He goes before

An opthamologist from the U of M requested photos of Amelia before and after her illness where her conjugation (tracking) could be seen. I found it interesting that I had a hard time finding any photos of her eyes not tracking in my blog folder, where I keep my favorite photos. I found many more in the snapshot folder. Here are a few I sent him:

Amelia in September, prior to encephalitis.

Amelia 2 days before hospitalization for encephalitis - already sick.

Amelia on day 8 of hospital stay #1.

Amelia after discharge from hospital stay #2.

Amelia during hospital stay #3.

I did a lot of research two days ago, and found much that was useful. A lot of it is scary, too. I found some helpful information about the effects of encephalitis on behavior at a UK site. The "tips" way down at the bottom are especially helpful. Aaron and I had a parenting "powwow" and came up with a list of strategies to deal with Amy's changing needs from a training/discipline perspective. I believe she is currently functioning around a 12-18 month level, which requires a massive adjustment in how I teach her, correct her, and direct her through the day. In the past few days, since integrating more rest and quiet time into her routine, and changing my parenting strategy a bit, there have been significantly fewer tears of frustration for her. I feel a sense of victory that, at least in this small way, I am able to help her deal with her frustration and pain.

Some specific prayer requests for Amelia as her healing and illness progresses:

• Regaining behavioral skills, such as an understanding of permanence, long-term memory skills, cause-and-effect relationship, impulse control and lessening of separation anxiety.
• Improved vision and eye tracking.
• Improved small and large motor skills, especially walking and running, hand-eye coordination, coloring/writing/copying skills, self-feeding, self-toileting, and dressing.
• Protection against further head injury during times of poor balance.
• Proper immune function as she recovers, particularly protection from conversion to multiple sclerosis. Amelia is currently teetering on the "edge" of this immune function disorder, which would be very debilitating for her if it develops at such a young age.
• Joy in relationships, especially with her siblings and parents.
• No further signs of infection or demyelination of her brain.
• The need for other therapies or treatments would be abundantly clear. Right now, doctors are proposing eye treatment (such as an eye patch), plasmapheresis, immunoglobulin G therapy, occupational/physical therapy for the relearning of lost skills, and repeated therapeutic spinal taps to remove excess pressure caused by her inflamed brain. It is hard to sort through all that as a parent, and decide what needs to be done at this moment in time.

God himself watched his dear son spit upon, mocked, tortured, falsely accused, beaten and killed. I stand firm on the knowledge that, in this watching of a dear child suffer, as in all else: The Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged. (Deuteronomy 31:8)

When fear sets adrift

I wrote this the morning Amelia was admitted to the hospital, last Wednesday. When I was writing it, I had no idea yet what the day would hold. I wrote it simply because the concepts in the table were revolutionary to me. In some visceral sense, I knew that all the emotions in the third column stem not from God or even my own soul, but from Satan, chief lier of the universe. Seeing them written out, in black and white, was a moment of new clarity for me.

Adam & Eve Created in His Image (Genesis 1 & 2)	Adam & Eve Chose to Try to Be Like God (Gen. 3)	This Rebellion Resulted in Pain (Genesis 3 & 4)
Acceptance Belonging Competence Equity Identity Security Significance Transcendence	Sin	Rejection Loneliness Inadequacy Exploitation Confusion Anxiety Worthlessness Spiritual Void

Adapted from Craig Ellison's From Eden to the Couch,

(2002) Christian Counseling Today, 10 (1), 30.

Drifting through pain is no fun. James MacDonald states, The good doesn't come until you embrace your trial (II Corinthians 12). I am aware of the weight of these words. I don't say them lightly, as though I could somehow just skip into that reality. I'm just telling you where the rock is so you can get your feet on it. If you're in the water right now and the waves are crashing, you've got to get back on solid ground. That's not going to happen until you embrace this trial. For the sake of Christ, then, I am content with weaknesses. The NIV says, I delight in weaknesses. (II Corinthians 12:10) Unless you embrace what God is doing with unwavering submission, you will not reap the good. Jesus Himself modeled this kind of victory in the garden when He prayed, "Your will be done." Not my will, God, but Your will. That's the essence of submission, and that's where victory begins.

When Satan turns my head and the lies of rejection, loneliness, inadequacy, exploitation, confusion, anxiety, worthlessness, and spiritual void again creep in, there I am in that awful moment in the garden, searching for some leaves to cover my shame and my nakedness. What has really happened, though? I have lost my footing on the rock. I feel the intensity of panic when I realize afresh separation from God. The curse is new and real and awful in that moment. Once, without Christ, forever set adrift by my own sin, I was in the deeps of the ocean, struggling alone. Yet, now I'm in the shallows, near the beach, boulders just underneath the feet I'm frantically kicking. For now I know that I have eternal life! (I John 5:13) I am no longer a slave to the lies that entered through the fall, for if the Son sets me free, I am free indeed (John 8:36). Instead, I am crucified with Christ: neverthless I live; yet not I, but Christ liveth in me: and the life which I now live in the flesh I live by the faith of the Son of God, who loved me, and gave himself for me. (Galatians 2:20) And there is the solid rock, just under my kicking feet.

Unearthing a happy birthday

In amongst the guts of family life, the hidden messiness of relationships, there is the golden nugget at the center of the walk in Christ's footsteps. Surrounded by dirty dishes and tempers flaring and children late to bed instead of early on what was "supposed to be" a special night, right in there with the ugliness and failure and disappointments lie the greatest blessings, the happiest moments. What happens when two people marry each other for love and dreams and find out instead that they must sacrifice both for the service of the other? God steps into the gap and weaves a thousand threads that bind them forever together. He weaves children into the story, and years and years of walking hand in hand even when circumstances almost forestall your walking at all.

