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“I had to go in the tube so they could take pictures of my bump,” Millie announced.

(I speak child… allow me to interpret)

She got an MRI of her brain.

A quick history…

Five years ago we were in the Minneapolis Children’s Hospital after Millie had a spontaneous grade 3-4 grade brain bleed after birth. After a jet flight, she had brain surgery to put a Rickham Reservoir into the ventricle to slowly clear the blood. A neurosurgeon came in each day or two, inserted a needle into the “bump” and drew out the bloody fluid a little at a time waiting for it to clear before they could put in a permanent shunt. It took nearly two months. Brain bleeds cause brain damage and hydrocephaly. The surgeons told us to expect some form of cerebral palsy.

IMG_3672We spent Thanksgiving, Christmas, and New Year’s in the hospital with Millie that year. I stayed in the hospital and Ronald McDonald house (please support this amazing organization whenever possible). Andy flew back and forth from South Carolina as he had just started a new job a few weeks before her birth. Belle and MaryAlice moved in with my sister’s family and Abby stayed at home thanks to Danielle (caregiver turned family).

One day the surgeons were discussing dates for putting in the permanent shunt and a few days later came in and asked when we were ready to leave? Her brain started to absorb the CNS fluid on its own eliminating the need for a permanent shunt!

Upon arrival in South Carolina, Millie started an early intervention program for at-risk children birth to three. She was seen weekly by an early interventionist, physical therapist, occupational therapist, and speech therapist. She was a little behind, but at three was caught up and released from the program.

IMG_3678She continued to be followed by neurosurgery every six months to a year because her ventricles remained unusually large. Millie has had MRIs and EEGs since she was born. They have been hard. We’ve had times where she didn’t understand and had to be “burrito-ed” and held down and other times we’ve had to sedate her. Overall, these procedures feel like they take years off my life.

(*longer version of Millie’s story… https://www.caringbridge.org/visit/millieelizabethmoore)

Fast forward to today…

We talked about going in the tube and laying still while the loud banging takes pictures, but one never knows if that will work when walking into radiology with the huge machine looming. She climbed up… laid perfectly still… not even a peep until it was done. We waited to see the doctor after the MRI so he could review the results with us.

IMG_3671Millie is doing great. I haven’t worried about her in a while, but his next words , took me oddly by surprise.

“I don’t see a need to scan her or have you come to see me each year anymore. Her scans are stable. She looks great!” the neurosurgeon said.

I’ve heard tough reports so many times, sadly, I didn’t realize how much I’ve come to expect them. I was caught off guard with this good one. After stopping by the cafe for a reward, we loaded up and feeling a whole lot lighter, we hit the road.

For the first time all my trips to MUSC I was grateful to be alone in the car so no one had to hear me sing and watch me cry the entire two-plus hours home. I didn’t realize the weight I’d been carrying until it lifted.

“All a girl needs in the dark night is her God”

But when then night passes, if even for a moment…

Psalms 100:1-5

“Shout joyfully to the Lord , all the earth. Serve the Lord with gladness; Come before Him with joyful singing. Know that the Lord Himself is God; It is He who has made us, and not we ourselves; We are His people and the sheep of His pasture. Enter His gates with thanksgiving And His courts with praise. Give thanks to Him, bless His name. For the Lord is good; His lovingkindness is everlasting And His faithfulness to all generations.”

I’m aspiring to celebrate better and enjoy the moments. Alone in the car was a good place to start. It greatly differed from the anxiousness I usually have when traveling alone.

Jeremy Camp’s “There Will Be A Day” Keep playing in my head. It’s such a great picture of what is to come.   

I try to hold on to this world with everything I have
But I feel the weight of what it brings, and the hurt that tries to grab
The many trials that seem to never end, His word declares this truth,
That we will enter in this rest with wonders anew

(CHORUS)

But I hold on to this hope and the promise that He brings
That there will be a place with no more suffering
There will be a day with no more tears, no more pain, and no more fears
There will be a day when the burdens of this place,
Will be no more, we’ll see Jesus face to face
But until that day, we’ll hold on to you always

I know the journey seems so long
You feel you’re walking on your own
But there has never been a step
Where you’ve walked out all alone
Troubled soul don’t lose your heart
‘Cause joy and peace he brings
And the beauty that’s in store
Outweighs the hurt of life’s sting

(CHORUS)

I can’t wait until that day where the very one
I’ve lived for always will wipe away the sorrow that I’ve faced
To touch the scars that rescued me from a life of shame
And misery, this is why, this is why I sing

(CHORUS)
He’ll wipe away the tears, He’ll wipe away the tears
There will be a day
Songwriters: Jeremy Camp
There Will Be a Day lyrics © Capitol Christian Music Group