Vent

Why is there this great pressure in parentville to only saint the joys of perfection and if you as a mom do say or ask a question about anything it’s almost grotestect to speak like that. Well I’ve have just about enough of that. Here’s how I feel.

I feel absolutely totally under the microscope, in the cross arrows, it’s mom always moms short comings. Like when in the bloody hell did this ritual begin? I’m over here growing black begs under my eyes similar to how tree fungus ripples over itself. I’m gonna go way out on a limb and shout it.. being a mother is seriously ducking intense!!! Hard!! I barely make decisions for myself and here I am raising two awesome people hoping I’m doing at least 40 percent allright, maybe?! Here I go selfish mom about to say something more than the obvious awesome amazing things children bring to the table.

Here I go… shame on me.

My daughter has been diagnosed with a genetic disorder called elhers-Danlos syndrome type 1. This is a chromosome syndrome and is greatly affecting her ability to walk and so much more. Her case is very rare and we are forming a great team of paediatricians family doctors and physiotherapy programs just for her. We don’t know how she will walk, how well and with what needed to help her, Cain, walker.. all these almost sick feelings come from my heart. My perfect happy two year old daughter is on her bum looking up at me. She’s crying in my arms pointing to go play with the others, she can’t. If she got bumped into her arms might dislocate. He’s so fragile. This syndrome affects all collagen be our ligaments and connective tissue that hold our limbs and parts in place within the joint for my baby girl her ligaments have no limits or elasticity she’s floating in her joints. Her life will always be physio weekly as she needs to use her muscles to hold her up where the tissues we is can’t. We have friction blisters on her bottom, leg cramps that leave her locked stiff in discomfort. I know this is not temporary, this will be her life struggle. I hate this. Fuck I hate this!!!!!

Aghhhhhhj!! She don’t deserve a life of pain. I’m learning how to be her physical coach that she will need everyday. Alee’s first precious steps is going to be a lot of work but by golly I’m there every little goal. I’m here baby girl. I’m so proud of her and her beautiful girly face. She’s so much more than I could have imagined.

My son, my bright warm loving burst of energy, my little man who makes everyone around him see things differently and changes us all by feeling so intensely for others seeking a good conclusion is his need. I holy old judge meter moment.. I stayed home with my son for 5 years, no babysitters, daycare programs, no family near just us. Another knot on the meter I im a co sleeping, do everything for my children mom. It’s ridiculous how I have to be there. I’m going to be the mother in pjs chasing them down in me flannels.. I can’t be that mom. My son has a extremely high amount of energy, unreal really. He goes at 300rpms all day. Never rude, grouchy or hard to be around just cannot sit still. It’s exhausting! Sorry but I’m so incredibly exhausted of cha singing this cute little Hellian around literally pulling him off ceilings. Phew!!! I’ve lugged his wild butt away from parties he just can’t focus and then here comes the big snapper… he’s bad. Ya that the looks, the opinionated glares. Well they are pretty yucky ladies. I mean you wanna try it please honestly help. My son can’t seem to learn no or not safe. This has been a big problem since day one, I know how judge my friends became over my need to be with him, no option. Well I would have loved someone to ask me why? Well it’s because I’ve known in my bones that my son is not safe. He’s not safe and the great lengths we go to in order to go anywhere is a we are learning now things other parents don’t do. My son is the kid who locked the food Ioff the table cause he couldn’t see it. He emptied eggnog onto the floor at a party, runs out doors, talks to strangers you name it the amount of worries we carry in high anxiety is keeping a hand on him, literally I hold his shirt.