God helps you raise your camera and see your wife and children in a vignette of beauty that ignores the mess that crowds in from all sides. God makes beautiful in a way an outsider could never understand. And that cake with forgotten ingredients is a thing of beauty to the wife who looks through the eyes of love Christ bestowed.

God leads you to the child standing in a frightened moment by your over-full fridge, a child frightened by the very dinner you have been struggling to prepare for hours on end. He helps you ignore the late bedtime and he loosens the tight bands of anger that swell around your throat and brings laughter bubbling up from some deep reservoir you'd forgotten.

"Papa?", she says. "IT has legs! Did you shoot that?" We all laugh, and she brings forth a trembling hand to just touch the lobster tails in the fridge. Husband stands guard to give her the gumption. Wife ignores the fish smell invading the kitchen. In between the moments of over-due baths (full of splashing) and pajamas (dug out of endless piles of unfolded laundry) and difficult bedtimes (full of tears and parents raising voices and hopeless grasping at routine after all was torn up again for a sick little girl)...in between the chaos and the cacophony and wits' end, there is grace and love and joy. It is the promise for those who will take up their cross and follow...If you obey my commands, you will remain in my love, just as I have obeyed my Father's commands and remain in his love. I have told you this so that my joy may be in you and that your joy may be complete. (John 15:10-11)

The day is long over, and we are still reveling in our celebration plucked out of the cannonade of post-hospital life. My first reaction when Aaron pulled out Julia Child at 10 p.m. was consternation, I admit. A testament to his years working in seafood restaurants, a brief 30 minutes later Homard à l'américaine simmers fragrant on the stove; and every dish we own is dirty. Two wine glasses are polished from among the chaos, and the sparkles of a Beaulieu Chardonnay distract from all that does not sparkle elsewhere. At some point in the evening, I realize that I have become strangely comfortable with carving joy out of the granite bank of disappointment. It is part of what He is working, this Spirit that now lives in me. God opened up my soul with cancer, cracked open the hardened shell of protection I had constructed, layer upon layer. He got into the tender underside of my heart when the suffering piled on top of what should have been a brief stint with "the good kind of cancer". And then came Amelia, and the loss of the last semblance of control I was clinging to. Now, in a new way, I can say that I am crucified with Christ: neverthless I live; yet not I, but Christ liveth in me: and the life which I now live in the flesh I live by the faith of the Son of God, who loved me, and gave himself for me. (Galatians 2:20) Thirty-one years of flailing about to protect what never belonged to me in the first place, and I feel the dawn of a new time of my life on this crazy, chaotic, calamitous, crippled birthday.

...walk by the Spirit, and you will not gratify the desires of the flesh. For the desires of the flesh are against the Spirit, and the desires of the Spirit are against the flesh, for these are opposed to each other, to keep you from doing the things you want to do. Now the works of the flesh are evident: impurity, sensuality...enmity, strife, jealousy, fits of anger, rivalries, dissensions, divisions, envy, ...and things like these. But the fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, self-control; against such things there is no law. And those who belong to Christ Jesus have crucified the flesh with its passions and desires. If we live by the Spirit, let us also walk by the Spirit. Let us not become conceited, provoking one another, envying one another. (from Galatians 5)

Gratitude unlocks the fullness of life. It turns what we have into enough, and more. It turns denial into acceptance, chaos to order, confusion to clarity. It can turn a meal into a feast, a house into a home, a stranger into a friend. Gratitude makes sense of our past, brings peace for and creates a vision for tomorrow. ~ Melody Beattie

To educate yourself for the feeling of gratitude means to take nothing for granted, but to always seek out and value the kind that will stand behind the action. Nothing that is done for you is a matter of course. Everything originates in a will for the good, which is directed at you. Train yourself never to put off the word or action for the expression of gratitude. ~ Albert Schweitzer ~

Comfort food

My go-to comfort food recipe is getting dusted off this week. It's going to be a busy one: catch up from hospital stays always clogs up the works of the household. Amelia continues to do very well, and is even tolerating laying semi-flat in bed. Aaron is back to work tomorrow, and on call to boot. What a way to spend my 31st birthday! At least we will be home for it, though!

Whole Grain Mac 'n' Cheese Casserole

Ingredients

12 ounces multigrain elbow macaroni

1 head cauliflower, roughly chopped

4 slices multigrain bread, torn

1/2 cup fresh flat-leaf parsley, chopped

3 tablespoons butter

Kosher salt and black pepper

2 cups grated extra-sharp Cheddar

1 1/2 cups full fat sour cream

1/2 cup full fat raw milk

Directions

• Heat oven to 400° F. Cook the pasta according to the package directions, adding the cauliflower during the last 3 minutes of cooking time; drain.
• Meanwhile, pulse the bread in a food processor until coarse crumbs form. Add the parsley, 2 tablespoons of melted butter, and 1/4 teaspoon each salt and pepper and pulse to combine; set aside.
• Return the pasta pot to medium heat and add the remaining tablespoon of butter. Mix in the pasta, cauliflower, cheese, sour cream, milk, 1 teaspoon of salt & 1/2 teaspoon of pepper. Stir until combined.
• Transfer to a shallow 3-quart baking dish, sprinkle with the bread crumbs, and bake until golden brown, 12 to 15 minutes.

Recipe adapted from Real Simple, photo courtesy of Carrots 'n' Cake. Why do I use full fat milk products and butter instead of an unsaturated vegetable oil option? Read here for more information.