A good day

You just never know how God is going to speak love into your day: for one enthralled 3-year-old, it was a "lights and sirens" midnight ride in an ambulance. The same ride that struck pain through my heart spoke joy to hers.

God is watering my soul in the all-too-rare moments shared between my precious troisième fille - it is but a drop of bitter to the sweetness that these days occur in the confines of hospital walls. All in all, it's been a really great day. Amy is still pretty wobbly on her feet. She is doing a lot of posturing with her legs and feet, which can be a sign of high intracranial pressure (pressure within the skull).

There is no therapy for this bubbly little girl like water. As the shower rains down on her, I watch her soul expanding from a dried husk of the daughter I know and love, expanding, breathing life back into the dear wisp of spice this child normally is.

Her pain dissipates, and we get a glimpse of how much it is hampering her delight in life. If only she could live in the water, she would be a different child these days.

I am thankful that what relieves her most is not drugs or therapy, but some good old-fashioned straight-from-the-ground water, a little warmth, and Mama's touch and attention.

It might just be me...but her eyes seemed a bit better to me this evening. I pray it's a sign of even better days to come!

So far we only have a preliminary report on the MRI: "hopeful" to our rather overly hopeful neurologist, and downright scary to me! Some areas of her brain look "improved" and others look "worse". "Worse" how - that's what I would like to know! No details are available tonight, so I am handing it over to the One who bears my burdens for this night. Neurology won't come around until the afternoon hours tomorrow, at which point the final report should be available. Amelia has an appointment next Tuesday in the dreaded Blood & Marrow Transplant Clinic. Talk about striking fear in my heart. I never thought I'd breath those two phrases in the same sentence - "my daughter has an appointment" and "Blood & Marrow Transplant Clinic". Praying it's just a scare - everyone's overreacting - and I can go back to my cloistered life of relative bliss in the country, never to think in terms of enzyme deficiencies or transplants ever again! I am ready to shake the dust of this place off my feet - and hers - for good.

I don't know about tomorrow;
I just live from day to day.
I don't borrow from its sunshine
For its skies may turn to grey.
I don't worry o'er the future,
For I know what Jesus said.
And today I'll walk beside Him,
For He knows what is ahead.
~ Ira Stanphill, I Know Who Holds the Future