silence when the words won’t come. I’ve walked this dark road and would be pleased to walk it again with you, if that would help.
Even now, 21 months later, some of life’s moments still seem surreal. It’s like I step out of life and look at it in disbelief. Can this really be the life I’m living?
The day Ellie died I felt myself split in two. I remember riding in the ambulance with her and yet looking at the scene and thinking, “Is this really IT? Look at the way they are working on her. I think she is gone. Is this really happening? Is this really the way it’s going to end?”
And that numb detached feeling persisted through the funeral planning, the visitation, and the services. Whenever I’d step back into my life, I was saturated with sadness. I remember thinking that I had to figure out how to stop crying because it hurt too bad. My sinuses and eyes were swollen, throbbing, aching. Grief is a physical pain. So I would step back out when it got to be too much.
Ever so slowly, the crying slowed, though it will never stop completely.
Ever so slowly, I could move through a day a little more.
Grief is exhausting. I had no idea. I needed help with food preparation, clean-up, housework, laundry… for weeks. Every task took everything I had. Things I had done before without a thought took every ounce of concentration so that I didn’t leave water running or the stove on or milk on the counter.
At the same time, all those days I couldn’t figure out what was taking so much time and effort. Without Ellie and her needs, the days gaped empty. Again, another surreal element of that time. Those days finding your way through is so awkward. You feel the yawning emptiness in your family: Folding laundry and folding your child’s things for the last time, and then having one less pile of clothes. Their empty bed. Their silent equipment. I constantly looked for what I was forgetting, constantly counted heads because I wasn’t confident I could keep track of everyone anymore.
It took at least a month for my energy to return.
If I may offer a bit of advice? Many will say, “If there’s anything I can do…” Take them up on it. Mention the lawn that needs to be mowed, the dirty dishes, the vacuuming, the leaf-raking, the snow-shoveling, watching the kids so you can sleep, writing thank-you notes (I personally think that a grieving parent should never be expected to send thank-you notes.), doing laundry. It will give you rest and they will love to be of some small help to you.
And in the midst of crying your own tears and asking your own questions, your other children have fears and questions. They are worried for their parents. They make valiant efforts to understand death and funerals and where their brother or sister is versus where their body is.
I write in hope that knowing others have walked through this gives you hope. I hope that you can feel my arm around you as I weep with you.
Love and prayers,
Joy
by Band Back Together | Sep 6, 2010 | Anger, Anxiety, Child Loss, Coping With Losing A Child, Faith, Family, Fear, Grief, Guilt, Help For Grief And Grieving, Hope, How To Cope With Post-Traumatic Stress Disorder, Loss, Marriage and Partnership, Post-Traumatic Stress Disorder, Romantic Relationships, Shame, Stress, Trauma |
As women, we have to learn to listen to our gut. {Even when it’s telling us something we don’t want to hear.} And in March 2010 my gut was telling me one thing – loud & clear – “You must turn this ship around or it’s going to sink!”
I know, right? Clearly, something I didn’t want to hear.
You see, my son was nearly killed in an accident in July 2009 and eight months later, the bones were healing, but I was still broken. And, something had to give. I was bending and bowing under the heavy load I was carrying & I had to make a choice. The first choice that would turn my life, this ship, around was telling my husband the truth. I had to tell him of the awful thoughts that would fill my soul and haunt my nights.
I had to tell the man I love how often I had pictured him dead or dying, with our beautiful, innocent, children at his side. I had to tell him of the times I lied and told him I was sleeping downstairs, when really? I was sitting in one of the kids rooms crying. Picturing them dead. There is no marriage course that prepares you for that conversation. No book that tells you what to say when you’re wife is losing her mind.
I am blessed. And he reinforced what my heart knew and my mind couldn’t comprehend when he hugged me and held me and told me that I needed to call a doctor. {I knew in my gut that this was what I needed, but it was nice to hear him say it.}
You see, I was dying a slow death at the hand of post traumatic stress disorder. At the time I didn’t know what it was, but I knew that anxiety and fear were ruling my life. I was not living with intent.
Post Traumatic Stress had taken over & changed the woman I had once loved. It had stolen my husband’s wife & my children’s mother. I am a firm believer that life shouldn’t be the same after trauma, I expect that. I accept that. But, I also knew that I was not living and I didn’t want to settle for anything less. When you believe in your heart that one of your children is dying, is going to die, may die…there are no books or blogs or words or friendships that are inspiring enough to settle your soul.
And, even after I tucked my boy away in a bed, EIGHT long months later…safely upstairs, without a wheelchair, after a long day of school and baseball practice, I couldn’t shake my spirit of those haunting thoughts. Those reoccurring nightmares, I had when I was awake.
Nighttime would creep up on me like a thief and steal any sanity I had managed to build up in my reserves for the day. It was always worse at night.
The blackness would slip under the door frame and suddenly I would grow weak under the urge to hold my children tightly and scream into the thick air. The thoughts that filled my head were not that of a “sane” woman. I no longer recognized the woman that replaced me when night fell. The fear of losing my loved ones began to grow…and grow…and grow…
I didn’t tell the therapist everything right away. But after a week of visits, I let it all go. I told him that I pictured my baby dying of SIDS every time I closed my eyes. I would sit in her room in the dark on the floor and use my phone to light up her face so I could watch her breathe. I would rock in her room through the night and cry. And torture myself with the thought of finding her lifeless in the morning. A thought that wouldn’t let me close my eyes.
