Some days we wake up and the sun is shining and the birds are chirping and we just bask in the radiance of God’s glory. We’re excited to see what He has in store for us that day, and joy exudes from our soul. Praising comes naturally without a second thought.

And then there are the other days. The days it feels that your prayers are being ignored. The days it feels as if Satan is coming at you with all he’s got. The days you have to look really hard for goodness because your eyes are clouded with tears. The days it just seems easier to pull the covers back over your head and give up.

Those are the days of digging in deep and clinging fast- where you have to make yourself choose to believe, choose to trust, choose to keep moving, choose to see the good, choose to praise no matter what.

It’s all about the choice.

We traveled to Baltimore this past week with high hopes of getting answers for Harper. We were not getting much information from Duke, and we wanted to be sure that the medication she was on was really working. For the first time in years she was down to just one seizure medication, which was great, but we wanted to know that it was doing the job.

It wasn’t.

In the past, Harper was diagnosed with ESES in addition to everything else, which meant her brain was misfiring at night, affecting her cognitive development and learning. We’ve been treating that for years, and most kids outgrow it when they hit puberty.

As we know, Harper isn’t most kids, and while it seemed to improve some at the onset of puberty, this week’s EEG showed that her SWI is back to 90% (give or take depending on the time). That’s how frequently her brain is misfiring in her sleep. She also has frequent misfiring during waking hours.

With some trial and error, the doctors ended the study with us adding two new medications to her daily routine, both with new side effects (fatigue, dizziness/vertigo, memory impairment, changes in gait, etc). Unfortunately, the EEG did not show significant change- no change at all at night, and only mild improvements during the day.

But, this point, they don’t quite know what else to do.

So they’ve sent us home for a month on this protocol to see if it helps with a little more time, and in the meantime we wait for neuropsych to finalize the reports on their end to see where we stand in terms of her learning and cognitive function. In one month we return to Baltimore for an overnight check to see how the EEG looks.

It’s easy to feel dejected right now. My heart is aching and the emotions are raw. We came with so many questions, and we leave with so many more. Are we making the right decisions? Is there something we can do differently? Are the side effects of the meds worth it? What if there’s no improvement in a month? Are we running out of options? And the age-old question… why?

But those questions without answers on our end are questions God has already answered in His timing. These are battles He has already won, problems He has already solved, victories He already holds. So we have to choose to believe, choose to trust, choose to praise, even when it hurts.

No matter what, He is good 💜