by Band Back Together | Oct 30, 2018 | Arthritis, Childhood Diseases And Disorders, Chronic Pediatric Illness, Family, Feelings, Grief, Group B Step, Health, Help For Grief And Grieving, How To Help A Friend With Infertility, How To Help A Parent With a Special Needs Child, Infertility, Loss, Meningitis, Muscular Dystrophy, Parenting, Pregnancy Complications, Sadness, Special Needs Parenting, Viral Infections |
Friday’s child is loving and giving.
So why is my Friday child confused and behave as though he’s Wednesday’s child instead? B doesn’t stick to the old English poem. He got confused along the way. I know exactly when that was. When he was twelve days old and caught the dreaded meningitis.
That was the worst of times.
We were told he wouldn’t survive the night, but he did. We were told he would never recognize us or smile or manage any basic functions, but he did. I won’t bore you all with the setbacks, the heartache every night, the months spent in hospital, how none of our friends visited, the long, drawn-out wait to get home.
Those are for another time. Maybe.
This post is about now, this minute, how I am feeling. I have never written anything like this down before, but I am an avid follower of Aunt Becky and she told me to, in all her posts about Band Back Together.
I don’t know how to make this a nice flowing post rather than a list of illnesses, surgeries, appointments and setbacks. I suppose I’m having this issue because that could be how you would sum up B’s life so far. I know that’s how others see him. When we meet for a Girly Catch-Up date, it’s never, “how are you all?” it’s “what’s B having done now?”
My friends are great but I’ve been labeled The Coper; or she who deals with all that life throws at her. B is labeled as ‘poor thing.’ Not a great label for an intelligent, reasonably active eight-year old. We have settled into this comfortable way of coping that I don’t know how to let people know that sometimes I am not coping very well.
Maybe Band Back Together will be the friend’s ear I can bend.
Anyway, back to my child of woe.
We were lucky to get pregnant with B and we were lucky to have a nice ‘normal’ pregnancy. B was born on his due date and then things started to go wrong.
B was labelled with Torticollis and Talipes within the first few days of his life.
It threw us but we had just come to terms with all of that when B caught the dreaded Meningitis, caused by late onset Group B Strep. Again, not to bore you with that hell of a first 6 months, B managed to cling on and then thrive. He was considered a ‘floppy’ baby due to, what we figured was the brain damage caused by the meningitis, so all his milestones were delayed. He also couldn’t work his muscles properly, including swallowing, so B was fed through a gastrostomy.
When we thought we were through the worst year of our lives, we were hit with another side swipe, B’s hip was dislocated and deformed, it needed immediate surgery. That surgery was deemed successful and so we carried on. We even began to relax a bit and focused on having some more children. B still had some problems, mainly with his muscles, but we had got him off his gastrostomy and, again, he was thriving.
So, we relaxed and concentrated on other issues, such as my infertility and the long rounds of IVF, but again another story for another time.
During these years we were eventually blessed with twins Z and E. All seemed well in our household, the girls were healthy and B was doing well.
Then, when B turned 6 we were knocked over again by the diagnosis that his hips weren’t right still. So major surgery followed, which involved B being in an hip spica for 8weeks (not great for a 6yr old boy and a mum who also has 2yr old twins to look after) and wheelchair bound for many months more.
However, we all survived, well I am a’coper’!
B was just beginning to get mobile again when a doctor noticed his face was looking wonky.
A year of maxillofacial appointments followed which ended with us being knocked over again by the diagnosis of Juvenile arthritis. The arthritis had been attacking his jaw joints for some time unnoticed and had now deformed them to the point of major facial surgery required.
However, they cannot do this while the Arthritis is active, so cue major arthritis drugs. Now B has to have weekly injections, for years, that are lowering his immunity, great.
However, we are coping!
Now factor in his hips update as well last week and we are cooking! B’s hips have, again, grown wrong and further major surgery is required, probably in January. Again my lovely son will be wheelchair bound because of his hips, injecting for his arthritis, struggling to eat because of his jaw deformity and tiring due to his muscle issues. Again, I have taken on this diagnosis and have dealt with it and I am prepared for it. What I didn’t expect was for his orthopaedic surgeon to say that things don’t seem quite right with B’s muscles and they seem to be getting worse.