I so did not need the dumpy diaper people who’s parental advice is no more than critics, oh my ducking Christ I here one more suggestion on how to fix my son I might go hungry zombie and chew that ignorant toy he off. My sons the bad kid label. So unfair. Everyone seems to be overwhelmed and as he says why does everyone feel mad at me. Mad at him, how sad. And it’s true even u find some days I’m mad. Overwhelmed, then mad of how many times I have to do and repeat myself. My patients is short. I know he could not be out of our sight safely so I felt no other option than staying home with him. Well happy to say my raw of sunshine was ready we felt to start a wee flap of his wings and start half day kindergarten. Boys he’s shaken the concrete out the old red bricks let me tell ya. I did not realize myself just how hands on and busy he really is until I saw his teachers sweating bugged eyes looking at me like is this all the time?

So those who gave some pretty bad suggestions like spankings and long lectures on how I was wish washy and unable to control my kid… you made me feel awful weak and alone cause the thought of hurting this amazingly innocent happy boy would be so wrong. Maybe just offer a kind of I feel you mom, it’s a nice connecting moment of ya were in this together. Fist bump!!

We know that our son has hyperactivity and I mean full throttle all the time that’s ok until now. As a parent I’m terrified. The teachers are having is and them together have psychological testing.. first thought I’m fucking up. As the meeting goes along we started to listen rather than shot down any ideas, how’s than gonna be the best for him. Listening I’m not there yet as this is happening. We are all feeling it but dare not whisper is word, Autism. Autism. Oh my god…..

Autism.

We feel and will all confirm of course before even saying anything to anyone. Asbergers is how it’s leaning. He’s way too smart, quirks, energy, unable to learn no and have no sense of danger. Irregulation of himself, repetition the rituals and massive emotional reactions when not completed his task. Once again I’m feeling like a douche bag mother talking about them and their future needs. It’s not his fault!!! He really don’t deserve people to always be annoyed with him. He is so emotionally sensitive can feel a birds hungry, bunnys lonely it’s his big gentle heart and I will not beat his beauty out. He’s the greatest, funniest most vibrant human most have seen.

I’m so flippin proud of that boy, my fave is in constant smile just thinking of him. My daughters love for me, that look in her eyes of how I’m so much to her in such a different way, each of these cool humans know even when I’m frustrated, sad, struggling or gone away for a bit none.. none of the big feeling are because of you. My perfect best of me creations your my reason for everyday

Love these shits

I’m just not so certain I’m the mother for this job as I’m not able to do so much.

My truest friend

I have this amazing human in my life, a real friendship from the most unique of scenarios. We moved to a suburb outside of the big city 4 years ago now so we could gain more space with a baby our super cute downtown bachelor apartment was busting full. That amazing apartment had no rooms just a open concept and I loved it! Right in the core of the city, tram train outside my door, we never stopped going out and about it’s was outbreak from responsibility that we had too much of too young. We found this old old I mean Vikings old cottage near the lake, about a ten minute walk. The old shack has only wood heat, plywood cupboards made on 1935 little water ripple effect above the sink, so classic. The cottage nearly froze us the first winter like living in a basket with pet rats and all, ya. We declared bankruptcy and had the bail bonds man reposes our nice royal blue 300. We needed a place to call home and renting a house in the city doubles so suburbs we went. We certainly knew poverty at that very humbling time. Sad at first but this old shack has the greatest memories within its old newspaper packed walls.

A few weeks after moving in a little old man in a super tiny old trailer parked his home at the front of the property. We heard many tales of this super sweet kind old man who was returning to his home soon. Handy Andy was his name he runes that by 30 years here shovelling, painting, lugging bricks and clearing job sites all across the city. He came up the driveway with his distinct sideways twitchy walk, hump on his back this tiny man. Hand out hello and such a warm weathered face. Beyond the burnt dried out scared skin these blue eyes that almost glow like little flashlights hidden by his squint. Instantly friends. A bit weary of a man living in a trailer, no electricity, water, toilet just a tin roof over his mattress. The proudest he was of his home, something never good enough for anyone else was his palace. As we know know Andy was a severe alcoholic that had him living on the streets or a shelter on a good night. Usually he woke up in the drunk tank. 8 years ago after another near death overdose Andy sought help at the shelters missionary church. For him he found worth, gave up the bottle and decided to try a new way to walk. Shorty after he saved up enough cash from his labours to by a rusted out broken trailer. He worked cleaning up a job site near by so they knew him, his story and let him park his new and first home on the lot. A friendship that came is way more than I could imagine.

