Tag: invisible diseases

I Know what I Want for THIS Mother’s Day(s)

Grace by any other name2 Comments

I want to do more! You know how it is. All the things you want to do and only remember when you’re busy with something else…

Like noticing how untidy the garage is when you’re busy hanging damp washing in it.

As every mother knows. Well, mothers who don’t have live in nannies, that is. As every mother knows, mothering is your calling and job. So when you have four little ones with autism, ADHD, intellectual impairment and nobody else to talk to and plan activities for them, you don’t have time to do those things that irritate you.

Add active AS, and you don’t really have the ability to fix those things that irritate you either.

So what I want is to go into remission. There are people in my Rinvoq (My newest treatment attempt) group who are in remission. That means no pain whatsoever and they’ve almost halted the disease completely. The CEO if the large retailer, Shoprite said in his book that he’s been in remission for 30 years!! And he knows that when the AS starts being active again, he can find other treatments. I can’t imagine having no pain for the next 30 years!! By then I’d be 75! Better now than never, right??

I want to stir food and not be in pain. I want to lift light shopping and not have my husband ask what’s wrong because I forgot he was there and so didn’t hide the grimace the pain in my shoulders put on my face.

So I tried to do one thing I wanted to do.

I put the kiddies to sleep first. The first one to go to bed is this non-speaking angel who threw a very tiny fit because I took her for a drive that was too short. (third drive of the day) I put their soy yoghurt, peanuts and raisins and peeled and separated tangerines on the table and RAN away so she would not pull me. She stopped her half hearted crying! And by the time I came back out to finish off medicating them, she was happy again.

This was sent to me last Friday when I was hiding from having to do the second drive of the day. (See a theme?) She did the arranging of the soft play therapy toys plus her now too small car seat on the treadmill ☺️☺️

I want to enjoy more of that. Her crazy creativity and moments of peace.

I got a lot of ‘crazy’ tonight. She was in her room laughing and laughing on her own! For 25 minutes straight, my girl laughed and laughed! Then she slept.

The next to go to sleep was her twin.

I set up her electric hot water bottle, turned on her walk heater, tucked her in and told her I loved her.

Two to go.

I forgot about their meds. I hope their dad medicated them. I got busy! But I did give my ten year old an activity book to do before lights off. Then I went…

And I’m now lying here putting my hot water bottle on my very sore shoulder and then putting it on my lower back. All because I did something else I’ve been wanting to do.

I went to the garage, knowing I’d already done grocery shopping and breakfast and lunch. And knowing I should therefore REST! But then, the washing was getting damp in the waning afternoon as dew fell on it so I had to drag my sore body out.

And then I saw it.

The thing I always want to sort out but only notice when I’m busy with something else.

The garage

I focused on this area with the box full of damp books. Damaged books. Damaged by the children. And broken toys and some that could be salvaged. I took all the moldy books and papers out to the fire pit outside. Threw away all broken prams, flat balls nobody uses, all of the stuff that irritates. Kept the dirty cups for sand play. Sorted the “stuff” out. Typical and normal night.

It was fun. Earbuds in so I could listen to music without having my son (Who always comes on the drives his sister asks for) asking me what this word means or asking what language I am listening to while I’m trying to sing along.

I want to be able to do this every day, and not suffer afterwards. Not to have to choose between putting my hot water bottle on my shoulder vs on my lower back. I want to be able to work and know that tomorrow, I will NOT be in worse pain.

I want to be able to use the extra energy Rinvoq has given me without fear of what using that energy means to my pain levels.

I want to be much better.

I want to be able to do all the movement activities I plan for the children but don’t get round to because teaching and doing vision exercises are too much as it is.

I want to be a mother in the way I used to be. I want my day as a mother to be as full or as empty as I choose for it to be. I want to stop doing something not because if I do more then I’ll be in worse pain for more days, but just because I feel like I’ve done enough.

For now, I’ll be thankful that I at least had ENERGY to get rid of everything in here and that was in front and around it.

But I want more.

Is that too much to ask?

But also, I want to be thankful that most nights since I started this ‘not so good for my heart’ treatment, I’ve slept better than I have in 40 years. Counting from when the bone pain the GP said was “just growing pain” started keeping me up at night.

I want to acknowledge that somewhere in this horrible world, there is beauty.

That would be prideful of me

Grace by any other nameLeave a comment

Around early 2019, a younger woman I met -in her 30’s-asked how I was. She’s one of those who means it when she asks, so I told her that I was in the middle of an IBS flare, and wasn’t in a good physical space due to other long standing issues. Which I now realize are due to AS, or are common co-occurrences-like the IBS itself.

Her response was along the lines of, “You sound like you’ve accepted that this is how your life will be. No! God doesn’t want you to be sick! He desires health for all of us. You must pray…”

That would be presumptuous of me. And prideful. The world is full of suffering of every kind. Bombs, tribal wars, earthquakes and awful diseases. Ever seen a little child suffering from EB? Does God “WANT” little children to be sick? Does He want people to have cancer? If those people, especially the innocent children, have to deal with suffering, why not me? Why would I not accept suffering when they have to too?

I’m not more important or less undeserving than they are. Good, bad, evil, perfect, selfish, selfless, nobody is going to be guaranteed a life free from trials. Why would I expect preferential treatment from God? The same God Who bears long with sinners so that they repent and go home to heaven one day, allows the world we are in to do its thing.

Only heaven will be like heaven. Only in heaven (and the new earth) will God’s will be done. By all of us. It’s not like I’m perfect, why would I expect a perfect life? Until then, His grace is as sufficient for me as it was for poor Paul who begged Him to remove the “thorn in his flesh” many times.

Paul prayed for healing. He didn’t want to be sick. But God had other plans. Anne so Paul’s prayers changed. I stopped praying in 2012. I remember it very well. We’d gone to the shop and my back was killing me. It wasn’t even a long trip. Or was only shopping for a family of four who all ate the same things -it was quick. But by the time I got into the car, I was in agony. I silently asked God why He hasn’t healed me. Why none of the physio helped. Why He wasn’t taking this cup away from me.

I wept and pleaded as never before. I told HimI wanted to be a more present wife and mother. I wanted to visit sick lonely patients in hospital. I couldn’t when I couldn’t even sit in a car or be upright without pain. But He didn’t heal me. I gave up. I didn’t deserve to receive what Paul, the great preacher didn’t get. I didn’t deserve what Christ Himself didn’t get. They didn’t have lives free from suffering, so why should I? I stopped pressing for healing, but have never stopped praying for strength, for grace to suffer without lashing out. For a sinless life. THOSE, I know for sure are His will for me on this plague-filled planet.