by Band Back Together | Nov 13, 2018 | Allergies, Anger, Anxiety Disorders, Celiac Disease, Childhood Diseases And Disorders, Coping With Anxiety Disorders, Digestive Disorders, Family, Feelings, How To Help A Parent With a Special Needs Child, Living With Food Allergies, Mental Health, Parenting, Pediatric Caregiver, Pediatric Mental Illness, Pediatric Trichotillomania, Special Needs Parenting, Trichotillomania |
This evening the conversation goes like this:
Me: Sam, would you like to have beef stew for dinner again, like Daddy and me?
Sam: Yeah.
Me: Great. Dinner is in ten minutes.
I am pleased that Sam says yes. I am pleased that he tried the stew at dinner last night. Trying new foods is a sign of health in our son, while rejecting foods is a clue that he is doing poorly.
We sit down to dinner. Sam looks at the bowl of stew in front of him.
Sam: I won’t eat this.
Me: Why?
Sam: I didn’t ask for it.
I’d sorted all the vegetables in the pot and put the best-looking ones in Sam’s bowl, because he won’t eat them if they are mushy or misshapen. Ian, Ruby, and I can live with less-pretty vegetables.
Me: Yes, you did.
Sam: No, I didn’t!
I’d poured Sam’s serving of broth out of the steaming pot five minutes before dinner so that it would be just the right temperature for him. I’d taken out four chunks of meat, cut them each into smaller pieces so their size didn’t freak him out, and then tasted a small piece from every chunk to make sure that none of them had that gamey flavor that stew meat sometimes gets, which would also freak him out and end dinner with tears. There had been three volcanoes already today, many more this week, countless more over the years we have been navigating life with Sam.
I close my eyes and take a breath.
Me: I would like you to eat your stew.
Feeding Sam is a delicate experiment, not only because a particular meal might fail if something is not right, but because a single bite of something he finds unpleasant will eliminate that food in his diet. It happened with a spicy bite of chicken when he was five, and now, two years later, he gags at the sight of chicken.
Sam, his voice rising: You didn’t ask me if I wanted this.
Me, my voice rising: I did ask you, Sam. Daddy and Ruby heard me ask you if you wanted stew.
Feeding Sam’s four-year-old sister Ruby is easy. She likes most of what we put in front of her and is eager to try new foods. As I argue with Sam about his dinner, Ruby quietly gets to work on her bowl of stew, the bowl of stew which I did not check over, taste or otherwise de-fuse before serving to her.
Sam, whining: I want to eat noodles.
Me, stony: You can have noodles if you eat your stew.
Sam stares hard at me, then lifts his spoon to his mouth. His small pink tongue darts out to lick the spoon, then disappears. He squinches up his face and says: The broth tastes bad to me.
The words pour out of my mouth hot and mean: You liked it yesterday.
Sam starts to cry. He beats the table with his fists. Ian warns Sam not to let his volcano explode. The developmental pediatrician had given us this metaphor for Sam’s angry meltdowns. There had been three volcanoes already today, many more this week, countless more over the years we have been navigating life with Sam.
Sam yells tearfully that it isn’t fair, that he didn’t ask for the stew, that it tastes bad to him. Ian gives him a second warning. Something shuts down inside of me, as though my anger abruptly recedes, and I gaze toward the stewpot, thinking placidly about throwing my bowl of stew against the purple tile backsplash behind the stove. About how the stew would splatter, how the shards of the blue Heath bowl would fly. Sam lets out a howl and my anger floods back into the foreground. I excuse myself and go to the living room.
I sit on the couch, sadness and fatigue eating at the edges of my anger. Most days, Sam’s issues threaten to overwhelm me. Now seven, he has had a sleep disorder since birth, and gets up for the day, every day, hyperactive, between 4 and 5 am. He is anxious, depressed, irritable, hypersensitive and over-reactive, and has been all of these things — in some way or another —his whole life. We recently found out that he also has celiac disease and cannot eat the gluten in wheat, barley or rye, and so now is on a strict gluten-free diet.
This is the son we have, the person we have to work with every day. Most of the time we do not feel equipped to do this, do not feel confident in handling what comes our way from minute to minute. I am, however, a competent researcher, and so I seek answers. This is one thing I can do.
