learning to navigate the world, j-bear style

Tag: mama bear (Page 1 of 2)

Mental Basketcases

So I do not make any secret that I have PTSD, and that it’s a constant struggle and learning curve much like learning to work with J-Bear’s autism. Unfortunately, unlike J-Bear’s autism, it’s a lot more insidious. When J-Bear struggles we all know he struggles. When my PTSD flips out, it’s very hard for people outside my own house – and sometimes even for them – to know it’s doing so.

This is written proof that I can say it’s being difficult, and that’s putting it gently.

I am not in danger, the people around me are not in danger, etc. I spent years being told I was nothing but a horrible human being, mostly due to the struggles I have with mental illness. Strange, only this one person has ever called me these terrible things but until I had at least some control over my mental state, I believed this clown. The scars that added to scars that already ran deep ache whenever I find myself struggling. I get fearful to confess that I am having a very, very hard time. I get scared that I will immediately be gaslighted or worse, ridiculed and mocked into dust.

That person isn’t even around, nor are the people most responsible for me having PTSD in the first place, yet I still fear. It’s hard to explain why.

When things are high stress within my home, I get jumpy in ways that seem strange. My mind has already decided, based on years of living in a situation where this was often the case, that everything is going to fall apart if I do not keep every ball perfectly in the air. Violence, verbal or physical or both, is going to rain down at any moment and it will be all my fault. Is it something that I could even control? Doesn’t matter. It’d be my fault.

So you can imagine that things are a little stressful right now. They aren’t bad per se, they are just hard. We’ve added the equivalent of a new child to our home. This requires an intense adjust in routine as well every one of us adjusting to what every other person/dog around us needs. It’s different and when J is in school our routine is working great thus far. We have one more component to add, and then we’ll be good for a regular school year routine for a while… Probably in time for vacation, of course.

The moment I start to try to add in other things most people take for granted, I start to fall apart. I am failing. I am going to be in trouble, my mind screams. Everyone is going to be mad at me. I am going to be mocked, derided, and so on. Note however that the truth of this ever happening is unlikely to be true – Most if not all of my friends and family understand, but my brain has a very very hard time acknowledging that. When J screamed at his godmother and lost it in a restaurant tonight I thought I was going to fall to pieces right there. I could not see that it wasn’t my, or anyone’s, fault. It wasn’t his best day, and that happens… but my focus wasn’t strong enough to drag the thought train back onto the correct track. It was all I could do not to sink into a total panic attack.

We made it through dinner, but I am still shaken.

I am scared of the holiday season. I am scared of the pressure and expectations. Brooklyn will not be perfect, and she should not have to be yet. Her manners should be good, the training she has will fall into place over time to gel into exactly what we need in every regard from her. J-Bear will be J-Bear, relating to the world on his terms and that is right and good, but not always immediately understood or accepted by people we engage with. I will need down time to just breathe, but with deadlines for various get togethers and other things weighing heavy panic wants to take over and incapacitate me.

I am trying, but it is very, very hard right now. I have emergency “reset button” medication that helps calm me down so I sleep (exhaustion makes it SO much harder to cope!) but I try to take it as little as possible. When you come from a long line of addicts, it’s scary to take medication that could be badly addicting so I am as sparing with it as I can get away with.

I guess this is me asking for forgiveness and also offering apology. I don’t mean to fall apart, but I do, and I need room to breathe and to be okay in and of myself too. There’s nothing scarier to me than admitting that and opening myself up to potential cruel judgement but to not be truthful about it would be to go against everything I’ve written and the tone of this blog. This is my life, and part of life with J.

Trust, Fear and Forgiveness

This is entirely a Mama post here, so it’s very off topic. This blog is nearly all about J and I’s experiences but it’s also my go-to for talking things out in a way. Please bear with me. 

We’ve all done it in our lives, trusting the wrong person and realizing way too late that we’d done so. When you grow up in an abusive home, trust is something you kind of learn third hand. It’s not something that was taught as being innate. I did not grow up with a natural trust of my parents, or of situations, or of … well, much. Trust was learned as a process as though it were a foreign language. I understand it better now, but my understanding will always be imperfect so when someone comes along and commits what amounts to a vast crime against it it does feel as serious as a deep physical wound.

