Moments

You have to feel the sad moments, mourn them, then happily (or at least contentedly) move on. But it’s very difficult when you carry guilt in your heart.

It’s going into winter which means, colder nights and mornings. Not good for chronically ill lungs which get narrowed by cold air. I’m already on an inhaler given me in March by my rheumatologist after she listened to my lungs. (Hey, the positive news is that Medical aid will pay for my inhalers and two chest x-rays and a chest CT scan until the year 9999!)

But you can’t repair lung damage and mine is getting worse. From the normal winter dry cough that used to prompt an old doctor friend to tell me to get it sorted out ASAP to today’s bad sounding cough-the one that shocked and worried a GP… Yesterday I felt guilt over THAT. (I’ve already posted about AS guilt and I have more. Amarissa’s educational psychologist said that during her emotional assessment, my girl expressed worry about my Ankylosing spondylitis. NOT GOOD.) I’m used to the new sound. Deep and like you’re sick, triggered by movement that makes you breathe faster. I coughed and continued with the laundry because it’s normal to me, but my five year Nalo, echoed by her nine year old brother, Micaiah stopped their conversation and their chatter with each other and our half day driver and asked, “Are you ok, Mommy?” I felt so so bad. I told them it’s ok, it’s me, nothing new. Then I coughed again that deep cough a few moments, and Nalo said, “I’m sorry, Mommy.” Amarissa also said something in between but I couldn’t hear her clearly. But what I do know is that I ‘made’ all three children worry.

Not good.

Then in the evening, they went with their dad to the pharmacy to choose sugar-free sweets for their weekly treat using their pocket money. (They don’t have bank accounts. We just tell them they have money and then forget to count how much they’ve used up!😆) This time, Micaiah felt sad. He said, “I’m sad.” Yep, he was. Don’t tell me autistics don’t have feelings. Another lie! Many do! They just might not excited out the way you expect.

Some boy has told his mother, “I don’t want to be like that boy.” While looking at him. We have discussed (on here) the genetic syndrome that might be the cause of the low set and back facing ear lobes (and other invisible unless he’s naked signs) so perhaps the child noticed them? I don’t know. All I know is that my son was VERY hurt and his sisters were hurting with him. I wish I could protect my children from the world!!

I told them that perhaps the mother had been telling the boy to stop nagging for things and be quiet and calm like Micaiah. I REALLY implied that was the most feasible reason. 😅It indeed could have been. I’ve heard mothers tell their children to stop it and be like X… It helped soothe his pain that he had felt for over 20 minutes.💔He still wasn’t ok 20 minutes later which is when I concocted this possible reason.

We have no clue why the boy said it. We know how it impacted my boy. I wish I could scoop him up and keep him safe from all harm-physical and mental.

I’m going to do a short and boring video on YT on rejection sensitive dysphoria which I’m very sure Amarissa has. I just wish their brains allowed them to feel happy all the time. To not feel what they shouldn’t be feeling. (Even neutral comments or silence makes those with RSD feel negative about themselves.)

I wish they’d go through life feeling like how they feel in the videos below. I wish I could protect them from all worry and anguish. My non-speaker has been having a terrible time this week and we can’t tell why. Lots of screaming and crying, prolonged and saddening and tiring for me too. I wish I could magically make her able to express why she’s so miserable and then be able to fix it. Thursday she again did her “I’m going to break your neck. How dare you get down on your knees and try comfort me with deep pressure?” This after she’d already pushed me, pulled my hair so my neck snapped back, and tried to pick me up (to hurl me down?). Our helper is worried about how she will be when she is much taller at age ten because she’s already so tall now. This week is Had been mentally, emotionally and physically awful. Side effects of Bree treatment attempt included. I myself need more of the moments below!