The blanket the boy brought home from the hospital would trigger phantom day-dreams that would leave me shuttering. I could hear him screaming in the night, in pain, even after the pain was gone. I would lay awake at night and watch my husbands’ chest rise and fall with each breath. I would picture how badly my heart would/will hurt when he dies, I would think of losing my parents…losing my aunts. Death consumed my thoughts.
I couldn’t drive in my car without sobbing uncontrollably. Every slammed brake or rushed traffic light would leave me in a puddle of doubt and fear. I was convinced someone was going to hit me, hit us, kill my family…
And, I knew this wasn’t right.
There were times when my mind would convince my heart that I was better off dead, rather than face the sadness the future holds. I would pray to please let me die before my children, my husband…and at times, I would even think “before my parents.” I would remember the agonizing pain of the unknown – as my son was air-cared to the local Children’s Hospital – and I would pray that the demon of memory be taken away from me.
But, as I told my therapist of my thoughts & fears…as I spoke of the anxiety that chased me in the night…the fear seemed to find a place where it could lay dormant. And I was fine with that. For now.
It’s been just over one year since the accident. And I still know that the dormant monster is waiting. Lurking…
And, there are times when I have talk myself off the ledge. Times when I feel the anxiety creeping back in. I accept the fact that life will never be the same. I accept the fact that it’s not suppose to. And, I know that with that change comes baggage, that at times will be too much to carry. But I also know I can face this demon head on, with the help of my family & friends…and even my blogging community.
I am working hard to turn this ship around. To make up for the ground that has been lost. To find my way back to the shore of safety and maybe, just maybe, even learn how to live on the sandy, white beaches of satisfaction.
Someday.
by Band Back Together | Sep 6, 2010 | Baby Loss, Coping With Baby Loss, Grief, Group B Step, Help For Grief And Grieving, Loss |
Journal entry, Wednesday, June 11, 2003
After about an hour, the nurse came to the waiting room where we were sitting, having NO idea whatsoever what was going on… thinking our baby just had a cold or something. She said ever-so-calmly but with great concern, “We have him stabilized, but you have a VERY sick little boy. He was not breathing when we got him from you.” And then we were told we could see him shortly.
***************
My baby was THAT sick? How could that be? Twenty-four hours earlier he was pink and rosy and smell-goody and perfect? Twelve hours ago he acted like he didn’t feel well, but NOT BREATHING? How did I not know that? I’m his mother. I’m supposed to know these things.
Charlie was born 20 days earlier than this-happy, healthy and alive. From the moment he was born, he was wise. People commented on that in the hospital even. He was just alert. He had big brown eyes and a look in them that would melt your heart. In hindsight, he wasn’t meant for worldly things. He was meant to be a protector… and angel.
Back to the hospital. Jason and I went to see him when we were finally allowed back into the PICU. We were gently led to the bed where part of my soul still lives. My six pound baby had ten pounds of tubes and wires and things keeping him alive. I remember vividly not being able to breathe but still not realizing the severity of the situation.
We held vigil at the hospital for the next 3 days. In that time we were told that he had contracted late-onset Group B Strep which had caused meningitis and sepsis. They did a spinal tap which showed his spinal fluid looked like Jell-O instead of water and a CT scan showed most every part of his brain had had massive strokes, including his brain stem.
At last we were taken to the “OH SH*T” room where we were told our baby wasn’t going to live. He wasn’t going to have a first birthday or a first day of kindergarten, would never play t-ball or football or get a high school diploma. He would never meet the girl of his dreams and have beautiful babies and name them after his wonderful parents. In that tiny, dark room, our hopes and dreams were shattered.
On Friday the 13th, the most unnatural day to do this, we made the decision to turn off all support to our pride and joy. But we wanted to do it on our own time. And we weren’t ready right then.
Saturday morning started with my sister coming and bringing all the hats Charlie had received for gifts. For six hours we played “hat of the hour” and changed his hat and took pictures. He was held by us, his grandparents, aunts, uncles, anyone who came by and wanted to. It was a parade of visitors that day and for most it was the one and only time they had seen him. There were enough tears to fill a bathtub from friends who had driven several hours to pay their respects to our son before he took his final breaths. I can’t tell you how much that has meant to us over the last seven years.
At 5:00 on June 14th, 2003, just one day shy of his original due date, we gathered with about 2 dozen very special people in the tiny PICU room and our preacher had a baptism for our most precious son. Charlie was in a beautiful white t-shirt, a green and blue hat, holding his silky blanket and puppy dog. Our preacher spoke a few touching words that I wish I remember and baptized him. My sweet Aunt Diane started singing “Jesus Loves Me” and I remember sounds of moaning and crying coming out of mine and Jason’s mouths that in hindsight don’t seem human.
After everyone left the room, we were left with our son. Our intensive care doctor, Dr. Clark and nurses Julie and Tina there to help with the removal of support. In the next 43 minutes there were tears, kisses, touches, words of love and more tears. We were later told by Tina who was in the room, that as the machines flat-lined, a big ray of sunshine came in through the tiny crack in the curtain. It had been raining for 4 days non-stop so the ONLY explanation was that Charlie’s soul was leaving the room. At least that’s what I’m sticking with.
Charlie was bathed, wrapped in swaddling clothes and taken to the funeral home. Jason and I retreated to our home and opened the door to our new normal. And as our world stopped, everyone else’s went on, waking up to greet their Daddy’s with breakfast and homemade cards and fun on Father’s Day.
We woke up to the truth. That our lives would never be the same.