I have struggled with this. I still am struggling with this. This person added to their crimes against the trust given to them the use of “forgiveness” to equal “absolution”. They would constantly demand to be forgiven, believing firmly that forgiveness meant what they did was okay.

That’s not what forgiveness means. That’s never what forgiveness has meant. Forgiveness means acknowledging something happened and chosing to move on from it. It is not leave given by the person doling out the forgiveness for the person receiving it to repeat the same actions that required forgiveness in the first place.

That is abusing trust. That is abuse, to continue to make someone believe they must forgive you for your bad actions or they are a terrible person even though you just use their good nature as an excuse to keep repeating the same offenses or worse.

I let this person into my head so much that they had me believing I was a terrible person, that I was a monster, that I was abusive when I would stand my ground and demand to be treated with respect and dignity. The amount of times I was sworn at or torn into verbally over just plain sticking to my guns and not doing as I was demanded is absolutely ridiculous. It should have stopped after the first, but this is my sin. I was stupid. I wanted to trust; to believe in the goodness of someone it turns out never deserved it.

So here I am.

The ache is less, but I do not believe it will ever be completely gone. It will not hurt in the way that some other things do. My heart aches over the loss of my Nana and others, for example, in a very different manner. I am sad to know I cannot hug them again or hear their voice, yet I have the solace of knowing they’re still always there around me. This pain, from what this person did, is deeper and sadder. I cannot regain the years and energy lost to this person. I cannot go back and re-see that which I should have seen at the start and prevented so much pain with.

But I can move forward. I know the truth of who and what they are now and in knowing, I also know it is they who have to live with it. Not me, now. Not ever again me. I get the gift of continuing with my life knowing the truth and being able to heal from the wounds caused of years of hearing what a terrible person I was. I trusted this person with too much truth you see, and I am learning not to give that out again. They took me at my weakest points and sharpened them into fine blades by which to try to keep me down; to try to make me controllable.

If my own father couldn’t manage that, there was no way in hell this person was going to pull it off, especially not now with too much in the balance.

I’ve always been able to stand for others, to yell when they could not and to support them and help them through what they needed me for. I could never stand for myself, not with true strength and conviction. Then J came along.

Now I have to stand for myself and be true to what I need, what I want, and what will make our futures the best.

I think that scared this person. Independence always did.

I will never say whether I forgive this person or not. That’s a matter that belongs known to my heart and my heart alone until they might, on some unlikely day, learn what the word truly means. I will move on, as I have been, and I will love my son every day all the more for the strength that little boy has given me. I’ll close the door on this person once and for all and should they try to snake it open….

Well, opening things they weren’t welcome to didn’t work out well for Pandora, so I cannot imagine it will work out for them either.

Please forgive the lack of comment section. Not sure I am ready to open this one up for discussion. – N


Hold up, everyone. Going to get sappy here. This is written to my boy, who currently has a cold and a half. It all started with a thought that occurred as I was putting him to bed so bear with me.

Little man, you are the biggest challenge. There is nothing about our lives together that does not involve creative thinking or learning a new way of being it seems. Every day there’s a new challenge and every day, we just go about it like this is what normal people do. It’s our normal.

I’m grateful for that.

When parents await their first child or spend years waiting for that first child to come, however which way they do, they make all these plans and have all these visions. When I found out I was having you, I was so scared. I saw how my parents behaved. I saw how unwanted and unloved I had been. I had all these broken pieces of myself, some so jagged they will never not hurt. I had these wayposts of good things and these pieces of solid foundation laid by the good people who came through my life when I needed them.

What I didn’t know was that I needed you.

Well, let’s clarify: Some part of me knew it. It’s how I loved you long before I knew you. But I didn’t fully embrace that part, or didn’t fully understand it. It was just a lizard brained instinct that blossomed into oh so much more once I saw it for the truth it was.

