I opened my Bible app last night before bed and the verse of the day was Romans 8:26…

“In the same way the Spirit also helps us in our weakness, because we do not know what to pray for as we should, but the Spirit himself intercedes for us with inexpressible groanings.”
‭‭Romans‬ ‭8:26‬ ‭CSB‬‬

I’ve read this verse dozens of times, but it hit me differently this week. See, I tend to gravitate to that first part of the verse- the Spirit helps me in my weakness- because that reassures and comforts me. I know I’ve got weaknesses, and knowing the Spirit helps me in those is life-saving some days.

But it was the rest of that verse that gave me pause this time, about not knowing what to pray for as we should. One version states it as not knowing what God wants us to pray for.

That’s what stopped me.

For over eight years, I have been praying various things over Harper. The concerns arise, the diagnoses are given, the needs are presented, and we pray specifically. And as we’ve done so, we have seen God move and work and answer, sometimes as I long for, sometimes not really as I wanted, and sometimes far greater than I could have imagined.

But I have felt a bit stuck lately, not knowing quite what to pray. Harper overall is doing well. We haven’t seen a seizure during the daytime since February. She stayed healthy this year with no infections or hospitalizations or crazy episodes of any kind, which was absolutely amazing. She’s staying steady with her neuro and cognitive development, still needing therapies (we’re adding physical therapy back into the mix so she’ll have four total appointments a week) but moving slowly forward instead of backward. Progress!

And we got the report today that there is improvement with this latest treatment for her ESES… a lot of information, but basically her overall percentages dropped from 100% to 80% on average with more localized activity, which still constitutes an ESES diagnosis, but is finally improvement!

Yet with all this positive feedback, I find myself not satisfied. The news is good. She’s well enough. But… I have this “but” lingering over me.

Because well enough is not good enough for me.

I have wrestled with this for years now. I don’t want good enough. I want the best for my daughter. And I don’t want some improvement. I want total healing for her body! While I know I should be pleased that we have improvements (and trust me, to an extent, I am!), I am not ready to settle for a 20% decrease with LOADS of medications that have loads of side effects. I want to see a complete elimination of this disorder. And then I want to see a complete elimination of all of these medications she has had to have pumped in her little body for years now.

Yet at the same time, I know to praise God for any improvements. This is the first improvement of any kind we’ve seen on an EEG in the last year! I know to thank Him for any treatment that He has provided that helps her, even when I don’t like the side effects because they are saving her life and protecting her brain from further damage. And I know to shout of His goodness NO MATTER WHAT, because regardless of what happens with Harper (or any of us!), He is good. He always has been and He always will be, and He owes me nothing.

So I do not always know exactly what to pray.

But praise God for this reminder, that the Spirit helps me in my weakness, and intercedes for me when I am at a loss of what exactly to pray. So often I think that I have to have the words for everything, that I have to know exactly what to say and how to say it, and I feel like I’m failing when I don’t.

But it’s not about me! He hasn’t left me to my own devices. He doesn’t expect me to have all the answers. He knows my weaknesses, He knows my heart, and He loves me enough to not leave me stranded.

Today, that is news to celebrate.

And so, we celebrate, we thank Him for what He has done, what He is doing, and what He will do. And we keep talking to Jesus, even if we aren’t exactly sure of what to pray… knowing that when our words fall short, the Spirit is interceding on our behalf.