I promise you that I’m smacking the next person who looks at the craziness of our life and tries to reassure me that at least it can’t get any worse. I burned my arm on Sunday morning in a freak cooking accident. I was frying up Sunday dinner when I splashed hot grease all over my left forearm. I am now the proud owner of what my favorite GP promises me will be “a gnarly scar.” (Do people other than... Read more

I took Ella with me to Target over the weekend. We were running errands and she needed to get out of the house. That’s one of the biggest hurdles we’re facing with her – getting her exercise out of the house. She’s bored sitting around here all day, and she can’t go very far unless we take her. Add that in with how quickly she fatigues, and she’s sitting at home way too often. All of that to say that... Read more

I made Ella go back to her normal chore schedule today. I’m no longer accepting “my legs are weak” or “it’s hard with crutches” as an excuse. I’ve also chewed a raw spot on the inside of my mouth in worry and anxiety. There’s a lump in my throat that doesn’t ever seem to leave. I keep glancing away from her and slowly exhaling. I swipe the corners of my eyes and then turn a peaceful gaze back in her... Read more

After almost a week of increasing leg strength, Ella caught a cold from one of her siblings and began collapsing again. That was Friday. Her legs are still too weak to hold her. This cold has hit her really hard much more so than the other kids, and I know that’s part of having an autoimmune disease, but I’ve never seen such a huge difference between them before now. We’ve been to the GP and the chiropractor and have a neurology... Read more

Guess who got Confirmed this Saturday This Guy!!!!!! After two years of studying and prayer, our eldest son was Confirmed in the Catholic Church taking the name Denis after St Denis of Paris. He reasoned that a saint who not even death could silence was a good choice for a guy with a lot to say. All. The. Time. His Opa came down from Oklahoma City to be his sponsor. I watched the two of them together, grandfather and grandson,... Read more

We still don’t know… Our chiropractor suggested that Ella might have pandas which is encapsulated strep that can cause nerve issues. (You get exposed to strep, and your immune system fights it off but not all the way. The weak strep finds an out of the way place in your body to burrow in and wait. It builds a shell around itself and sits dormant and multiplying inside the capsule. Just being there can cause muscle weakness. That’s not the... Read more

Here are the kids this morning looking bright eyed in their Easter best….except #1 who looks tired after singing on Holy Thursday, Good Friday, and for Easter Vigil and then getting up to sing at 8 am Mass this morning. I think she’s about ready for a break. Ella is stronger and walking without assistance most of the time for the past two days. Her knees keep trying to buckle, but she’s not letting them. Thanks for your prayers, we can... Read more

She looked over my shoulder earlier this week while I was blogging and sighed “I have a name…I’m more than a number.” I explained to her about google and the internet and her own privacy, and she shook her head at me. “They’re all praying for me with a number….I have a name.” And she’s right. She does. Her name is Ella. If you’re going to pray for her, worry for her, and help us look for answers….the least we... Read more

She fell in Mass today.  I caught her, but she fell.  We were walking up to Communion and she slipped/tripped on an umbrella someone left on the floor of our pew. I saw it just before she got there and didn’t know what to do, and in my moment of indecision she went down. My mind isn’t in this yet. I’m not practiced enough to spot the obstacles and either point them out or move them, and there’s not much... Read more

After our unhelpful trip to the ER in which they ran no tests other than strength tests (asking #4 to push or pull against the doctors’ hands) and the subsequent consensus that she didn’t need physical help but a psychiatrist, we came home to regroup and figure out what our next step was to be. Thank you to all of you for your help in brainstorming this. We have a list of things to try. (She’s negative for Lyme disease,... Read more