You stormed into my life, full of chaos and cute, and you’ve remained marching to your own rhythm since the first moments of your life. You are the balm on my heart and the mortar that brought together all those pieces so carefully laid by the good people who I’ve known. You took my shattered soul and gave me purpose. All of a sudden, unconditional love made sense. I’d seen it, I’d been awed by it, but I’d never felt deserving of it.

And then there was you.

So on the days where you’re blowing snot all over the house and I am gagging because few things nauseate me more, this is what gets me through. On the days where I am tired, impatient, worn out, burnt out, whatever… This is why it’s only fleeting. I write this silly blog because one day I hope you read it and realize just where we started and where we’ve gone. I hope you will always see what you mean to me and what you’ve done for me.

Thank you for being my little sunshine boy.

And please please please stop snotting soon.

I love you.

Layers of Tired

Is there a such thing as being exhausted to death?

Cause if there is I feel three seconds from it.

I have no idea what’s going on. Is it the new routine? Is it seasonal? Is it illness? Is it something I am not guessing? Has J perfected siphoning away what little energy I have left?

I don’t know what the answer is but I do know that I sat down at around 9:30 this morning thinking I was going to just rest a second and didn’t move til almost 1:30pm. This is not necessarily good. I have stuff I need to be doing, places I need to be going and projects I need to be working on. My boy may go to school but that doesn’t mean mama gets to slack.

Yet slack I have. A lot.

I hope to have a great fundraising update very very soon but I have to wait til the end of the month for it. I am not avoiding anything, I think we have amazing news to share once we get it but I am not about to say anything final I get a complete confirmation from the Powers that Be.

Hope to have better posts soon.

Preschool and Mama’s Trust Issues

It’s an ungodly hour of night and here I am sitting at my blog. Smart, right? Especially given that his royal J-ness is usually up with the sun.

It happens. It’s no big deal.

It is less than a week now until the first day of regular preschool and the nerves have yet to truly set in. Honestly, I think I am in denial. Yes, he did go to summer school this summer. It felt a lot like camp. It was brief, it was a lot of fun to him it seemed, it was over before we knew it and now here we are. School, proper school with all the other kids, seems so… formal. Serious. Real.

He and I did games and painting today, spending a lot of our time playing and practicing words and generally puttering around as we do on days we (well, I) don’t feel like leaving the house. We tried dot painting on the easel and when that turned into a major excursion on the fail boat we changed to traditional painting. He made circles and smudged colors and generally made a mess.

It doesn’t matter though. He was happy. That was the goal.

Now, our days of doing these things will decrease dramatically. Sure, we can do our usual silly stuff on weekends or during afternoons but things are going to change, and change starkly. I know he is ready, even if he doesn’t quite know it yet, but am I?

He’s my baby, my one and only. My precious little guy who I have held the hand of through every little thing. I can guide him and support him on his journey through school but I cannot go through each day with him as I have through all else in his life thus far. I think that’s where I am hanging up. Strangers, who I hope will become partners with me in fostering the growth of J, will have charge of his days. I have to trust them with his care.

That’s the hang up. Thanks, blog slash psychologist!

Trust… It is something I do not do easily if I do it at all. Now, he who is most precious to me on this earth will be entrusted to people who are strangers to me. I have met one of them at least, and I feel she could be good for J, plus I know the therapists to be reasonably competent but none of that is trust. How do I know they are going to understand him? How do I know his needs are going to be met? How can I be sure that his determinedly independent way of being coupled with his general good nature is not going to leave him overlooked because he’s simply not always as demandingly loud as other children can be?

I am scared of him feeling hurt, frightened, lonely, overwhelmed, neglected… Any of these things.

I am also scared of shadows that don’t always exist. My brain is dark and full of terrors, much like the night George R. R. Martin describes in his “Song of Ice and Fire” books.

A part of me knows he will be alright. It’s just hard to let that part of me overrule the hyperventilating, worried for my boy, the sky is falling part of me all the time.

Hopefully he lets me take pictures next week. I didn’t remember to/get to do that during the summer session and look forward to trying when he goes to his first day.