Well, yes, he has hypotonia from the meningitis. obviously his muscles are not right.
That is not what he meant, the surgeon knows of B’s past history and thinks there is something else affecting him.
So that is why my gorgeous, bright, loving son is now being tested for Muscular Dystrophy and the medical view is that he probably does have it.
WHY?? I mean, hasn’t B gone through enough?
Haven’t I gone through enough? Haven’t all our family gone through enough?
B has, at the moment, hypotonia, hypermobility, hip problems, arthritis, jaw problems and now possible MD. Any 1 of these diagnoses would upset a parent, my son has all of them.
I am not coping any more, outside it looks like business as usual, but inside I am crumbling. I look at my friends’ children and, selfishly, wonder if I can pass on just one of B’s problems to them. Why did he get all of them? Even the doctors can’t believe how unlucky he has been. When friends worry about their child’s broken wrist, I think that I wish B could do cartwheels and break his wrist like that as well.
Then I feel bad for not having sympathy for them. Then, I overcompensate for my guilt by offering help and being the friend they can always turn to. They take that help because they know that I am a coper whereas they aren’t. They make half-hearted promises of help in return but, they have their own families to look after and B and I would need too much help. My hubby is pretty hands-on with the house and the kids but he has never been to a hospital appointment with B, never.
I feel it is B and I against the world sometimes.
So, there you have it, my child of woe.
This has been quite therapeutic, I feel like I can now go out into the world and carry on ‘coping’ again.
by Band Back Together | Oct 15, 2018 | Anger, Anxiety, Compassion, Family, Feelings, Forgiveness, Grief, Help For Grief And Grieving, Loss, Murder, Parent Loss |
I will never forget that sound.
The crunching of the packed snow beneath my feet, dissonant with the throbbing in my ears from my racing heart.
He sought me out. He wanted my forgiveness. Wanted to talk to me…to see in my eyes that forgiveness was even possible.
I sought out a safe place to meet him. Though I knew with certainty that he wouldn’t physically harm me, I feared for my emotional safety. My aunt provided that shelter.
Fourteen years prior, he shot my father twice and killed him.
I was two. And in an instant, fatherless.
As I reached to open my aunt’s door, I was stuck between two places. In that moment, with my hand clenching her doorknob, I could move forward or I could retreat. There simply was no in between.
I pushed the door open and the heat from my aunt’s house engulfed me.
He was there. Sitting at the table. I greeted my aunt, shed my coat, and sat opposite him at the table. And I waited.
It wasn’t my turn to talk.
He apologized. His words were much what I expected them to be. I knew the story…the reasons why he did what he did. They had been the best of friends.
I can still see him, rubbing one of his hands with the other, worrying his skin raw.
But his eyes? His eyes expressed his sorrow and remorse in a way that his words never could.
I’m not sure I have ever seen eyes as soft as his were in that moment as he sat there, stumbling over his words, looking to me for encouragement to continue speaking.
I let him speak until he was completely deflated…words expelled like air from a balloon overfilled to near bursting.
There was a familiarity about him. Some part of my brain remembered him.
In that moment I was left to make a choice. To forgive him or to hang onto my anger and hurt, polishing it until it gleamed with bitterness.
It was the moment to choose whether to set him free of his burden or take that opportunity to make him pay. To crush his hopes for a release from even a small part of his guilt.
I didn’t hesitate for a moment. I forgave him.
I made a choice that freed us both.
The easy, predicable choice would have been to hold my anger close, fueling it with thoughts of all that had been ripped from me.
The more difficult choice was to forgive him, to recognize that he was human and that relinquishing my anger would bring me peace unlike anything I had ever known.
His life was already broken. He would never be the person he was before he killed my father.
But my forgiveness? He sat there and asked it of me.
And offering that it to him was truly the fork in my road.
The Road Not Taken — Robert Frost
Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth.
Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same.
And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.
I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I–
I took the one less traveled by,
And that has made all the difference.