Instead of working at my actual job, I’d spent my morning emailing with doctors at Stanford University, the University of California at San Francisco and the University of California at Davis, trying to find a physician who understands the relationship between Sam’s anxiety, depression and morning insomnia. We have seen psychologists, psychiatrists, a developmental pediatrician, a holistic pediatrician, a sleep disorders clinic, an occupational therapist, an osteopath, a chiropractor, and a speech therapist — the latter for the oral-motor disorder he developed because parts of his mouth were so sensitive he could not let his tongue go there. No one, except for the speech therapist —who assured us that correcting Sam’s speech should only take three or four years of twice-weekly therapy — has an answer for us, for our child.
When Sam was four, he picked obsessively at his head until it bled, and chewed his fingernails to nubs. When he gnawed off an entire toenail, we took him to a psychologist for help with the anxiety that drove him to tear off parts of himself. The psychiatrist heard his story and said that Sam didn’t need therapy: he had sensory processing disorder, difficulty taking in and figuring out what to do with everyday sensory information: sound, sight, taste, smell, touch, awareness of his body in space. That explained why Sam gagged at certain smells, could not dress himself, had fine and gross motor delays. Why, as an infant, he had cried at loud noises, at sunlight, at the feel of wind on his face. But why?
We are cautious in the way I imagine an abused wife is around her husband when he’s been drinking, certain he will explode, wondering only when. No one could tell us this. I’ve asked them all.
One psychiatrist told me, when I asked him why: We must have a certain epistemological modesty about what it is possible to know. In other words, suck it up and live with it. But I can’t— I need to know why my son is this way, so that I can help him live a less disordered life. I can’t see where modesty about my quest to help my child serves any purpose. Except, perhaps, that it might preserve my own sanity.
I feel so often that I am failing with him. Trying so hard and still failing.
At home we do what the occupational therapist calls a sensory diet to manage his sensory integration dysfunction, and what the developmental pediatrician calls cognitive behavioral therapy to redirect anxiety and rage. We are trying to control his behavior, mood and sleep disorders with nutrition — he takes fourteen different vitamins and supplements twice a day, and sits in front of a 10,000 lux light box every evening. We have adopted strict timetables and firm boundaries and clear expectations because Sam thrives on structure. In these ways, we prevent as many meltdowns as we can.
Still, we are cautious in the way I imagine an abused wife is around her husband when he’s been drinking — certain he will explode, wondering only when.
Ruby finishes her dinner and comes in to see me on the couch. I lie down with her delicate body on top of me, her back to my front. Cuddling. Snugging, as she calls it. Loving. We giggle and I start to feel a little better. She is my love, my light. I feel fortunate to have her, my normal child, my sweet girl.
Me: I feel lucky to have you.
Ruby: I feel lucky to have you too, Mommy.
Sam comes in. I ask if I can talk to him. I send Ruby to the kitchen in search of a gluten-free pumpkin muffin (Omnivorous Ruby has more-or-less happily gone gluten-free because of Sam’s illness). I tell Sam that I feel sad because I’d asked him if he wanted stew for dinner, and I gave him the best vegetables, and I cut up the meat and tasted each piece to make sure it was okay for him, and he still wouldn’t eat it.
His face crumples.
He starts to cry.
I pull him onto my lap and lie back down, hold him on my body the way I’d held Ruby. He is larger and more full of sharp elbows and wiggle. He starts to sob. I stroke his arms.
Sam digs an elbow into my ribs and wails: I hate you, you never do the right thing, I wish you weren’t my mother.
My hands freeze and my heart locks up. I think: I hate you. And I’m going to bite off a chunk of the inside of my cheek with the effort of holding those words in.
I take a deep breath and try something I learned in parenting class. As he howls on top of me, I say, with as much gentleness as I can muster: It sounds like you had a hard time with dinner tonight.
He doesn’t hear me through his sobbing.
I sit up and move his body off mine, position him next to me and look directly into his eyes. Say again, slower: It sounds like you had a hard time with dinner tonight.
He takes a ragged breath and sighs in two parts. Says: Yeah. Dinner was hard for me.
