What’s RIght

I told my daughter I would work on writing my book. I can’t think about that yet. There’s too much on my mind. 

Did I remember to schedule that appointment? Better check the patient portal. 

What if they take my son? He should get his license so he will have ID on him. Find a time to go to the DMV. 

My medicine is late. I won’t be able to get my infusion tomorrow. I should reschedule that. 

They’ve been seen near my daughter’s workplace. Is she going to be ok? 

They said my medicine is coming. Ok. But now I need to cancel my injection and reschedule it for next week, because that is late too. I already feel so run down. Ugh, my shoulder hurts. Better do my exercises. 

What is this going to do to them? What will they remember from this. 

OMG, I’m in so much pain. Why did I attempt that new exercise last night? That was really stupid, I knew I shouldn’t have done that. Now I’m in a flare and I’ll have to do the setback protocol. I’ve worked so hard to progress this far. I hate it when this happens. Maybe I shouldn’t move at all, just curl up in a little ball so I never get injured again. But of course I get subluxed in my sleep, so…that’s out.

A disabled man died and his father couldn’t be there at his funeral. Now they’re saying he died because his father was his caregiver. He’s been in this country for 23 years, I think. How could they do this? 

My husband is my caregiver sometimes. What would I do without him?

What if they take my husband and leave his car. What if they come for my in-laws. They won’t do that. Right? They’ve came here legally. They’re US citizens. 

They detained US citizens. 

Did my son get his appointment yet? I should ask him.

I can’t believe there are people who want this. What happened to all the outrage during covid? They were so upset about their freedoms being violated. What about these freedoms, these rights? Do they not care? They’re still talking about how so much is the other side’s fault. And they’re Christian. I’m Christian. This isn’t what Jesus would want. How can they think this is ok? They said I wasn’t the right kind of Christian. I’m pretty sure I am. Am I?

I should call my grandma. 

I have to make that cardiology appointment for my daughter. And she needs more socks. I can’t believe how many socks these kids have gone through, and yet sometimes they’re still wearing the socks they had in elementary school. How is that comfortable. Wait, where are my socks? 

Will I be safe if I blow my whistle? Will they try to hurt me? I want to help, but I’m disabled. I don’t know what to do. I’m so scared, but I have to do something. What can I do if I see this happen? Will I be brave enough to do something?

How come I have one sock for like 6 pairs, and none of them have matches. I just bought these. 

They shot Alex for witnessing. For helping. 

That’s what Jesus would do, right? He would help.

Oh Heavenly Father, help me to do what’s right. Help them do what is right. This isn’t right.

I can help at my church. I feel safe at my church. I can contact my representatives. Are they doing anything about this? Probably, I mean they’re well known for opposing. Why can’t I find the time to write to them. I’m such a bad person, I make tiktok’s instead of writing. They sent me a form letter last time. I bet there’s hundreds of people writing. 

I need to buy oat milk. I want a piece of chocolate, but I’m not eating sugar right now. All the the good it’s doing, I’m still so inflamed. 

Is my medicine here yet?

Oh Lord, another news alert. I hate hearing his voice. Don’t look away. Watch and listen. 

I did. I have been! I’ve been watching and listening for a decade. I’m so tired. 

I’m so privileged. I shouldn’t look away. Go write that letter!

I had a nightmare last night. I woke up and I couldn’t breathe. I just need to zone out.

He couldn’t breathe. He couldn’t breathe. He couldn’t breathe. 

Help me to do what’s right. 

Call the school back, we have the IEP next month. I need to request the documents early. I hope they do what’s right. What are we doing for dinner? I don’t want to cook, I’m so tired, but I should. A good mom would cook. 

I should teach my kids how to write to them too. Do they know who our representative is? They do, right?

We have tethered cord consults next month. What if they have tethered cord? Will they take our insurance? Will the kids end up like me? Please don’t let them end up like me.

Idaho is considering cutting a ton of benefits from medicaid. Thankfully we don’t live in Idaho. That doesn’t matter, others do! Your privilege is showing again! I should do something. 

Do something! Do something! Do something!

What if they take them? They’ve already taken so many. That little boy with the bunny ears is still in Texas. I cried when I saw that.

Don’t look away. Watch. Listen. DO SOMETHING!

Come on, it’s time to go. Time for PT. Get up. Get your purse. Don’t be late. 

DO SOMETHING. DO SOMETHING. DO ANYTHING!

I hope I do what’s right. 

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Misconceptions I Have Heard about EDS