Comfortable with the Uncomfortable

It feels a bit odd to write about something other than the chaos that’s facing our nation and our world right now, but it’s a good diversion for me at the moment. I’m also not oblivious to the irony of writing about uncertainty and being placed in uncomfortable situations given everyone’s current circumstance!

I’ve not updated since Harper’s visit to Baltimore in January. At that time, we had just sent my husband off to OTS for nine weeks and then received the negative news from Harper’s EEG regarding her ESES, and I thought that was rock bottom.

I was wrong.

A week later, Harper got sick. Long story short, the illness led to pneumonia, plus a UTI, plus dehydration. We had over two weeks of fevers and coughing and vomiting, Tamiflu, three different antibiotics, and two different anti nausea medications- all on top of adjusting to a new seizure medicine. She and I both ended up out of school and work for about three weeks when we decided that we would need an extended leave of absence to let her build up her strength and immunity and try to catch back up academically.

I thought the extra one-on-one time would be a great opportunity for Harper to catch back up, but I was not prepared for the impact everything had had on her brain. You see, first off, Harper does not have a fully-functioning brain. She has a massive, inoperable cystic system taking up a quarter of her brain, plus excess fluid and damaged tissue that should not be there. Of course, you wouldn’t know that looking at her or talking to her, and you know why? GOD! He has done amazing things in that life of hers, things that only He could do, and for that I am forever grateful.

But that does mean that things tend to be a bit more challenging for Harper. She has to work a little harder and things don’t always come easily, so we give some extra time, some extra effort, some extra patience, some extra grace.

Well, throw into that the ESES diagnosis. ESES is known for the negative impacts on brain development, and causes regression- which means children often lose skills they once had mastered. In one article I read the doctor said it can be like waking up to a new traumatic brain injury every morning.

Now, add to that a 2-3 week long illness and missing instruction all that time, and starting a new seizure medication that has its own negative side effects (such as muscle tremors, extreme fatigue, and emotional struggles), and that’s where we found ourselves.

Fortunately we have an amazing, proactive doctor who caught things before severe damage was done, but we are dealing with the impacts. Harper is struggling with memory loss. We joke about it, but she often forgets what she’s doing in the middle of doing it or conversations that we literally JUST had. She loses things and gets lost and turned around easily. And she gets stuck on repeat, having the same conversations and asking the same questions over and over and over again.

There has also been an impact on Harper’s motor skills. She struggles with writing now. She can verbalize answers but getting them written down is a challenge. Her hands tire out quickly and she has a mild tremor now. Her gait and muscle tone have changed and she tiptoe walks quite a bit, which means she falls even more frequently than she did before- but she’s still just as strong-willed as ever and doesn’t understand, so we deal with a lot of injuries!

And finally, the fatigue… she is exhausted by mid afternoon every day, but won’t admit it, so she becomes quite a bear to deal with. We do not venture out much if we can help it because she gets so tired and can’t keep up with walking long distances but is too large for shopping carts and strollers. Because she is mobile, insurance will not cover a medical stroller, and those are quite expensive!

So, we’ve learned to adapt and get comfortable with the uncomfortable. As a result of her ever-changing condition, I had to step down from my career this past week, a decision that has been so very difficult. I love teaching, I love my school, I love my school family, and I love my students. But God has made it clear that He has placed Harper in my care for a reason, and in this season she needs my time and attention. There is also that uncomfortable feeling of our family moving back to one income and the expenses that are associated with her care, especially now that we travel to Baltimore so frequently for that care, but God has always provided and has already shown His faithfulness in this season.

So, here’s to another time of transition and watching God work. He is loving us so well through this all and showing His goodness at every turn- Harper’s latest EEG showed that the new medicine is working seizure-wise and her percentages dropped from 80-100% all the way down to 25-30%! That’s an incredible change, so we are hopeful that we will continue to see these numbers go down and start to see improvements in other areas as well.

God’s not done yet, y’all! ❤️

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