*The decision to forgive this man who destroyed my family was my choice. This was the right choice for me. If I were my grandmother, grandfather, uncle, aunt, or mother, I can’t say that my choice would have been the same. That is impossible to know. I can only truly know what is best for me. I love my family beyond words and their strength astonishes me to this day.
by Band Back Together | Oct 9, 2018 | Abuse, Addiction, Addiction Recovery, Adult Survivors of Childhood Sexual Abuse, Alcohol Addiction, Anger, Anxiety Disorders, Child Sexual Abuse, Coping With Anxiety Disorders, Coping With Depression, Coping With Losing A Friend, Estrangement, Family, Fear, Friend Loss, Grief, Help For Grief And Grieving, How To Deal With A Self-Destructive Friend, How To Help A Loved One Who Self-Injures, Incarceration, Loss, Loved One in Prison, Major Depressive Disorder, Mental Health, Murder, Self Injury, Self-Destructive Behavior, Self-Esteem, Shame, Successful Reintegration After Incarceration |
I’m not usually one to do stuff like this. I’m the creeper lurking in the corner wanting to make friends but never approaching anyone.
But I have a story, and I need to let it out.
I was your typical Midwest teen in 2006. I was 15, went to the movies with friends, spent all the time I could in the band room or wandering around the pastures surrounding our house. Life was pretty good. Then came that fateful day in February.
My half-brother got arrested for murder. My dad and I always knew he’d end up in an institution somewhere. He wasn’t raised in a good home like me and he had a hard life; we thought he’d get some time for burglary or car theft.
But never this.
After he was arrested, all these issues from the few years when he lived with us surfaced again, all the abuse he put me through before mom came home from work. My school never did Sex Ed, I didn’t know. For years they were buried…he hadn’t lived with us for awhile, but when he was arrested, the memories came back.
But I never told anyone, until now.
I failed my first class ever that year. I just didn’t see the point in doing any work when spring came around and my brother was in court and here I am in school while the people around me are complaining about how the school food sucks or how some teacher took their cells. On the outside I was the same as always, but inside I didn’t know who I was anymore.
I made it through the year, when my mom yelled at me about my D grade, I thought about ending it that night. Just swallowing a bottle of pills, but I was able to get online and talk over all the stresses with my internet. Life was stabilizing again.
Then came the day I can never forget, and I still have trouble talking about.
June 11th 2006, 8 o’clock on a Saturday morning, I got a phone call from my best friend.
She told me that 3 students from our school and our Spanish teacher were lost in the ocean while swimming on a school trip to Costa Rica. The body of one of the students had been recovered already.
Sunday, they recovered the body of one of my closest friends. The third student was recovered Wednesday. Sr. C wasn’t recovered until Friday.
All I remember for those summer days was sitting in front of the computer refreshing news pages, hoping and praying that maybe Andrew, Jessica, and Sr. C were still alive, then it was Jessica and Sr. C, then just Sr. C. Finally it hit me. Four people I knew, went to school with, acted in plays with, sang in the choir with, played in the band with, learned from.
Dead.
They lived in Kansas and they drowned in the goddamned ocean in Costa Rica.
It was 2 days before my 16th birthday and instead of going to a movie with friends or something on a Friday night I was sitting in a hot crowded auditorium with some friends and Andrew’s brother, crying, wishing it was all just a dream.
Saturday, I didn’t get out of bed. Sunday, my mother prepared all my favorite food for dinner, a beautiful cake, my sister was there, I didn’t eat anything. I got a car. I didn’t care.
Later that week, I was on a bus full of high schoolers heading down to Texas for Andrew’s funeral. Everyone thought I was okay, I acted normal for my friends. But when they played Amazing Grace at his funeral I lost it. Amazing Grace? What’s so amazing about a 17 year old losing his life?
The freshest memory of Andrew is sitting with him on the floor of the band room on the last day of school listening to Good Riddance by Green Day. Any time I hear that song, even now, 4 years later, I cry.
My junior year in high school things were back to a semblance of normal, but band didn’t have Andrew. That spring I started cutting because I was so sick of being numb and the pain let me feel something. It wasn’t deep. There are no physical scars, but it allowed me to feel.
Then I went off to college, started smoking to get away from my crappy roommates, slept any free time I had. I didn’t have a social life outside of band and my dorm room.
Next year in college, I rented a house with a friend of mine, and I started cutting again. One night, I finally left scars. The next morning, I called the schools Mental Health Services, the next day I was talking to a therapist. I told her part of the story, how my brother was a murderer and my best friend drowned in the fucking ocean. How I almost scratched my arm raw on the first day of classes because I’m so nervous in new situations. How I’m always afraid that the worst is going to happen. She didn’t try and give me coping mechanisms or advice, she just gave me pills.