My heart melts a little.
Lock, melt. Lock, melt. This is the tachycardic dance in my chest every day I live with Sam. Sometimes it feels like I just can’t take it anymore, can’t handle the overreactions, the accusations, the sobbing, the vast despair. I don’t sleep enough to withstand it. I ask why he is crying. I think: I hate you. And I’m going to bite off a chunk of the inside of my cheek with the effort of holding those words in.
Sam: Because I feel so bad.
Me: What do you feel so bad about?
Sam: Because you did all that work for me and I didn’t eat it.
I melt the rest of the way. His despair becomes something to feel compassion for, not something hateful, hateworthy. Sam starts sobbing in that way that is not easy to stop. I put my arms around him.
There are things we could, should have done differently with Sam. We should have gotten help with sleep earlier. We should have figured out his sensory issues when he was a baby, not a four-year-old. We should have found a more aggressive pediatrician who helped with referrals and diagnoses. We should have taken special parenting classes sooner.
And there are still questions. Should we medicate him? With what, when his doctors can’t agree on what is wrong? Could we have found his celiac disease earlier? Are we, as our pediatrician once suggested, making too much of this? But here we are, on this couch, in this moment, and we have not done these things or answered those questions, and I have to decide how to respond to the howling boy next to me. My boy.
I murmur: It’s OK. I love you. I even loved you when I felt sad about the stew. I will always love you. I’m not mad. It’s okay. It’s okay. It’s okay.
His sobs start again. I hold him.
Me: It’s OK. Everything is going to be OK.
He cannot stop crying.
Ian comes in and says it is time for Sam’s supplements. That Sam already has two warnings. That it’s not OK to let his volcano explode like this.
Me: No, this is different.
Ian stares at Sam for a moment, taking in the ragged breathing, the small face wet with tears and snot. Then he says to me: Earlier when Sam was upset we did some squeezies, and Sam felt better.
Squeezies are the sometimes-ineffective and sometimes-magical joint compressions that the occupational therapist taught us to do on Sam. They are helpful during a meltdown when words don’t work. I often forget to try them.
I sit him in my lap and squeeze him firmly: shoulders, upper arms, elbows, forearms, wrists, hands, each joint of every finger. Press the flat of my hand into his stomach, compress his ribs from the sides, gently press his head down into his neck.
He begins to calm down. Still taking uneven, gulping breaths.
Me: We will get help for you. For this bad feeling inside. We are working on it.
Sam: Okay, Mom.
I squeeze his smallest, last finger. He catches sight of a toy catalog on the floor and asks to look at it, sitting up next to me on the couch. He takes a shuddery breath. Mommy and Daddy both try our best. We don’t always get it right. But we are always trying our best.
Sam, opening the catalog: Is that a bouncy house?
Then, with more enthusiasm: Is that a pirate sandbox?
He smiles.
We look through the catalog together, and then I tell him it is time to go take his supplements. He does not argue. He looks at me.
Sam: I wish you could do my bedtime reading tonight, Mom. Daddy was giving me warnings. He thought my volcano was exploding.
Me, thinking for once it is Ian and not me who has missed a cue: It wasn’t your volcano, Sam. This is something else.
Sam: Daddy thought it was the same thing.
Me: Mommy and Daddy both try our best. We don’t always get it right. But we are always trying our best.
Sam: Okay, Mommy.
Sam goes into the kitchen. I sit on the edge of the couch alone for a moment.
I take a deep breath, and then go back into the kitchen to find my family.
by Band Back Together | Nov 8, 2018 | Abandonment, Abuse, Adult Children of Narcissistic Parents, Anxiety Disorders, Blended Families, Child Abuse, Child Sexual Abuse, Coping With Anxiety Disorders, Emotional Abuse, Estrangement, Family, Feelings, Loss, Mental Health, Narcissistic Personality Disorder, Stress |
I’ve been debating joining Band Back Together since the day it opened. I was leery, because good goodness do I have a lot to say. Sometimes it’s hard to know where to begin. And hard to let yourself. Some things are hard to pull out of the box under the bed. It’s not easy to give them attention or light, even if sometimes that is necessary.
