I have had so much on my mind lately.
So many things make me question my worthiness. I don’t even know. I don’t even know what I want to say. Usually I pull out my journal and just write until my hand cramps. Everything that comes from my head through my fingers. Usually it doesn’t make sense. But I need to get it out.
So that is where I am today.
First. I have missed the Band so much. I am so grateful it is back together again!
I was fired last year from a job I HATED! but loved at the same time. I was a teacher in a 2-year old classroom. I loved my kids. Even on the worst days they made me smile.
People left, got new jobs. People were hired that didn’t like the way my classroom ran. They didn’t have the heart for 2-year olds. They accused me of some shady shit and state got involved. It was bad. I cried every day for a few months. I was terrified!
I mean, this is what I know I was put on this planet to do!
And it was taken away from me and ruined by some 18-year old snot nosed little bitch who didn’t want to work where she was told. I could go into a rant about entitlement here but that would be another post for another day. Ultimately she made up things that just weren’t true.
And to deal with it, I was fired. I was HEARTBROKEN! I was losing my kids. I couldn’t tell them why. I couldn’t tell the parents why. It was absolute bullshit! I was so hurt and angry. These people I worked with I thought were some of my best friends!
Guess what? I’ve talked to them maybe 5 times in the last year. They don’t care; I didn’t matter.
That is when I get into my head. See, I have heard my whole life that I don’t matter. That I am not good enough. That I am ugly and clumsy and not proportioned right – and too skinny, and too fat.
I was told I was stupid.
I believe all of these things to be true.
If the people in my life who are supposed to love me the most say these things to me as a child, they have to be true.
I don’t have relationships. I have people around me who I know I am not good enough for. I was just starting to actually build some self-confidence, believing that I was worthy of a friend.
Once again, I was told I am a terrible human; I don’t deserve friends, don’t deserve to do what I love.
I really thought my ‘friends’ wouldn’t disappear. I thought I might actually matter enough. And reality, once again, slapped me in the face.
It made me realize that I don’t have a single true friend. Someone I know I can call any time of the day and talk or cry or not talk or laugh.
I constantly feel like a burden. I don’t have a relationship with my own sister. Sure, I love her, I want to be her friend, but I am not even worthy of that. I feel so incredibly alone….. Even surrounded by people.
I know if I weren’t there, no one would notice. Or they’d be talking crap about me.
I have a new job now that I absolutely love and I work with some great people. But my walls are even higher than ever now: I can’t let anyone in. I can’t be devastated like that any more. It’s crushed me.
It’s happened more times in my life than I can count.
And here I am, rambling again.
I even suck at writing. I just wish I had a person. Someone who really cared. Someone I could give all my secrets too. Even the ones I am not so proud of. The ones that make me terrified.
I just want to feel worthy of someone.
To know that I matter.
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.
A wise woman told me to write up my story and tell the hell out of it. So, here I am.
Sometimes, I feel like I have the only kid like mine. My son was diagnosed between 3 and 4. He is one of 3 I have, with special needs. For the time being, I’m focusing on my oldest.
We knew something was not right with him. He threw an 80 lb. mattress across the room at me. How does a 3 year old do that? He never slept. He would have meltdowns and throw things at me. I have gotten black eyes from everything from a book to an army boot to the back of the head.
Thankfully, I had a wonderful doctor tell me how to deal with the meltdowns and those came less and less often. However, he would wander. We had two incredibly scary events where he wandered off when he was 5, but he had angels and off duty police officers watching out for him.
When we got the Autism diagnosis, I knew nothing about Autism. Most people equate it to the movie Rain Man. I had never seen the movie so I had no clue. All I knew was Doug Flutie, an NFL football player, had a cereal that’s proceeds went to autism awareness. The only reason I knew that is because I saw the commercial once while my husband was watching a game. That’s all I knew. Nothing else.
So, the journey was rocky and hard. The first year my husband was stationed in Korea, so he was not around to learn what I did.
I relied on “friends” I thought that I had to help. Instead, I got investigated by CPS (child protective services) for making everything up. The only thing that was founded was that I was stressed. (Gee no idea why???)