The pills made me feel nothing, I went through that semester feeling like a shadow. I tried to tell her that I didn’t want the pills, she said they were the best option for me. So I stopped. They weren’t helping the depression, the anxiety, or the suicidal thoughts. I was on my own again.
During spring break, my significant other of 4 months cheated on me with another friend. She had the dignity to tell me but it didn’t really help. I started drinking, and picked up smoking again. I failed all my classes.
I am not proud of who I was, or of what I did. I have regrets and I can’t forget those regrets.
But I am stronger now. I switched schools and I’m back to living with my parents. I don’t really see my friends much anymore, but I’m becoming who I need to be. I’m trying to learn to cope with my feelings in a good way instead of just bottling them up inside.
I’m 20 now, an age Andrew will never reach. I haven’t seen my brother in 4 years. I can’t trust anyone farther than I can throw them (read: at all) but I am becoming me. I’m changing the path of my life, some days are bad, some days are good, and some days I wish I could crawl under a rock. I just have to keep telling myself that everyday is worth it, that I am worth it, and that in the end I will be me.
And maybe in years to come when I look back at the last four years of my life I can smile and remember good things that happened instead of seeing this crater left by that summer.
by Band Back Together | Oct 2, 2018 | A Letter I Can't Send, Anniversary Reactions, Chronic Illness, Denial, Depression, Family, Grief, Help For Grief And Grieving, How To Help A Friend With Chronic Illness, Loss, Parent Loss |
The following post is from a series called ” A letter to someone who stopped talking to me.” The posts from this series will appear on Stigma Fighters and Bank Back Together.
Dear Mum.
It’s been a while since I wrote you. Six months. What was the last thing I sent you? A postcard, probably. Someone – one of your sisters, my aunts – told me a while back that my letters to you went unopened. Hence the postcards: nothing for you to open (or not open), a pretty picture for you to look at, and less aching white space for me to fill each week. It made it easier – for me at least. Nothing too heavy. News from up here in the north. Family. Friends. Work. Then best wishes for your well-being and family down there.
Phone calls from me ceased when you could no longer take them. When you could no longer remain awake at the phone or even, perhaps, know who I was. You used to love texting, before illness took its final hold, but the special large screen phone we got you so you could take and make calls from your room languished unused and uncharged.
I cherish the times I came to visit with you, on my own or with Pam. The time I took you to Washington Wildfowl Trust to see the ducks. Holding your hand. Sitting with you in your room while you slept. I remember the moment (not precisely when but how it felt) when the question “When will I go down next?” shifted into the knowledge I would not.
And then the phone call telling me you’d gone. A week or two of uncertainty, doubt, fear. Then plans to be made. Hotel rooms and a hire car. Routes. What to wear. That was okay. I’m good with that stuff.
And then there I was, back in Liverpool one last time. Squeezed in the back of the funeral car. Your face staring at me all the way to the church from the framed photo they’d propped at the back of the hearse. Carrying your coffin – no weight at all really – up the aisle of the church I remembered so well. The priest’s eulogy. “She was a saint. Literally, a saint. She always put others first.” And I wanted to scream.
YES SHE WAS. SHE DID. AND LOOK WHAT IT FUCKING DID TO HER.
I didn’t scream out, of course. I stayed quiet in my seat. I own my share of the blame. The depth of your need terrified me and I left you to get on with it all. I wasn’t there when you needed me to be. It was easier to pretend I didn’t notice. To visit occasionally and then not at all. To phone occasionally and then not at all. To write letters, and then postcards, that said very little and needed no reply. I’ve learned a lot about being there these past years but too late for you and me. There is no going back but I would do better by you now.
I don’t believe these words will find you now any more than the postcards did. You are gone. Not gone somewhere. Just – gone. But there are tears in my eyes and perhaps that stands for something.
Martin
by Band Back Together | Oct 1, 2018 | Addiction, Alcohol Addiction, Anger, Coping With Losing A Friend, Denial, Feelings, Friend Loss, Grief, Guilt, Help For Grief And Grieving, Loved and Lost, Sadness, Trauma |
One of my oldest friends died last night.
