GRATITUDE and GRACE

You know, for a few years now, I’ve lived a life where Ankylosing spondylitis is only my disease. And that of my ten year old, to be fair. She asks how an appointment went, she tells me to rest. But she’s not an adult. And sometimes, I yearn for that adult concern. And it has come in abundance- as I’ve shared in the recent past!

I don’t deserve the thoughtfulness in the questions I’m asked. It’s grace that brings me love from God in human form, so, I shall respond with gratitude. As you can see above, nothing heals properly. I still have the mark from what I assume was being scalded by my hot water bottle. But also, the swelling where they prised the lipoma from inside me is still present. Something the nurses don’t like.

Speaking of nurses, we finally removed sll the stitches yesterday. She didn’t like ‘how’ my wound has healed. It’s not normal. And because the skin is still not fully aligned, she put steri strips on to force the edges together and a dressing to cover them. She is confident that after Wednesday everything will finally be ok. But if it opens up again, I can go right back to them. PLEASE NO! I keep thinking the swelling is the cause of the extra pressure on the incision too. I will give it a month or two, and if still present, ask the doctor if that’s normal.

BUT I am thankful for lovely nurses this time.

A friend asked today if I’m going to resume my Rinvoq. Man! I don’t think anyone in my house even knew I had stopped it for the sake of this surgery. That’s how alone it is here. But, I’m grateful that my phone has linked me with people who do remember that I had to stop taking it way before my operation and wasn’t well enough to continue. I am grateful for that amount of thought. Thankful for all sisters.

I am thankful that my friend was skeptical about resuming Rinvoq at the time the new nurse at the rheumatologist’s office had said, one week after, as the complications prove that would have been a worse disaster so she agreed with me to keep myself off for as long as I believe. I’m thankful for someone who puts their head together with me and thinks with me, a team mate, a partner.

I am thankful for people who love children as much as I do. People who worry about them so much that it’s all they can pray about. People with a passion for children who aren’t theirs by blood, are my kind of people. Being able to chat about that aspect of life makes me happy. I love children and anything that happens in our circles that impacts children negatively, impacts us. And I love that. It’s heartwarming to have people who look outside themselves.

I am thankful, so thankful for childish enthusiasm. As you might know, we are waiting to have our daughter assessed for conduct disorder or impulse or mood disorder. She has bad moments and anger and LIES. She acts out anger based on lies and that is scary. She’s also very sensitive to any correction and retaliates with how much whoever is correcting her clearly hates her. Last night, she was pushing her brother. I told her it’s not good to push. She yelled out about how everybody hates her, even mommy and nobody wants to listen. Instead of coming to three of us older people, she was pushing him so she could brush her teeth alone in front of the mirror.

But there’s childish enthusiasm and humility. They found an old large puzzle and put it together. They (the two girls) came buzzing with excitement to tell me and call me to see. Meanwhile I’m trying to rest my calf so I don’t pull wounds open but how could I say no? As we walked to go see, they explained that there were missing pieces that they couldn’t find.

Besides the hilarity and awe of hearing about Siberian chipmunks for the first time ever, I love how Ammy, my ten year old, made sure to tell me that if it had not been for her little sister, she’d have never been able to finish the puzzle. She emphasised how lost and confused she was. But, little sister saved the day. That level of humility is what too many are lacking.

And it will be our downfall.

I’m grateful for someone who thinks of checking in, for asking how treatment is going. As for my leg up there in the photo? Still painful and swollen today as it was yesterday when I saw the nurses. Let’s see where the journey leads. Thankfully, I have people to watch my step and cheer me on.