My son’s first year in school was horrible. Open classroom and he would have meltdowns. They did not want to deal with him, so 5 out of 5 days he went to school, he was sent home early. I had no idea what I was supposed to be doing or how the school should have been handling him.
Thankfully, the school he was moved to had a wonderful Spec Ed teacher that knew what she was doing, to this day, I will still kiss the ground that she walks on.
He improved and stayed in school. Had messy moods and lack of sleeping so we had to join the medicine bus. So many doctors and specialists, “you should do this” and “don’t do that and this and that.”
The kid is a loving, sweet amazing kid. He has a hard time showing that. He has many co-morbidities along with his autism. ADHD, ODD, Anxiety, depression, hypermobility, OCD, etc.
In our journey with him, we realized he wasn’t like most kids with autism. So many can use an iPad and it’s nothing. A phone and no problem. With my son, he can not tell the difference between reality and what’s on the iPad or phone. We tried. We tried so many times, so he could be like his friends or brothers. But it ultimately turned out so, so, so, so bad.
When he was 11 a child that bullied him at school told him that triple x rated stuff on the internet was bad and if you looked at it you were super special because not everyone’s computer can look at it. Ever since that day, my son has been fixated on it. At 11 he had no idea what it was, just that it was special and not everyone could see it. As he grew into puberty it got worse and worse. I still don’t think he knows exactly what its supposed to mean to a person, because his thinking age is around 10, but he knows its bad, he’s told his therapist it’s bad. He’s tried to look at it on the internet at school.
We had everything on our cable blocked so that he could not watch it or order it and somehow he got around it and we had a $900 bill. (I’m still drinking coffee to cope with that one)
Now he’s in a dark, dark place. He’s obsessed with death. He writes and writes and writes about death scenes. Then he tears them up. He talked to his therapist, but he sees no problem. We can not even let this child watch cop TV shows it’s that bad. Nothing to do with magic, or death.
My husband and I have been watching his behavior as of the last 2-3 months and I’m not liking what I see. Neither does my husband.
His moods are very erratic. One minute he’s happy, the next he’s angry and ready to fight. Then he’s happy. (Note: he has not touched a soul, just has gotten angry with words) These mood changes make me think he’s bipolar. We were warned that he probably was a few years ago. We knew it was coming.
Now we’re questioning the doctor, because my husband and I are so completely and mentally drained from dealing with his moods and trying to keep his brothers from upsetting him. The doctor is trying to tell us that he’s making it all up and that we just have to deal with it. My first thought, no lie, was, “The fuck you mean deal with it? I’ve BEEN living with it! We came to you for help on how to KEEP dealing with it, asshole!” I, of course, did not say that, because I was too tired.
This kid has been in-patient 7, lost count after that, times for being bullied and being suicidal. I’m scared to death something is going to set him off. Granted all sharp instruments are kept under lock and key. We continue to try and understand what is going on, but our son can not tell us because he does not remember the mood swings.
His doctor said, because he does not feel bad for being angry and mean, he is not bipolar. DUDE, he’s autistic, he’s not going to feel bad.
I had 2 major surgeries and he bumped what I had surgery on, I started crying and he didn’t give two craps. That does not mean he’s not bipolar!
It’s hard to keep him busy. He gets bored with puzzles and crosswords and TV, because we have seriously toned down everything that he can watch. I’m just at a loss on where I should go from here. There’s probably a lot I left out of his story, I’m sorry for that.
Here’s another twist on his story. He legit thinks he’s from another dimension. He thinks he is a female from another dimension, that he will leave to find when he is 18 years old. There are artifacts all over the world that he has to collect in order to remain safe in this other dimension. He thinks that the here and now is just temporary. Because of his beliefs with this, he can not watch or read anything that involves fantasy. Because he can not and will not be able to tell the difference between what is real and what is not.
His therapist and I had a long talk today about it. I had to stop from bursting into tears, because I have never heard of another child like mine. I explained that to him and asked what do I do. He said I do what I’m doing… Be mom.
