I don’t have a title for this one

At the hospital, we wait to see Rhema’s neurologist.

On this particular day he’s moved his office to the Orthopedic floor. It’s a hard, hard floor. To see little bodies broken, wounded, palsied and withered. The waiting room is bursting at the seams and children are crying. A team of medical workers rush by us, pushing a hospital bed. There’s a baby. In a carseat, on the bed. And the baby is covered with a hospital sheet. The parents follow quickly behind, fear etched on their faces. Oh Lord, I pray.

I don’t understand why children suffer. I don’t. But I believe He bottles tears, and one great day there will be an end to the pain in this hurting world.

Brandon murmurs, “If you ever need some perspective, a lesson in thankfulness, come to Children’s Hospital. That’s what I need to do, just come and sit here for a day.”

It’s exactly what God has been speaking to my heart. This book has challenged me to take a good, hard look at my grumbling, my self-absorbed-ness, the ingratitude of my heart. And to write down continuously the gifts God gives, to document the ways He loves me personally in a day.

Finally Dr. C calls us back. We walk into his office, and I notice my racing pulse, an old Rich Mullins song in my head: ‘So hold me, Jesus. ‘Cuz I’m shaking like a leaf.’ Oh, we’ve been here, done this. We’ve sat in the doctor’s office and received bad, shocking news before. This go-round, we already have a strong suspicion the EEG is not favorable.

But ask any mother in that waiting room, no matter how many times you come back to this place, it never gets easier. And discussions like these, with a doctor, about your child, the one you held in your womb and under your heart for nine months and now love everyday with a crazy mother-love – it alters you on some level and you never see the world the same again. No matter how many times you put on a brave face and calm smile and talk about the options, your mama’s heart still breaks. You still feel like you could lose it on the spot and curl up in a corner somewhere.

Last November, tests showed Rhema’s brain was spiking 40 times a minute. Today we learn her brain is spiking 58 times a minute. I cannot believe it. I’ve seen the graphs with the spikes and waves, the images of her brain. But I seriously don’t understand. I cannot wrap my head around 58 times a minute. “Is her brain gonna fry???”

We talk about trying meds that you can’t get in the US. We get a second opinion from one of the best epilepsy doctors at Children’s. He urges us to try high dose steroid therapy even though there are nasty side effects (like weight gain, high blood pressure, stunted growth, behavior changes, gastro problems, immune system suppression) and it may not even work. (My first response is Thanks, but no way, dude. But I am so desperate to help my child, and I just wish I knew how to do that).

We leave with a 3-month plan to wean her off the current med, and a 3-month plan to think and pray.

(Oh, and then there’s a Rhema-accident at home that involves 4 firemen and 2 paramedics… but that’s another blog.)

I endeavor to take the good days and the hard days with thanks.

I record how I’ve been blessed today with: 

~One giant blueberry pancake

~Perspective in the waiting room.

~Rhema’s toothless grin

~Her brain is not a mystery to God, her deepest parts known by Him, and every wild hair is counted

~Brandon’s forgiveness

~Carrie texting me a picture of herself with a margarita, “dear sister, when troubles come your way, consider it an opportunity for great joy.”

~Hope wanting to know what’s so gross about the gross motor room at school.

~My Bible study sisters praying for wisdom in our decision-making

~Walking out of that hospital, my girls happy and well at home

~My dear group of mama friends – determined to help me know I’m not alone – sending love and prayers all day

Thank you, Lord!

It’s true.

Just being simply thankful, truly thankful, isn’t changing the circumstance, but it’s changing me. 

I find myself bumping into peace. Even joy.