“I see you laughing and smiling…”

This has been a way too hard on this body week. Not only am I still teaching even though I’m not supposed to be, but our non speaking angel was extremely absorbed in making me work my broken body.

She’s crushing me here. Lying with her substantial amount of weight on my lap. Add all the sitting I’ve had to do as I drive to various appointments, sit for various appointments, and still have to do today as we once again try to get my now 11 year old Amarissa assessed, and I’ve struggled with pain.

Also, it’s the mental strain. It is constant and ongoing. I get no rest. My children can’t just live a normal life and play typically. Normal is boring for them. They can’t play together or read for longer than 5 minutes before they either need a referee or they come wanting something from me. Always wanting something exciting aka expensive to eat or play with. And when you are in pain, you just want to be left alone to rest. With our unpredictable and violent and ‘screamy’ non speaker, I live on high alert

Alright. Now let’s move onto the afternoon of today. This post has been in the pipe works since Wednesday!

AS and sitting are not friends. I’ve taken the children for their annual weigh ins and medication reviews. We’ve added new ones here and there and sitting in the room was bad. The eyes, the mouth and throat theat become parched sooo quickly. I’d forgotten to carry water. But I also had moments of levity.

The paediatrician told Ms Talkative Twin, “Ok, Naynay, I’m going to put this here on your chest, ok?”

She replied, “Yes! If you don’t use a stethoscope then you won’t be able to hear my heart!”

😂😂😂 Busy telling her he’s using “this” when she knows full well it’s a stethoscope. He took them out his ears and said, “WHAT!?? Say that again!!”😂

While we are on the subject of Little Miss. One of her reading words for school was “globe.” She then asked for one. Could I say no when it’s educational?

She’s holding magnifying glass to it so she can read the words. That thing went everywhere with her.

Time to eat? Yep, it’s coming to join her.

Time to sleep? It’s going to bed in her room.

Globes are conversation starters…

Globes make us proud of how well our little sister reads…Globes are the world!🥰😉

And then we go back to our gripe. The pain. The sitting and the talking. I want time alone. In peace. No talking. Sitting. Just peace and quiet. I can’t wait for tomorrow where hopefully I will get it for 20 minutes or so. I can’t wait to just be. But before we talk about just being, we go to the sitting.

Today, I went to the introductory appointment for Ammy’s autism with PDA assessment. It was hell. Stupid mouth and throat drying up, pain and no escape. Bone marrow edema (swollen bone marrow) is really painful to sit on. Who knew that putting pressure on bones that have internal contents putting outward pressure on them would cause excruciating pain? And then she said she believes Ammy has PMDD. I’m embarrassed to say I had no clue what that was. But it describes my poor girl perfectly.

This is our girl to a tee. No wonder she was begging for someone to stop her cycle from happening. Though I too was begging internally. My poor girl cannot focus for school at all. It’s like she’s drunk. She sees words to at aren’t there, can’t recall what she has just read. It’s a waste of time as she is completely blank. And the rest of the symptoms speak for themselves. She’s the overrated type. And oh my, the conflict spreads everywhere and is poisonous.

And yes, we are right there in that phase right now.

As the psychologist who will be doing the assessment asked for background, all the other children’s challenges and behaviours, my homeschooling, she commented, “I see you laughing and smiling and speaking with such grace and poise, but there is no way this isn’t heavy. Special needs children are a terrible strain. You must be feeling it, aren’t you? Are you masking?”

I looked at her and thought, “And you don’t even know that I’m worried about my failing lungs, painful body as we sit here and you see me shifting around…Just parenting these children is heavy. Add parenting when you yourself need a parent to nurture you, and I’m only one step away from a mental breakdown. I cannot do this much longer. I need serious help and a break. A proper rest. Time to just be by myself. To read for myself, not for curricula and special needs. To rest my brain.” I never thought of it as masking. Masking was for autistics and ADHDers who pretend everything is ok but inside they are barely holding on. Am I masking?🤔

I can completely understand why overwhelmed parents just choose to leave this world with their children. This world isn’t made for us. It’s isolating and lonely. Depressing and tiring. Nerve racking and heartbreaking. The funny moments don’t erase the daily and nightly grind. It’s hell. I believe God will understand those parents who couldn’t live with this any longer. I will never join them, but He knows the pit of anxiety they live with every moment. And so yes, I was laughing and smiling but it’s not funny. I just have no choice.”

She has PDA herself and sees herself in the things Ammy does. So who knows? We might finally be on the way to a diagnosis that will help us help her better. And..I will need to sit through a minimum for four more hours long sessions. I am distraught. I have suffered so much this week. To know I’m far from going back to ‘normal’ pain is horrible. But a mom’s got to do what a mom’s got to do!

I have to. For these very needy angels who expect me to fill their every spare moment with new toys, new treats to eat, glue that’s running out fast, sellotape, markers Ammy leaves to dry out as she doesn’t out the lids back on.

If I could clone myself, I’d go out myself in a psych hospital and rest my mind and hospital. But I can’t. So I will end with this.

On Sunday, my ten year old son gave me a gift. He’d told me he was making me a gift when he came to ask me for sellotape and a box. Inside was a letter I could actually make sense of! In October last year, even he didn’t know what he’d written in a card to his sisters on their birthday. Here we are in February and my son’s note clearly said, “Dear mom. You are the best in the world. I love you.” Well, include the spelling errors he’d made🥰

He added this Woolworths brochure (seen above) from last year November and told me I should look at it and buy myself “anything” I see inside.😂🥰🤔

That was definitely a thought that counted, and then some! Don’t let anyone tell you autistics are selfish or self centered.

I’m in the ‘severely impaired’ level of my long diffusion capacity and my blood oxygen continues to drop. Both dropped at a much steeper rate than they had before and it terrifies me because I gave my best. I went in hoping for a stable, or even a “Your numbers are normal now!! Instead, they were so bad that they thought I needed more attempts to get re-used to the testing but all that did was cause pain in my dry throat and chest. A pain that took very long to dissipate.

We live in bad times. Diseases increase instead of decreasing. Challenges become harder instead of at least staying stable. And money rules the world. I found a perfect place for the three children to go do some movement activities or art but the prices were too high. I haven’t heard back from the homeschool mom who was offering free dance classes… Anything to use up their energy just a bit. In my absence. Let’s see what happens in the future! For now, I plead with God for a better and longer chance to just be me. To rest my bones and my throat and mouth. To bask in His love and have nothing interrupt that communion.

One day!

And yes, opthalmologist confirmed my ‘very dry eye’ and suggested plugs to put into my tear ducts that drain out so that the few years I make don’t drain out. And the rest was what I knew -drops, ointments and gels often throughout the day to avoid damage on top of the discomfort of dryness.