So I’m here. And fuck it all. I’m healing. I’m better. I’m stable and mostly happy. I got shit to say.
My mom once showed me a song by Lucinda Williams called Sweet Side. She said it reminded her of me. Which is sort of bullshit. I’ve been pretty emotionally fucked up but never quite to that extent. In any case, I found it sort of ironic that my mom should point it out to me. She mistakenly believes my internal wounds were created when I was molested.
They weren’t.
They were her made by her alone. I’m honestly not affected by the molestation. I have been, but that pain has long since been banished.
The worst damage is the quietest.
It is the person who should love you unconditionally repeatedly telling you, “I love you, but….” It is being thrown out into the streets at the age of thirteen. It is being told you are insane; a bitch, violent, angry, a failure, unstable, and worthless in words and actions for most of your life. It is trying, with EVERY OUNCE OF LOVE in your child’s body, to gain the affection of your mother by any means necessary. Then, when that fails, to gain -attention- by any means necessary.
And when that fails, shutting off to the world.
It’s being sent away, over and over as a child, on the word’s “I can’t deal with you any more, you are going to your (Aunt’s/Dad’s/Grandma’s) house.”
It’s your insane family hosting an intervention.
To tell you to lock yourself in an insane asylum. For the horrific sin of being angry. When the forty-year old virgin who still hides in her mother’s attic, the woman who had seven kids (five outside of her marriage) lied about the whole thing, watched her husband beat and molest her children and ignored it willfully, and the former heroin addict tell you that you need help, something has gone terribly wrong.
Having one of the most insane stick up for you at the least expected moment. Finding shelter in his rage. Seeing the correlation. Black sheep meet black lamb. Those surreal moments that buffer you from the storm.
It’s moving in with your step-dad when your parents separate. Because he’s the better parent.
It’s being kicked out of your bedroom and moved into the corner of the living room, so your mother’s boyfriend can have an office. Or moving into the spider-infested, insulation-free shed outside. Because they are tired of you inside. Or a 3AM, walk outside to get to the restroom, because you aren’t welcome to live IN the house with the good people.
And finding the front door locked.
It’s a birthday party alone, while your family went on vacation (again) to New Orleans without you. During Mardi Gras. It’s a sweet sixteen where they haul in a musty old pull-behind trailer and tell you, “Happy Birthday, now GTFO” and you find yourself with a ‘birthday’ basket of cleaning supplies and a rank, disgusting trailer parked in the back yard. Your new home. Have a paper umbrella, it’ll make it right.
It’s making the (sane) decision to not speak to your mother, ever again, at seventeen. And being talked out of it. Stupidly.
It’s having the power cord leading to that same trailer be pulled repeatedly in the middle of the night by your mother’s boyfriend. Leading to HOLY FUCK IT’S COLD IN HERE. Leading to ‘Stop lying! He didn’t do it!’
It’s trusting, against your better judgment, to go home when your life collapses and you are sick and losing your mind. And finding yourself taken advantage of, and then thrown out. Again.
Of trying to get your life back together, only to have your money depleted entirely. Of going back to school only to discover that every day seems to result in another, “I TOLD you I couldn’t watch the kids, I have an appointment”
Of visiting a friend in California to get away from the building stress and anxiety, to find yourself homeless and stranded and papers being filed in your absence claiming you abandoned your children. Of having to explain to your children that you didn’t. And that you meant it when you said you’d be gone a week.
Of living in a shitty motel in the middle of the Mojave desert, subsisting on ten dollars a week in food to make it back to get your kids. In waiting a year to see them again because of your mother’s treachery.
Of gearing up for an epic court battle only to have her mysteriously drop them off with ‘a secret, don’t tell your mother’ and have your beautiful, sensitive daughter burst into tears because the pressure is too much. In hearing her, through her sobbing, explain that she’s afraid Grandma would be back to take them again in a month, because that’s what she said.
Holidays are bullshit. They remind me of the family I don’t have.
They remind me of going to Thanksgiving to drop off my kids to spend time with their Uncle, and be entirely ignored by my family. They remind me of being asked how much a vacuum was at Home Depot without a ‘hello’ or a ‘Merry Christmas’ preceding it and without even so much as a ‘have a nice day’ on leaving.
