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…..
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.