Long Live Mom, Viva!

(For context about my principles and faith, and what my husband and I used to believe together, picture the most conservative Muslim couple you can. Do they show their arms, legs? Do they were tight clothes? Do their children do swimming or wearing typical western gym wear? Do they admire gymnasts or ballerinas or go watch them? Do they hug members of the opposite sex? That is who we were. That is who I still am.)

My friend has observed a few things. My ten year old daughter, Amarissa, has observed a few things. This very evening she asked me in front of her dad about those different principles she’s noticed in her dad that made her ask if I’m more Christian than he is.

See, years ago, he used to teach that racing, running against other people, etc aren’t necessary. (As taught by our founder. Probably the same principle as the Jehovah’s Witnesses’ no ‘competitive sports’ rule.) His whole theme was that in the God game, there are many victors and nobody feels anyone is superior in strength, power, ability etc. And as my oldest said last year, “What I remember so clearly, is dad asking the church if they could ever imagine Jesus in His long robes taking part in a running race, or in a soccer game.” Paul also taught against vainglory, emulation but rather about being helpful and viewing each other as on the same team.

As a lover of our founder’s writings, I still live by those principles. Unlike my husband, I don’t hug members of the opposite sex. In terms of earthly relationship, I put our family first. He puts his mother and siblings first. (I left and cleaved) And so, with all the things she has noticed, my girl asked in front of her dad, if I would join him in a race if I was well. I told her, “ No WAY!!” I have better (nobler) things I could be doing. Things that are still exercise but not in a competitive spirit and more importantly not surrounded by males who are immodest. If you believe it’s wrong, you’re not going to choose to be in a sea of it.

She then asked if I agree with her dad for running the races. Again, I said no. She then asked how we (She and I!) will stop him. Her first suggestion was to “take his money” so he can’t pay the entrance fees for these marathons. He then asked if she’d seen him pay anything this year. I told her his foot was sore so that’s why he hadn’t done a race this year.

A friend had remarked on this discrepancy amongst other issues that are different from what used to be taught by him, (Which are sadly, the things that drew me to him as a godly man of our faith) and she said she hopes I don’t die else our faith would die with me. I had to hope along with her.

See those fluffy pyjamas in the photo? Pathological Demand Avoidance (PDA) is extreme anxiety that sees the person needing to exert some bit of control over their life so they don’t lose their mind completely. The first and major thing you’re taught as the caregiver or partner of one with PDA is to give them choice. Make them feel as if they are making the decision.

Instead of my saying, “Nalo, here are the pyjamas you must wear” while her ADHD brain and body dawdled with getting undressed to bath, I asked her if she wanted any specific pyjama. She grandly told me as if conferring a hrest privilege upon me, “YOU can choose any. It’s ok. YOU can decide.”🤣

No crisis. No being made to feel powerless and even more out of control. No anger. No sadness. No telling them what to do. Letting them choose. Letting them ask for help if they want it. And giving freedom for things that aren’t important. Like them rearranging their bedroom without asking.😆

But dad doesn’t get it. Maybe he doesn’t know how to speak and ask. It’s not like I myself ever feel any tenderness in speech so maybe it’s just not possible for him. And children are fragile. So to have dad come out the room and he’s immediately barking instructions while the children are busy with something else, “ Go tidy up your room. Now! Go!” does NOT work even for adults. We want love. We want to be seen and valued. We want to know that you care how we are instead of the first greeting being, “Go tidy up.” Now especially as children, and children with ADHD nogal, is there a need for understanding why the room is in a mess, for checking what they are currently busy with, and suggesting that in X minutes, the floor being made tidy… Then the bed… Like that. They need directions one at a time because it’s overwhelming to get there and have a mountain of work. And because you have executive functioning disabilities (planning, coordinating, decision making…), you truly have no idea where to start so your brain freezes or panics and gets overwhelmed and your body does nothing.

And tone, for PDAers is everything. It’s the difference between peace and a huge meltdown and feeling like you’re hated.

And so, I don’t want to die. My friend doesn’t want me to die. And my children don’t want me to die. But I didn’t realise this was a FEAR of theirs till today.

Amarissa has harbored a fear all this time, that I’m hiding my impending death from them. 💔🥹She asked today if I’m sure the doctor didn’t tell me I’m dying and I just haven’t told them. This was after the three of them thanked me for their breakfast and then as I hugged them, she said it. “Are you sure you’re not hiding that you’re dying? What did the doctor really say? Please don’t die.”

I told her that according to my tests, I’m not dying. (Kidney function only went down by two units. Still waiting for test results on the pus she swabbed that was still coming out the abscess. Rheumatologist is scared the GP’s antibiotics might not be treating the right pathogen and it could be some other bad one so she dug inside and took some pus to send for testing) I told her I must still use my inhaler and she knows I am, so my lungs are not any worse. So no, I have no knowledge that I’m so sick that I’ll die any time soon.

So now I have a few more mom reasons besides being the only one who knows their school status and vision therapists and OT and exercises. To help keep the children seeing in living example what I read and study with them, to be their safe space, to understand their varied conditions and the best way of making them comfortable in a world not designed for children like them.

Abscess pain still there. Still no Rinvoq till I’m done with my course of antibiotics so the nights, pain, stiffness are getting even worse. I woke with my neck and head so sore I could barely see from when I woke up permanently, till maybe two hours later. (Don’t ask me how they are linked) But I can still love.

But hey, I have an ally! Our helper told our girl that she should go with her to Malawi when she goes to see her children so that I can rest. As you can tell from the video below, she’s the chief instigator of all the mayhem. So, not only physical rest from her wet bedding, school work, finding urine deposited in random places, (It’s a thing. Many of us moms in the ADHD group lament but have no real solution) but mental rest too. She came in at school time, “Mommy? Can you believe what Aunty Violet said? She said she will take me to Malawi so you can rest! And then when I’m naughty, she will send me to a FARM!! No way!!”🤣

Ahh the joys! It honestly is HARD. The number of anonymous parents sharing their despair in the groups and it’s over the exact same things I live my life despairing over is heartbreaking but so helpful. We’re all at see. If we were to tell what happens every ten minutes, people would accuse us of what a certain mom was told when she dared to TELL THE TRUTH about her ADHD son.

“You complain so much. You clearly don’t love your son.”

It’s such a prevalent response that even if I had anyone who asked how my parenting day was, I’d never tell them the lows and lows. You see it on disclaimers tired parents give (And don’t forget our non- speaker who is absolutely miserable today and I have no idea why. We’ve done all we can. Taken her on multiple drives, given pain meds, given extra to eat, let her watch jumping dolphins. She attacked me earlier for not discernible reason. Those too are things we don’t bother sharing because only those who live it even think of it as a possible part of your day, and because it’s again … Who wants be reminded that life can have the joy sucked out of it in different ways every half hour? Like my daughter’s eye lid cyst which is NOT gone despite surgery? It is on and on. Your heart resides in your children and when they are miserable, so are you.)

I digressed! I see it so often with mothers and caring, hands on fathers, “We love our son to death, but we are tired. He doesn’t listen to anything we tell him. It’s just fight after fight and my wife and I were left in tears last night.” 💔

What a life. And I’m meant to outlive the very ones who do bring joy, yes, but oh, so much heartache. So much money gone. So much time. And so much thought. I only had ‘breakfast’ at 15:00 today and that was meal one of the four I’m meant to have before each two capsules of antibiotics.

We have to live long.

But nobody takes care of us so we can care for our children in a healthier physical state so we can be strong when they are weak. (The irony of that sentence with an AS diagnosis.)

All of us are survivors or surviving. Long life to us and here’s to a hope of better.