Finally!

The first opthalmologist I saw is a doddering old man who didn’t even know how to test my eyes for dryness and writes notes on a card as small as my hand. I didn’t think anything of it but the rheumatologist’s admin asked for a report. Which of course they’d not told me to get so I didn’t have one. I then made another appointment with the group that’s been-not very successfully treating my son- not successfully because there’s been no continuity in doctors on weekends and what the first doctor said he’d do is not what the second one did. And his eyes remain not great but they claim they know the reason why. So we wait and see what happens at his follow up appointment…

Back to this afternoon’s appointment. As soon as I mentioned dry mouth and throat and chest that hurts when I’m exercising or breathing in deeply, the female opthalmologist asked, “But why hasn’t your rheumatologist tested you for Sjögren’s? It might be negative and still be it, but it might be a positive test and then you’d know!?”

You tell me! It’s what I’d lamented to a friend earlier this week. They merely told me I don’t have lupus and then left it at that as if I’d even asked about lupus! In my reply, I told them I was wondering about Sjögren’s but man, that practice sucks when you’re not directly in front of the doctor. The very first time I mentioned my symptoms, I was told that Lyrica causes dry eyes. I told them I’m not using it! No acknowledgement.

After the first opthalmologist appointment and they’d asked for a report, I told them the doctor had taken down the list of meds I’m on to research if they could cause dry eyes. The admin said, I kid you not, “Yes. Lyrica and sleeping pills can cause dry eyes.”

I again told her I am not on Lyrica! Nor am I on sleeping pills! I took Lyrica for only one month last year! Haven’t had it for five months! I’m wondering about Sjögren’s.

No reply.

In the meantime, my eyes are both already damaged by the dryness and scratching. They’ve changed shape. They saw this via scans they take of your eyes. I’ve never had my eyes scanned before. I was extremely grateful I was there!

And there we go. While the rheumatologist’s team fob me off with telling me my problem is medication that I’m using, my eyes are damaged. We will check on their state in four months and if worse, make another plan besides the drops and ointments etc.

She gave me a pathology form to test for Sjögren’s and told me, like, seriously told me. So seriously so that she stopped typing and made eye contact with me when I didn’t agree with her, that my dear adoptees are blessed to have me.

I think because of how they behave and how no children’s home would be as kind, sending for so many assessments, aware of specific challenges, I agree. I mean, even some mothers have said they’d have never even thought of things like visual processing disorder, or dysgraphia or dyscalculia. My poor children would have been told they’re not concentrating or stupid…

But I too am blessed. They are teaching me how to love as Christ loved me. I knew Him, so I thought. I thought I was showing Him how much I loved Him. But as knowledge increases I realise I was a big disappointment despite how well meaning I was, yet He never gave up on me but kept wooing me. And so even as I deal with unpalatable things like one smearing bodily fluids on walls while ever repeating how much they love me, I grit my teeth, dispense discipline, ask the child to think about the purpose of things before they act, but also know through research that it is sadly quite normal for children and adults with her condition. And so, I extend grace. Forgiveness. “Forgive her, Father. For she knows not what she does.”

My girl told the psychologist that I gave her the best gift ever. When she’s feeling sad or angry or overwhelmed or like she wants to disappear, she goes and folds herself in the blanket I gave her that promised her she would forever be my little girl no matter how old she’d grow.

She loves me as imperfectly as I love God. I meant it when I said it but my actions don’t match. Not yet. Step by step. I will give her the same patience and understanding I received when I would step forward then fall backwards before stepping forwards again. If He loves children, how much more does He love children with additional needs?

We are all privileged to have each other.

Tonight as my girl watched me cooking peas for them, she told me she worried about me because she didn’t know how I kept going. I’d made them a pineapple smoothie, continued cooking, tidied up and still was standing preparing their food for tomorrow. She saw me.

I will also have ongoing glaucoma tests as it is highly heritable and my mother had it. So far, THAT test was great. We have a baseline for the coming years.

And that, my friends, is that. Out with the old ( doctor) and in with the new. My sight depends on it.