It did not help when he said that in the 13 years that he had been doing what he does, he had never met another kid like my son.
Sometimes, being a mom is rough as hell when it feels like no matter what you do, it’s out of control. You know all those books you read before you have kids? I never read any chapters on Autism or special needs and I sure as hell never read any on how to deal with this kind of life for your child.
I guess I should add that I am dealing with my own depression and anxiety right now. My anxiety is off the charts and my shrink threw me into counseling. Didn’t even ask just threw me in. I also have a chronic illness and it flares up in the form of pain when I’m extremely stressed out, the last 3 months I’ve gotten little relief.
It’s sad to say at this point, I’ll deal with me as it comes. I just want my son to be okay. I know I need to worry about me, too. If he is okay, then I can be okay.
Basically, I’m writing this because I just need to know I’m not alone. I’m so tired. My gut instinct with this kid is never wrong. My gut says he needs help with this anger thing and his doctor is being stupid.
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
The first time I was molested, I was 6 years old. My step-dad was a controlling, abusive asshole and had been grooming me over the few years he’d been married to my mom. It started as tickling, then moved to a touch here, me touching him there, and everything you can imagine in between.
At 6, I had no idea this wasn’t normal interaction. He was the only dad I knew.
At 8, I knew how to give a blow job, at 10 he was attempting penetration (poorly), at 12 when I got my period, I got worried. A substitute teacher covered a chapter on sexual abuse in health class and I realized that this wasn’t normal at all. I told my mom that afternoon, he moved out that night, I got lots and lots of counseling.
At 14, I was raped by a 21 year old that was my “boyfriend.” We met through a mutual friend, he got me drunk on Everclear and told me if I didn’t let him put it in one hole he was gonna put it in the other, whether I liked it or not.
I thought it was a compelling argument.
I remember he had big speakers under his mattress and he put on something with a shit ton of bass and it made me so nauseous that I spent 20 minutes puking on his back porch. I didn’t tell anyone. In fact, I continued to date him for an additional 6 months.
During that time he fantasized about moving to Alabama (where 14 is the age of consent) getting married and having babies with me. At the end of those 6 months he nearly got arrested for threatening a secretary with bodily harm for not allowing him to bring me flowers to my class… in middle school.
My mom found out and then I spent 4 weeks as an inpatient at a juvenile psychiatric facility. I started my long journey of anti-depressants and self-medicating.
At 15, I walked over to a boy’s house that I had a crush on to “hang out.” We were making out and he got my pants off. I let him know I wasn’t interested in having sex so he decided that putting his belt inside me was a better option? I was known as “belt girl” (probably still am, honestly) for a number of years after that, to our group of mutual friends.
At 31, I got locked into a hotel room with a smooth talker (stalker) who had me convinced we were in love. The next 8 hours were filled with things I never want to remember and that my brain won’t recall. I left sore and mentally broken, but I never told a soul (until now).
These are of course only the major offenses. I’m not including the literal hundreds of unsolicited dick pics, “accidental” gropings, catcalling, and unwanted sexual advances that occur from randoms quite often.
Why didn’t I report it at the time?
Well it depends on the occurrence. The first time I didn’t know any better, the second time I was in love, the third I was embarrassed and ashamed, the fourth I was terrified of ever seeing him again. I definitely didn’t want a court case. I never filed charges on any of them. Even the long-term ones.
I remember vividly talking to a counselor who warned me of the long court process to press charges against my dad, how it was my decision (AT 12), and whether they should file charges with the DA. Seems like something an adult should’ve decided, no? That stayed with me through all of my assaults. I felt powerless and guilty. I blamed myself for my poor decisions. Surely, I mean, it was my fault, right?
So now PTSD is a real thing I live with every day as a survivor of multiple sexual assaults. The triggers are never expected or convenient. Depression and anxiety go hand-in-hand with that. Once, a psychologist mentioned her surprise that I didn’t have a personality disorder, so there’s that, I suppose?
This is why the #MeToo movement is so vitally important.