I spent the last two years with just my partner during the holidays. It’s been years since I so much as got a birthday card or a Christmas card. I don’t expect them, and I don’t need them. But I kind of wish I got them. It felt odd. It still feels odd.
This year, I’m going to cook a turkey, we will all will sit down to it and be thankful for what we have. And I will continue to love my children fiercely every day, no matter how angry and hurt they are inside. No matter how long their own healing process takes. No matter what silly, childish things they do. Even if they break something I love, or snark at each other in a hormonal rage, no matter if they make horrible decisions or great ones. I’m going to be there and love them.
The fact is, that no matter how much she’s done to me, no matter how much she has injured my heart, no matter how many times she’s screwed my life through her manipulations, I love her. She’s my mother; I can’t help it. I miss the love a mother is supposed to provide. I miss the safe haven. I miss the support system.
I miss the person you call when you are at your wit’s end and need advice. I have nothing like that. I’m it. I’m my own self-contained support. If a kid does something baffling, I’m on my own. If I’m drying out the turkey, I’m on my own.
I haven’t spoken to my extended family in years. I haven’t spent more than five minutes in conversation with my mother for two. My life has NEVER been better. It’s stable, I’m back in school. My kids are healing, slowly and painfully, but they are healing. We have our finances in order and our life is generally upwardly mobile. But still…
I want a mother so desperately it hurts.
And I can’t make that feeling go away, no matter how much I want to.
by Band Back Together | Nov 1, 2018 | Anxiety, Cesarean Section, Family, Fear, Feelings, How To Help A Friend Whose Child Is Seriously Ill, Infectious Diseases, Intrauterine Growth Restriction, Medical Mystery Tour, NICU, Pediatric Caregiver, PICU, Pregnancy, Prematurity, Preterm Labor, Pulmonary Hypertension |
Since 2003, the March of Dimes has led Prematurity Awareness Month activities in November as part of its Prematurity Campaign.
The goals of the campaign are to reduce rates of premature birth in the United States and raise awareness of this very serious problem.
Please, we encourage you to to submit your own stories of prematurity with The Band.
Four years ago I would not have paid attention to an event like Prematurity Awareness Month and I likely would not have even known about the work of the March of Dimes. Today I am proud to be a supporter of the March of Dimes and their important work.
On March 8, 2007, my niece, Lucy Clare entered this world after my brother, Jonathan and sister-in-law, Mary, made the difficult decision to have an emergency c-section at 25 weeks gestation. In the weeks leading up to Lucy’s arrival, Jonathan and Mary knew that there was a chance Lucy would have to arrive early. She wasn’t growing and the doctors said that if she didn’t reach 500 grams (1.1 pounds) there would be very little they could do.
We all held our breath as Mary went to each ultra-sound appointment, hoping that this baby (gender unknown to all but them) would grow – just a little bit more, just a few more grams. They were briefed by the ob-gyn on what outcomes to expect if she was born at 32, 30 or 28 weeks.
A few weeks prior to Lucy’s birth, they were given a tour of the NICU so that they would be prepared for what they may encounter. At their last appointment, on March 8, they were told they had to make the difficult decision – wait another week and risk that she wouldn’t survive in utero or deliver that day knowing that the hospital had never had a baby that small survive.
Wanting to just give Lucy a chance, they opted for the c-section.
Lucy was a micro-preemie in every sense of the word. She weighed only 400 grams (14 ounces) and was just 10 inches in length. At her lowest, she dropped down to 290 grams. She was given surfactant therapy – its research was funded by the March of Dimes – for her lungs.
She breathed with the help of a ventilator for five weeks before being switched to CPAP for two months and then on nasal cannula until she was discharged. Lucy’s time in the hospital was filled with ups and downs – it often seemed like one step forward and two steps back. She faced many of the challenges that preemies in the NICU face: infection, retinopathy, the struggle to breathe on her own, a heart condition and feeding challenges.
Lucy spent 182 days in the hospital – six long months – before she joined her family at home.