Every day I saw his wrinkled happy face coming and going, working in my garden this became normal. We began to chat and before long that little beat up old man was my friend. By friend I mean the most honest, open unfiltered friendship I’ve had. Now 4 years later Andy is family nothing less. He’s done so very much for me by just being kind and incredibly thoughtful. I love him. If a few days go by without talking I’m calling him to make sure he’s ok. His sobriety is nothing more than amazing strength. Later on we discovered he was actually freezing up there, snow covered wind blowing in Snow crystals sleeping under a pile of blankets nearly a dozen. In 30 below storms he’d ride his bike I. The wind and rain to work sleeping frozen all night then off to work. He’s completely independent but now we are so close.

I have so so many handy Andy stories to share.

My bestest truest friend

Scared

I live a very open life.  I came forward 3 years ago now and let people see all of me.  Im not shamed of my biggest secret anymore, it’s an amazing feeling just saying fuck it!  Im worth it.  Im overwhelmed at times by how many people I now have honest open real friendships with, living from afar took a few steps forward it empowering to not be your own victim.  Even though I keep my journey & recovery open I still keep a few of my struggles silent only because I’m learning too and new symptoms come old ones visit it’s just my cross to bare.  I live in constant fear.  Im scared all the time.  I am really having a hard time going out into the world.  Im scared in a white misty cloud every time I go out.  I feel volnerable out there, it’s just scary.   The light hurts my eyes, the noises around me clatter I can’t focus on a dot to maintain balance.  I feel people.  I feel a bad person in a mall full of people I will see you.  My eyes are scanning every single detail, I’m photographing with my mind… snap, snap snap.  With all these sensitivities going on trying to complete simple tasks like groceries has become something I just can’t do right now.  My husband does all the outings and online ordering has been enabling for me and if I do choose to go and force myself to be around others I’m so scared I feel weak.  This is hard!  It’s obvious I’m off and meeting new people!!!  I don’t trust or do this easily but now and then a friend pops out of the clatter.  That’s amazing.

im such a social person yet lately I’m feeling lost and alone.

All this started 6 years ago when I got pregnant and had to have so many apts weekly as I was really high risk.  This protected need to keep that baby safe was so raw and it didn’t feel safe in the world.  It’s not.  As I lost independence at that time I slowly put on my shackles of irrational phobias.  I can control my anxiety and paranoia so much better in my home.  It’s safe.  Until you felt volnerability you don’t understand that fear.  Awful feeling.  Deep in your gut, everything is a possible worst case scenario.  Irational!  I know it yet I’m scared.  Mind over matter at times fades. Then grows the phobia.

After my son my symptoms increased as my physical health declined I lost more and more of independence a little at a time.  I stopped driving my medications are too risky as I have paused and delays.  I loved to drive, I miss that independence.  Then i realized I’ll not be able to financially contribute the surgeries, the apts, the symptoms the pregnancies of uncertain life, the medications the ups the downs the hormones the independence just got lost.  Now I feel a bit trapped.  Going to pick up my son at school was a worry an scary anticipation of going out and seeing people ate at me all day.  I can’t sleep the nights before having to go somewhere.  Just fret myself sick over it.

I feeling at this time my phobias of civilatijn around me and all it’s disgusting humans that walk amongst us have became too big to control on my own.  I have decided with my psychiatrist to start into more intense therapy before the fear becomes another box.

No one seems to accept that I just can’t.  I can’t.

I cant

i can barely understand this myself.  I want to more than anything to be in the world but it’s just not easy.

Forever from afar.