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 10, 2010 | Cancer and Neoplasia, Cancer Survivor, Coping With Cancer, Testicular Cancer |
I’m on an airplane, heading home from my recent vacation with my wife and most of her side of the family and writing this entry on the notepad on my iPhone. That is the dedication I have for BAND BACK TOGETHER!
How did this entry come to happen? Well, I blame Aunt Becky. Why didn’t I have a link for Aunt Becky?! Umm, if you are reading this chances are that you know her. If not, well…I got nothing. I follow that crazy (crazy AWESOME) lady on Twitter and love reading her blogs. Mostly cause she says fuck a lot and you don’t hear women talk that way. Come to think of it, she might be a dude. Eh, I would still follow her…or him.
She tweeted how she wanted to make a shirt that said “CANCER IS BULLSHIT” and I told her I would help with the design. This led to a stream of DM’s of why I wanted to help and what it meant to me. So I thought, what else is there to do on an airplane ride? Well, besides watching “Breaking Bad” that is. Here it goes. This entry is going to be a bit different from how I normally write so please don’t judge! This is serious, we’re talking about my nuts here!
I was a month away from turning 31 and 2 weeks away from my first anniversary with my wife. It was Halloween and we were at a party at our friend Nick and Lauren’s house. I had probably 4 beers and we were home in bed by midnight. Everything was fine. That was Halloween.
November 1st was a different story.
I woke feeling like crap. Well, I actually felt like I had to take a big crap. Gross, but that’s the closest thing I can equate it too. As the day went on, I started to feel worse. I decided to take a shower because for some reason that always helps me feel better. I like to sit down in the shower, that’s just how I roll. Well, when I did that I felt a sharp pain…in my nuts. Actually it was just my left nut if we want to get technical about this. I decided to give myself a self-examination. Right nut, smooth and pliable just the way it should be. It seemed to be normal size, from what I remembered. Okay, left nut…fuck. The thing was 4 times the size of the other and hurt like hell to even squeeze ever so slightly. I called my wife to look at them. She saw them and how there was a noticeable size difference and we were off to the hospital.
After waiting for 2 hours in terrible pain due to all the assholes that ran to the ER, convinced they had H1N1, I finally got see the doctor. He poked, prodded and jostled my testes. Then, he ordered an ultrasound.
You know what’s awkward? Having your nuts scanned by a female nurse while your wife is in the room. Yup, not cool. When I returned to my room in the ER, I was met by my doctor who had already scheduled me an 8 AM appointment with another doctor who would be talking about the surgery and my cancer.
Wait…WHAT THE FUCK!?
Yeah, it was laid that smoothly on me. My wife and I walked to the car (it was 10 o’clock by now) and I made a phone call to my mom. I told her I was okay, but that I there was something that I needed to talk to her about but I needed to go home and sleep and that I would talk to her when I knew more. She cried a bit, but respected my space.
Next day, we met with my Urologist. He had red hair and was kinda weird. That’s all that I can tell you about him. He is just kinda weird. Whatever, he showed me my scans and told me my options. I knew surgery was necessary so we were all for that.
They would be removing my left nut the next morning at 8AM. My tumor was directly in the middle which was good because the doctor feels like that stopped any spreading of any kind. He was very sure of this.
However, I was still going to go through Chemo or Radiation therapy.
I had my nut removed and then had two weeks off. It was nice to have the time off but at the recovery sucked. They had to give me a hernia, take the nut out and then seal me back up. I couldn’t lift, sit up or get out of bed for about two weeks without being in pain or uncomfortable.
I was lucky that I didn’t have to go through massive sessions of chemotherapy. I chose chemo because one doctor said for the type of cancer I had and where it was that it was the best treatment and he stood by that. Also, I chose it because I thought the radiation oncologist was kind of a douche.
Chemo wasn’t so bad. Yeah, I did have to sit in a chair and people gave me the look of death when I walked in for treatment. Old people seem to think that no one young should have cancer and when they saw me they thought the worst, so they would give me this look. I hated that part of being in the clinic.
I finished my treatments and now I do blood tests every three months and scans and blood every 6 months for 3 years.
What I hate most about the scans is that every time I have one done, for about a week I am on pins and needles waiting to hear the news. That time is the worst.
It happened during this economic struggle that everyone is going through. We were hit hard and our savings was completely destroyed. We are a young couple that is trying to save for a house and get started, but life decided that we would have to grow up really quickly. You can always earn more money, right?
We want to have kids and now it seems my number of fellas down there has been cut in half. We were taken from being this happy couple that is young and didn’t have a care in the world, to a couple that is now having to think about freezing sperm just in case! My wife was my rock during this whole thing. She was there by my side and never left it. I even had a medal made for her that says “Best Wife Ever” so that title is now officially taken and no one else can have it. My wife has that shit LOCKED DOWN!
Cancer is BULLSHIT! I definitely agree with that.
However, I have learned a few things since it happened. I now know that I am not invincible and that things can happen. I knew that when I broke an arm or something but that’s different. When you are told you have something life-threatening, it really makes you stop and look at life. I may be a “single jingle” (I want a shirt that says that) down there now but I am still alive and that’s what matters.