Alright, shutting up and going to bed. Thanks, blog. You’re better than a therapist sometimes. Also, in that vein, does this count as talking to myself and, if so, am I just proving myself increasingly crazy? Only time will tell, internet. Only time will tell.

Stupid Depression

Another off topic one. I’m starting to wonder if I should just stop calling them that and figure if it happens anywhere on the planet, to anyone, it’s free game to be an on topic matter for the blog.


Depression is a bitter, rotten, awful and frustrating part of my life. It’s not major depression. Despite what some people in my life have believed, I am not even close to unhappy all of the time. I hit these funks, usually surrounding an episode with my PTSD, and they’re just dehabilitating. They feel mentally how my body felt physically post surgery.

It’s like one day you’re moving along, everything going as things go, nothing too bad or too great but everything seeming calm and peaceful. Then, in the blink of an eye, something happens that you may or may not be able to notice and boom, there’s this massive weight pinning you down. You can’t escape it, you’re bone tired all of the time, your experiences feel muted and dull… Everything seems sad and lonely and heartbreaking despite the fact most of it is likely anything but.

I hate it. I hate every minute of it.

But it’s not something one can flip a switch on. That has to be the single most frustrating thing, having people be like “cheer up” or “be more positive”… I can glue on all the smiles in the world and lie through my teeth feigning a perky demeanor all I want, it’s not changing what’s going on in my brain. It does, in fact, make it worse. It makes me feel even more broken, having to lie to the world and make everyone else see a falsehood as truth so they don’t get their feathers ruffled.

This sucks, but this is part of being me. This is part of who I am. It’s hard wired into my brain much like some pretty wild things are hard wired into my son. I can’t conveniently edit it out or hide it away because the rest of the world around me might feel awkward about it, I have to just live with it and ride it out when it happens. Sometimes, it’s a few days. Sometimes, it’s longer. Sometimes, it’s barely any time at all. Just as there can be little warning for when it will occur there can be just as little warning for when the weight lifts and the elusive sense of “normal” returns.

Meanwhile, life must and does still go on. Tomorrow, I take J to get his cast removed hopefully. Next week, he begins his first school year. The 14th of September is our Charity Yard Sale. There’s a lot going on and whether or not my body and mind can keep up I have to keep trucking onwards. It’s just a lot harder some days than it is others.


Just a note to those who read and who know me out in the real world: I am okay, I promise. As Shrek says, stuff is “better out than in” sometimes and this blog is my cheap therapy. I am always touched by the care and concern you show me but never want  you to worry. 🙂

Bloating Away

I’m too uncomfortable to sleep so here I am, chatting at the internets.

Life is a lot easier right now, despite post surgical insanity. This morning the horrible heatwave of 2013 ended and it was as though the world heaved a sigh of relief. I said elsewhere that my body has felt like a clenched fist holding broken glass since Monday of last week. Now, finally, it’s as though everything can start to relax even if I feel so full of air everywhere that I might pop or blow away.

Moving about is improving. It’s not great and I am getting back pain like I did post c-section as my back overcompensates for my weakened abdomen but it’s not nearly as bad. It’ll continue to improve. I only take the narcotics I was given at night because while they work alright, I hate them.

Am I the only person in the world who hates narcotics? I refused them for weeks and weeks and only gave in last week after so long of discomfort, pain and just plain not resting. Then, of course, post surgery I really needed the strong stuff. Dilaudid was no freakin’ joke. That stuff knocked me right down but allowed me the ability to get precious sleep. Thank God too, cause I had the worst of roommates.

Another tale for another time, maybe.

J is still struggling with all that is going on. I know he gets more than he might initially let on. I see it in his decision making but he is, after all, a 3 year old boy. He wants to rough and tumble! He wants to crash into me! He wants me to pick him up for cuddles and hugs whenever he wishes it! So this is still an area of sorrow to me. It’s silly, I know. Soon enough I’ll be smothering him with hugs and throwing him around as I used to but so much of his communication in terms of affection, care and just play is physical that when that absense is forced, it leaves a dreadful hole in our interactions. I improvise when I can but overall, patience is going to have to prevail on this count.