The shame, the bureaucracy, the headaches, the guilt, it’s not worth reporting. This is what I’ve been told time and again as a victim. Maybe not in those words, but certainly with that intent. Someone didn’t want the paperwork and i didn’t want the trauma of retelling my story time and time again.
As we have traveled (and travailed) through our journey (ha!) with infertility struggles, I’ve learned a lot from the infertility blogs that I’ve read, and from our family and friends. While I do have to put myself on hiatus from infertility blogs on a regular basis, I am so thankful that we have not been alone through this continuing nightmare.
I had a conversation recently with my mother about my blog, and why I choose to make such a private issue so public by putting it all online. Well, if one person finds the Lord, learns anything about their own infertility and what to expect, or is helped in any way whatsoever, then this has not been in vain. That may mean just helping someone who is not infertile to understand what the people around them are going through.
Or letting someone several years into this roller-coaster know that they are not alone, either.
As others have done for me, I will do for them. This post is in that vein….
…Depressing. There is no end to the feelings of failure, shame, and envy. Every Mother’s Day, Father’s Day, or any other important holiday that passes without a baby in our lives is a kick in the teeth. Some days simply getting out of bed is too much effort. But we do it, so as to appear normal.
…Frustrating. To not be able to do something so simple is incredibly frustrating. We cannot do what our bodies were designed to do, and everyone around us can.
…Humiliating. Everyone has seen parts of me that should be private. Everyone knows intimate details of our sex life and feels that discussing them is totally acceptable. Our pharmacist is nosy. Our doctor asks questions that make me blush, and I am not easily embarrassed. There is no modesty in infertility. Even at our very thoughtful clinic, I am stripped from the waist down and given a sheet roughly a half yard wide to “cover” up with. My bare butt faces the door.
…Learning to laugh. A man who loves you when Clomid makes you grouchy and when you have to prop your hips up afterward will love you through anything. If you can discuss cervical fluid and peeing on a stick, he’s a keeper. If we don’t laugh at the absurd, we will cry over everything.
…Isolating. Even though over 10% of all couples in the US experience infertility, you may never meet or talk to another. None of your friends can fully understand, and your family may not try. When your infertility is all you can think about, they may not feel comfortable talking about it at all. Our infertility is never mentioned for the prayer requests at church. It is the elephant in the corner at every baby shower. In the waiting room of our fertility clinic, no patients make eye contact, ever. Infertility is not something you tell folks about unless you know you can trust them with your heart.
…A learning experience. Not many things give you the chance to learn to self-inject medications and learn words like hysterosalpingogram or ovarian drilling.
…Painful. Physical changes make my body hurt. Side effects cause aches, pains, and headaches. Injections and blood draws hurt, internal ultrasounds and hysterosalpingograms are very painful. Childbirth actually sounds like a cakewalk after some of this.
…Strengthening. If I can handle this, I can handle anything. So can my marriage, and my faith. Infertility is not for wussies.
…Taxing. “Trying” or “practicing” sounds fun, right? Try it for about two weeks and see how romantic you feel. Don’t forget to time it just right and to prop your hips up afterward.
…Disappointing. Every holiday without a baby, every month with a period, every new check up at the clinic because last month was a bust is a huge disappointment. Telling my husband we’ve failed again is miserable.
…Scary. Words like premature ovarian failure, premature rupture of membranes, incompetent cervix, and intrauterine fetal demise are terrifying for anyone to hear, especially when it’s your ovaries, cervix, or baby.
…Hope. Hope is new again each month, thank God.
…Expensive. Having to give up on your dream to have a baby or having to plan your baby around your credit line is just sad. Especially when you’re paying good money for useless insurance.
…All-consuming. If you don’t learn to stop and find other outlets, infertility will eat you alive.
…Unfair. 14 year old junkies have babies they don’t want. People who lock their kids in closets get pregnant all the time. Why can’t I?
…Eye opening. Many men will leave you when they find out you can’t have babies. The extra-awesome one will stay, look you in the eye and say “That’s okay.”
…Finding a way to trust God and His timing even when I am on the floor, crying and broken.