Today Lucy is a happy, funny, easy-going 3 ½ year old who adores her big sister Stella and is starting to enjoy her baby sister Mallory. She loves books, colouring, watching Yo Gabba Gabba and dancing. But she still faces many challenges: she takes medication for pulmonary hypertension, she relies on a feeding tube for 100% of her nutrition and she has deteriorating eyesight. She has therapy appointments with a feeding specialist, physiotherapist, and attends weekly sensory motor sessions.
The work that the March of Dimes does through education, Prematurity Awareness Month, March for Babies and so much more, is crucial to helping all babies have a healthy start. Our family considers itself lucky that Lucy is here today and we want to do everything we can do to raise awareness for prematurity-related issues. It’s our chance to give back just a little bit.
Visit www.marchofdimes.com to find out how you can help!
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 24, 2018 | Family, Feelings, Love, Marriage and Partnership, Marriage Problems |
Yesterday, I found within me a sharp so bitter it could twain my marriage and dismember a family.
In one gestalt twist of grievance, I realized I had the capacity to cut relationship with the detached precision of a pathologist.
My scalpel tongue gleaned against my clenched jaw in clinical consideration of the Y Cut as The Husband and I hit the first immutable impasse of our marriage like a hearse.
It was entirely mutual.
The smell of potential decay cleaved in my nostrils like carrion.
I stood in the rigor mortis of that moment and knew I had to yield or the damage I would do to my marriage would be irreparable.
My pulse races now even to reconsider how concrete was that tomb.
An expansive, vile id lurked inside me like a dark mine ready to deploy.
The Prince of Peace lives there inside me too.
It was the moment just before the moment too late.
It was taught, tight tension as sharp as a guillotine.
It was entirely mutual.
I bit my tongue hard enough to taste salt.
I drew in Light.
I put down being right.
I put away I don’t want to.
I shelved blame.
Through Grace,
by His strength alone
I chose Love.
Mercy pardoned us as we forgave each other the trespasses against us.
Nothing.
Nowhere.
Is more important to me than this marriage, this family and a life together.
by Band Back Together | Oct 22, 2018 | A Letter I Can't Send, Domestic Abuse, Emotional Abuse, Feelings, Helping Someone In An Abusive Relationship, How To Deal With A Self-Destructive Friend, How To Help A Loved One Who Self-Injures, Psychological Manipulation, Self Injury, Self Loathing, Self-Destructive Behavior, Teen Self-Loathing |
In my teens, I was toxic to everything I touched.
I didn’t mean to be – I just had a lot of pain inside and was too young to understand the connection between that and the reckless behavior I exhibited. You understood it and prayed for me, always hoping I would see the light.
It wasn’t that I was a trouble-maker as so many claimed. Yes, I vandalized an elementary school in my home town, thoughtlessly claiming the rooftop with my giant ‘My Name Was Here.’ Yes, I ran away once, all the way to Tennessee, and yes, I became a teenage mother at the age of sixteen.
Maybe I was a trouble maker.
And then into my twenties, the bad choices and reckless behavior chose to continue itself. I’m sure you remember the destruction I left in my own life after post-partum depression led to the loss of my two children.
Years 23-29 are a blur – six years in a hellish nightmare that I had convinced myself I deserved. You screamed at me that I deserved better, that my children deserved better. I assured you that I believed you – and stayed in the nightmare anyway, because that’s what I deserved.
I lied to my friends and my family. I became a stranger even to myself.
The worst part was marrying my abuser on your birthday as if to honor you in some sort of way. ‘Look Mama. I did it. I married what I earned.’ I spent my entire twenties hating myself for my teen years – and so another decade was lost to my toxicity.
I didn’t mean to lose those years with myself and my children.
It wasn’t until my thirties that I started to feel like you know – maybe I gotta start forgiving myself in order to act right. I read all the mushy quotes, convinced myself I was beautiful inside and out, walked away from everything that caused me harm and for a while I was so happy.
I was so brilliantly happy and dazed by how very blessed my life was – I even found myself being loved by someone who never raised his voice or hands to me.
But here I go again – unable to forgive myself and unable to stop the path of destruction. I can see it happening. I know I should stop it. But I can’t. Not until it’s all burned to the ground.
Because I’m toxic.
And I don’t know that I ever won’t be..
