I haven’t slept well the past two nights. I have felt so much unsettling turmoil in my soul, that resting peacefully is hard. And this turmoil invades my dreams even when I do doze off.

I don’t even know exactly why. I have examined this and tried to figure it out.

My best guess is that it’s just the cumulative emotional ups and downs; concern for Lilyan’s and all of the other children’s welfare; constant necessary alertness and planning; continual required changes in our daily plans; and the fatigue that comes from all of these things — all with no let-up for well over two months now.

I feel like I reach deep down inside myself every morning and pull out any remaining scraps of anything that will enable me to get through each day and care for my family. And there are just so few scraps left now.

When I woke up this morning, I just stayed on my pillow, staring out through my window. I watched the trees blowing in the wind heralding an approaching storm, and as the thunder started to rumble in the distance and the sky gradually darkened, I felt all of my inner being do the same thing. That darkness just spread over me and through me, and it pressed so suffocatingly on my heart that I didn’t see how I could possibly get up and start my day.

Even before I did finally get up, I was fully aware of the need to stop reaching inside of myself (I already know how utterly futile this is!) and to look up to the Source of my strength instead. I prayed passionately as I stared out of the window.

“God, I don’t know how much longer all of this is going to drag on. I don’t know how to keep going. But I know that you know all, and that every second is somehow part of your good and perfect plan for Lilyan; for me; for Scott’s and my marriage; for each of our other children; even for Greg (our son-in-law and The Shepherd’s Crook Orphan Ministry’s Executive Assistant) who is keeping TSC going for us as we just try to survive day after day and guiltily leave him handling everything with the ministry. Please give me what I need to get up and do this day. Please fill me with the energy I need and JOY that I should be feeling for the honor of being the mother in this family and for walking a holy path laid out by you before the beginning of time.”

I’d like to say that I was suddenly infused with joy and strength and passion for this coming day’s work. But I wasn’t. I felt nothing.

But I did get up. And that was something.

I took a few minutes to do a little quiet time, and these words from Charles Spurgeon, and these verses from David’s heart in the Psalms did calm the turmoil just a bit:

“The Lord will perfect that which concerneth me.” Psalm 138:8

“If we indulge in any confidence which is not grounded on the Rock of ages, our confidence is worse than a dream, it will fall upon us, and cover us with its ruins, to our sorrow and confusion. The Psalmist was wise; he rested upon nothing short of the Lord’s work.”
~ Charles Spurgeon

“When my spirit faints within me,
you know my way! Attend to my cry,
    for I am brought very low!” Psalm 142:3, 6

“I stretch out my hands to you;
    my soul thirsts for you like a parched land.
Let me hear in the morning of your steadfast love,
for in you I trust.
Make me know the way I should go,
    for to you I lift up my soul.” Psalm 143: 6, 8

Lilyan had her weekly surgery yesterday. The report was the same as every week. The wound does appear to be healing; still very far to go; still puzzled by her daily fevers, etc., etc., etc.

Again I say, we are very thankful that healing is taking place, and that the infection is improving, but we tire of seeing our girl struggle through these fevers daily. We are weary of weekly surgeries. It breaks our hearts to see her losing muscle mass and strength (she is losing about a pound a week still, and we think much of that is muscle mass). Here is a picture of her trying to get through school earlier this week in spite of a 102.4º temperature. She was determined to finish her school work. She is amazing and strong and just presses on every single day.

Lilyan’s neurologist joined the multiple teams navigating her journey this week, and we do feel like he has shed some light on the possible cause for her fevers. He showed us X-rays of Lilyan’s Chiari malformation (part of her spina bifida). He said that the areas of her brain being stretched by her Chiari could definitely affect her body’s ability to regulate temperature under times of stress. Everyone involved believes this sounds plausible, and it also explains why she has always run fever under times of emotional stress or during times of fear. This just happens to some kids who have neurological issues like hers.

The good news is that this means, if everyone is correct (and in our guts, we feel they are), her infection truly is responding, and there is nothing big to worry about. The bad news is that this could stretch out for many months before the body gets itself back to a place of healthy, stable temperatures, and we can’t do anything except stay the course day after day, treating her fevers and modifying our days as needed to get her through each one. And keeping her away from any potential illnesses, which means continuing to stay mostly cut off from the world. We are all very tired of this part.

It is also looking more and more unlikely that Lilyan’s wound will heal in time for her to do any swimming in her Make-a-Wish pool this summer, and this just breaks my heart. We have bought her a special deck umbrella that she can use to at least spend time out there with us in the shade when it isn’t too hot and humid, but this is certainly not the kind of summer we would’ve chosen.

I do feel a little better prepared for the day, and the hard days ahead. But I also feel very fragile. Like a wisp of wind would knock me back down. I will have to lean heavily on these words throughout the day, I’m sure.

We have much to be thankful for and God’s promises to carry us through anything ahead. My head knows this, and I will trust the Holy Spirit to, in His good time, bury this deep in my heart as well.