Year Ending

The year is ending and we have not found the magic bullet that will kill all the pain. We haven’t found the magical elixir that will reduce inflammation. Instead, my inflammation has reached heights it hadn’t reached even before treatment.

A S marches on.

But, so does life and so does love and so does joy and so does contentment with I hope, some godliness a lá Paul’s biblical statement that godliness with contentment is great gain.

Nothing amazing or miraculous has happened. On the contrary, autism plus intellectual impairment has made life harder. The older our non-speaker becomes, the harder it is for us. Take yesterday. I didn’t actually tell our consistent blog commenter what one reason was, when she texted that she hoped there had been fewer tantrums yesterday. Oh not a chance! The day before and yesterday were the worst of the week. One reason? I gave her a little toy car to play with that she loved. But then, she wanted to open it up and remove the cute little flowers that were inside.

No can do.

And she could not understand that I was saying I can’t. Any denial comes across as if I’m either being purposely obtuse, not wanting to grant her her wish, or slow. So? If she continues pushing it at me, and screaming, throwing herself around and pummeling me, eventually I will do what she wants.

We had another day. She wanted an app on the iPad. But she couldn’t wait for it to download. Chaos ensued as it always does when apps SHE pulls me to put on, take time. I was at fault and I needed to make the iPad hurry up.

That’s what we live with every single day. It’s not getting better. The older she gets, the more she finds that’s not according to plan.

My son, my nine year old, I was so excited I put on video, immortalized it. He had finally learnt how to rhyme. Alas, he has now forgotten. The same boy who would make up rhyming words without being asked to, randomly during the day, couldn’t even strict given rhyming words.

My ten year old? Her dyscalculia is also not improving.

I’m lying here and I’ve actually got absolutely nothing amazing to tell you. I’m single parenting it as much as ever, more than ever. I’ve gotten worse physically, but I’m parenting alone MORE. Doing much..on my own.

Somehow I have to link all this with the fact that love, joy and contentment continue on. I have no choice. God requires it. And they are real. I feel them. I’ve removed dead weight from my life-the people who bombard me with their woes and then add at the end, “I haven’t forgotten you, I’m thinking about you daily.” Yeah well, actions speak louder than empty words after text full of my needing to be a shoulder to lean on. I can’t. And it’s freeing. It allows me to give more to those who give themselves too. To let more of their lives join mine. To not cast my pearls before swine because that’s what you do when you open up to someone who’s merely waiting for you to finish so they can tell you their drama.

I’m enjoying asking, sharing, showing the hard parts. Showing that life isn’t the glamour it seemed to be when I was holding everything in and pretending I was loved and appreciated. It takes many years to see emotional abuse and neglect! But now, I’m living in the truth of the strong woman I am, the daughter beloved by a King she doesn’t deserve. Loved beyond measure. My earthly worth reflected in those who share with me their heartaches while asking me daily about mine.

It’s hard to be there for someone whose days are getting worse.

It’s hard to ask when you don’t know how you’ll answer.

It’s brave and loving to ask when you know the answer won’t be good news. It brings joy and contentment. It’s God on earth. It’s giving of oneself. It’s what brings extra smiles above those my own children bring me. It makes up for days in chairs waiting for IVs of high dose cortisone to work. It makes up for bending down and falling against my five year old (thankfully she was seated!) who innocently and so very funnily asked, “ Mommy!! What are you doing??”

And then didn’t bat an eyelid when I told her I was falling! I’ve quit Lyrica- the famous fibro, depression med my rheumatologist added. I was dizzy, losing my balance and losing my ability to speak. It was scary. I’ll pray the next Biologic we try in MARCH (probably starting in April or May?) will be THE one.

So, I keep going forward into another year with hope..again.

I think this blog expires in March. Maybe I’ll see you again. Just know I’m alive. I’m in pain. But I’m loved and I am loving. God bless us all as we look back..and look forward.

Signing off

The STILL Ankylosing Adventist