I need to regain my momentum with fundraising. I have great ideas for things to do from great people and cannot wait to sit down and explore the options and start putting things into play. Having my strength and health back is absolutely key to this effort and it too is going to demand patience I don’t know if I have. I am a nervous person terrified of failure. I cannot fail at this, not for J, not in a million years. 

So. Soon, I hope, big things will start to come together. Disappointed in some people I’ve reached out to who initially seemed on board but who have since faded out. Life must have gotten in the way but I cannot help but feel a little sad for it. 

I just have to have faith, right?


It might be the vicodin but I cannot find the spellcheck on WordPress right now so forgive me if this entry reads in gibberish. I’ll fix it in the morning.


.. And for once it has nothing to do with IEPs, public schools or autism care.

On 6/20 I went to the ER and spent a night in the hospital because there was a distinct worry that I had blown my heart out or something given the intense pain and pressure in my chest. The discomfort was crazy and I spent the night getting bloodwork, a nuclear medicine test to determine my lungs were free of embollism and finally a stress test come morning. My heart and lungs passed with flying colors. I was discharged with a curt “follow up with your primary care doctor and take some antacids”.


The discomfort has never left and I have felt blown off repeatedly. The GI doc sent me for an ultrasound just to rule out problems in my abdomen.

She never got back to me to inform me I had gallstones. In fact, I didn’t learn about them til my trip to the ER last night because I felt like I was unable to breathe all over again from the unending pain and pressure.

So now I have a gallbladder full of stones I am sure the surgeon will pat me on the head and send me on my way over.

So tired of doctors.

If I go quiet for a while, it’s cause I am that fed up with the medical profession and took out my own gallbladder.

Having a Sad

Hey, internet: I’m having a sad right now. Hear me out?

I’ve mentioned before that I live with Post Traumatic Stress Disorder. It is an intense, complex thing to live with and it is something that may always be a spectre hovering over my life. I am not secretive about having it but I am selective on letting out the details as to why I have it.

This leads to today’s post.

At least three times at various medical points of care in the past month I have been asked why I have PTSD. There has never been context to this beyond exploring my medical history. It’s never been couched as a concern to make sure that my medical care did not cause a triggering event to it, it’s just been bluntly thrown at me and shaken me badly enough that I am sitting here writing this on the fly before I go pick up little boy.

This isn’t cool, people. You wouldn’t ask someone with depression or whatnot why they have depression or what have you. You see it on the page, you acknowledge it, you move on right? So why is it okay to ask someone with PTSD why they have it? Isn’t that in and of itself inviting a reopening of traumas?

I have enough struggle dealing with professionals in these capacities as it is. Let’s not make it any harder than it need be, okay world? Please? Thanks.

A Secret…

…that I must confess.

Last week, I spent a night in the hospital. (cue the dramatic music!)

The most dramatic part of it was honestly the odyssey of them trying to get an IV in me that was large enough to handle the contrast needed to give me a CT to check my lungs for an embollism. Many tried. My arms are butchered. All failed and I had a nuclear medicine test instead that means I was festively radioactive of something for a few days.

All tests? Clear. My heart and lungs are behaving admirably but I still have sometimes very intense chest pains and shortness of breath. 

I think I’m possessed by a demon. That sounds logical, right? Totally sane. 

Only it’s more likely I have something as “dumb” as a hiatal hernia courtesy of carrying a 9lbs 2oz and 6ft long monster of a baby three years ago. Now, my son is beautiful and delightful. He was the bestest newborn ever (no bias, right?) and wonderfully well cooked… but he was practically up my nose as I carried him. I could feel his feet well up into my rib cage. I could feel my stomach being knocked around during his delivery. I would not be surprised to discover this all to be the source of my intense discomfort.

Or the aforementioned demon. Or some other House-worthy diagnosis.

So while I’m trying to be full boogie tilt on fundraising, I’m back and forth with low energy and frustrating pain. I have an appointment tomorrow that I hope will yield answers but until then I am sticking with calling this a case of gestating a baby with massive feet messing up my insides forever.

That’s something for the “what to expect” books: Semi-permanent to permanent remodelling of your innards may occur. Be warned.

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