She died and I am angry.
I want to kick the dog. I want to scream at the baby. I want to pull out my hair and punch holes in the walls. I want to ram my car into something, anything. I want to choke the birds who are singing and tell the Universe to fuck off because how dare it be a sunny and beautiful day today. How dare the world keep spinning now that two little boys are to grow up without a mother. I have this untapped chasm of rage I didn’t know I could possibly feel.
I’ve never felt so angry in my entire life.
My oldest friend died last night.
She was 26.
Post written February 10, 2008
by Band Back Together | Sep 19, 2018 | A Letter I Can't Send, A Letter To My Younger Self, Abandonment, Anniversary Reactions, Family, Grief, Help For Grief And Grieving, Hope, Loss, Love, Stress |
Just did some spring cleaning and deleted all of my Facebook messages.
The oldest messages I had were from Michael, who was a good friend to me.
Sadly, he passed away a few years ago and I regret not making the time to get together again, and I’m sorry that I didn’t know he had passed until over a month after it happened.
Here’s the trouble — We always think we have time.
Time for that catch-up coffee get together, time for that dinner/ drinks night with that person we bump into at whatever store in town, and we’d really like to take the time to properly nurture that friendship, but we’re busy, so busy! — we’re working, we’re getting married, we’re catching up on our favourite TV shows at home, we’re doing household chores, we could be raising families, and we’re tired, we’re worn out, we’re run down, and we’ll get around to it, we truly will, just —– later.
We might have that family member or friend present on the periphery of our lives, somebody with whom we haven’t always had an easy relationship, and they’ve got stuff going on that complicates things further, and one day, in the future, we’ll patch things up with them properly, we really will, we truly mean to do so. Except we’re busy, we’re so busy, and we’re tired, and we might have our own messy stuff to deal with, and it’s not easy or convenient right now, but we’ll do it, we will, we mean to, at least. Just… not at this moment.
And then suddenly, it’s gone, that window of opportunity to make amends, to say hey, let’s grab that coffee, let’s catch up, let’s grab some emotional spackle and mend the cracks in our strained relationship. Either too much time passes, and the opportunity is lost, or the person passes, and, well… y’know. We’ve missed our chance indefinitely, and we’re left behind with complicated feelings and some weighty emotional baggage that we’ll get around to sorting through — one day.
—- Virtual high fives to anybody who has read this far. You can’t feel ’em, but they’re there.
My mother passed away in February of this year, and I never made a post on here expressly stating so, because condolences are so, so hard. And I’m not looking for them now, either.
Timing-wise, it was inconvenient, as I was 7 days away from starting a shiny new job for which I had really high hopes, and working full time at a “training wheels job” that was getting me re-acclimated with being an active part of the workforce after 8 long months of job-seeking. So I never properly dealt with the unfortunate occurrence, that emotional luggage that I’m sure is still sitting on my shoulders and weighing on me in subtle, almost imperceptible ways. I’m not sure how to go about addressing the feelings that I have. Most days, I’m unable to even completely sort out what those feelings are, and how they might be impacting my daily interactions now without me even knowing.
I know my mom loved me, and even though I didn’t say it often enough, or make enough of an effort to show it, I loved her, too, and I should have made it more apparent, and loved more freely and openly, and made more time to display it properly — not just on days that are societally-designated “love fests” like Christmas and birthdays and Mother’s Day and whatnot.
If any of this resonates with any of you, please, pick up the phone and call whomever you’re thinking about right now, if you can… while you have time.
Didn’t know that your phone can make phone calls, too, and not just send text messages and e-mails? Didn’t know that it’s not just a business tool, and not just it now. It might not be easy, or convenient, but it could be the only opportunity you will ever have. Make it count.
Didn’t know that your phone can make phone calls, too, and not just send text messages and e-mails? Didn’t know that it’s not just a business tool, and not just for emergency purposes, y’know, like calling your loved ones only if you get a flat tire on the highway, etc. etc. etc.? Phone calls can be made without occasion and sometimes the unsolicited ones (not from telemarketers, though… blech) are the most meaningful and memorable.
Do it now. It might not be easy, or convenient, but it could be the only opportunity you will ever have. Make it count.