There are times that I lose it and cry. Shit, it happens to us all. I could be fine one day and think about it and how if I hadn’t caught it I could have died and how I would leave my wife all alone and it makes me sad. But, I am still here. I am alive and kicking and not going to let my cancer run my life.
Cancer IS BULLSHIT!
by Band Back Together | Sep 9, 2010 | Reactive Attachment Disorder, Special Needs Parenting |
I am the mother of a RADish.
A RADish is a child with Reactive Attachment Disorder (RAD). RAD is an attachment disorder that results from a traumatic event in a child’s early life. Elle was adopted from Russia and spent the first nine months of her life in an orphanage. Her birth mother delivered her, terminated her parental rights, and left Elle at the hospital. A month later, she made her way into the Baby House in Kursk, Russia.
The orphanage was nice, as orphanages go. It was clean, old and colorful in a Russian kind of way with fairy-tale murals painted on the walls. But an orphanage is an orphanage, with too many children and not enough warm, loving arms to go around. When I first saw Elle, she was expressionless. The eyes that looked back at me had no emotion, just a blank face. The only time I ever saw her laugh or smile was when she was walking. She didn’t particularly like to be held or rocked. She was independent at an early age.
I thought all of this was normal for a child, and for Elle. What did I have to compare her to? We started having problems with her when she was 5, the summer before she started Kindergarten. She would become sullen and withdrawn if things didn’t go her way. She started taking things…from stores, my room, etc. She would argue until the cows came home and dinner was a nightmare. When she was really angry she would mark on the walls with chapstick and rub Vaseline all over her bathroom.
When we adopted Bunny, she took Bunny’s things and hid them. All the while denying that she had done anything wrong. Then she started taking food. She would get up in the middle of the night and raid food out of the pantry. Not just chips and cookies, but powdered jell-o, baking chocolate, and sugar. We found leftover chicken and frozen salmon stashed away in her closet, along with things she had stolen out of my bedroom and office.
It came to a head when we decided to move a year ago. I received a call from the school’s safety officer. Elle had admitted to stealing two cell phones and an iPod. The iPod was hidden in her closet and I could bring it back to school. As you can imagine our horror, we could see a life of police stations, courts and jail in her future. We couldn’t understand it. She is incredibly intelligent and charming. What is wrong with our child?
She had been in therapy for a few years, but we weren’t making any progress. It was finally suggested that Elle’s issues were beyond our therapist’s experience and we needed to look for a different one. Life was unimaginable in our house, Elle was out of control and I wasn’t seeing much joy or hope. We took her to another therapist who diagnosed her with bipolar disorder…based on a 50-minute discussion with us.
No, something wasn’t right with this. Consequently, we never went back and kept looking for an answer.
I finally stumbled across it while searching the internet. Reactive Attachment Disorder. It gave a list of behaviors and almost every one fit Elle to a tee. We read, and read, and then read some more. Could this be it? Fortunately, there were a couple of therapists in town who specialized in RAD. A couple of phone calls later and we had a new therapist.
The therapist began working with Colby and I. The first behavior to change had to be ours. We needed to learn to parent differently and be a rock-solid unit before we could even tackle Elle’s issues. Then we started to work on Elle. We learned about the Circle of Trust and how with Elle, her circle had been broken.
When “normal” babies cry, their mothers respond and meet their needs. The baby is happy and learns to trust that mommy will always be there to provide for them. Not so with RAD children. Their circle has been broken. Elle cried, but because of multiple caregivers, her needs were not met. She learned she couldn’t trust anyone would meet her needs, so she learned to provide for herself…because she was the only one she could trust.
She carries around a lot of anger and abandonment issues. You may never see them, but they are buried deep behind her brown eyes. RAD children target their mothers. For years she has stolen and destroyed my things and directed her anger and resentment at me. She adores her daddy, but she can’t bond with either of us. Especially me. For years, friends and family have wondered what was wrong with me. She was a charming child, why was I so hard on her? Why couldn’t I give her a break? My anger and resentment spilled over to my relationship with her, with my husband, with my family, with Bunny and with myself. I couldn’t take it anymore.
But when Elle was diagnosed with RAD, maybe, just maybe, there was a light at the end of the tunnel. We got help, and finally, things started to get a little better. Elle was in a different school, one that worked with us and understood why we took her out of school every Friday afternoon for therapy, and why we are taking her out of school for a week to go to a RAD camp.
We have come along way, but we still have a long way to go. Elle has built a brick wall around her heart and won’t let anyone in. The wall is so strong she hides behind it anytime she has to deal with an emotion she doesn’t want to deal with. She doesn’t know how to love. She doesn’t know how to trust. But we are working on it. We are working to chip away at the wall. I have fundamentally changed my life in the last year. Colby and I have fundamentally changed the way we parent in the last year. Elle has made some progress, but she still has a way to go. We have a way to go.
But we will bring the wall down. One brick at a time…together.
Elle, I know you are reading this post. You know I love you with all of my heart. Together, we can do anything.
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
