God of all comfort, stay away from my baby?

I start my job, and she starts quaking again. Six months, maybe more, have passed since the last seizure, so long that I've forgotten the weight of the worry you wear like a heavy winter blanket around your shoulders all day long. I carry her with me to work, carry her heavy and set on vibrate in my pocket in the form of a cell phone, jump whenever it goes off...all just false alarms. I run out of class to answer all the calls from the hospital prefix, and the operators reminding me of upcoming appointments probably wonder at my sigh of relief followed by snappish, I can't talk now, sorry, I'm at work. Mentally, I wipe the sweat collected on my brain's brow, she's not in the hospital, everything is quiet and okay for now.

She seizes mostly in the evening and at night, and I wake with her, cycling like we did when she was a baby, every 2 hours or so. I grit my teeth and bear it, hold the party line when my husband shoos her off to her own bed at 9 p.m., aching to hold her, know she's okay. Sync my breathing with hers, know her breath is still coming, regular and true and deep. I hold him instead, and sleep light, as if the mattress is made of pins, until she creeps into bed with us around midnight, grasps my hand, and I fall deeper, peaceful now to the rhythm of her sucking on her "nuksie".

Sometimes I wonder if I should be tougher. But I wasn't made of the stern stuff. I have more playful and more lenience in bones that feel so old sometimes. I rest on the blue chair in the afternoons like a grandma and watch the children dance in the living room in the falling rays. Sunbeam babies in halcyon days, spectator mama laughing at antics till dinner.

She tells me Jesus came, two nights ago. She's told me this only twice before, once shortly after her brain infection that held her in a hammock hovering over death's yawning darkness, the great river that separates us from those we love until we, too, swim into the night and cross to the light. She was only three then, and I didn't answer much, just listened. Then at 4 1/2, after a 2 hour seizure in the ER, she told me of Him again, the same Jesus with His yellow hair and happy face and blue clothes and funny belt and feet that glow. This time He brought her angel to play with her and make her laugh, because He knew how scared she was. Her angel has orange hair, spiky, and she has wings but she doesn't fly, she dances and spins and flips about on the floor in a funny way that makes sick girls hovering in some unconscious abyss laugh. Her angel laughs like a thousand bells and when she smiles, her whole face smiles. Now this third time, she comes to me, with the story of the angel and Jesus, the same story, and she is only a month shy of 6 now.

I can't ignore the yellow-haired Jesus with His blue clothes and the orange spiky haired angel who dances and smiles with her whole face. Because for 3 whole years now she's said the same things. And always the same: when they come to her, they come to comfort and make her laugh when she is sad and scared because she can't be with me. Is this heaven, I wonder? Not that we forget, but that we are comforted, and we are loved, we can stand it until the others get here to be with us again? Does time tick slowly like when you can't sleep on Christmas Eve, or does it fly by like when you're sleeping on a regular old night cuddling someone you love?

She looks up at me, face glowing, radiant, full of Jesus, and she brushes tears from my cheeks. She laughs and says, Isn't it beautiful, Mama? Aren't you glad Jesus comes for me? And it is a sour, hollow lump in my throat. Oh, how I want to be thankful. But oh, how I want to keep you, my girl! I don't know what Jesus coming means. I don't like seizures and I don't like you needing comfort from anyone but me.

But what will happen to a warrioress who has laughed with her angel and smiled at Jesus three whole times, and remembers? What will this child carry into the world, for whatever time she is aflame in our world? How can I be jealous of time and the Creator of life?

I hold her tentatively to my chest, feeling her energy pulse rhythmic like the singing of a star. Warm like a campfire just lit between the palms on an autumn night. So alive. And it is I, older and wiser one?, who comes away comforted.

imperfect prose

Amy joins the Teletubbies {Mayo Hospital Stay Day 1}

If you are new here, you may not have heard about my daughter Amelia, who survived a life-threatening brain infection at age 3. After her infection, she suffered a second assault on her tiny body...an auto-immune reaction to the infection stripped her brain of it's protective fatty myelin coating that insulates all the nerves. After completely losing the ability to walk or sit unassisted, feed herself, swallow and chew, and suffering severe speech, hearing, and vision losses, she made a dramatic recovery that can only be credited to God (with help from a hefty dose of steroids for 6 months straight). To read more about Amelia's original illness, click the tab at the top of the page above my blog name.

Amelia was hospitalized today to investigate her one remaining issue: a severe seizure disorder that continues despite high doses of life-altering anti-seizure medications. Amelia is doing great in the hospital. God granted us a delightful 2 full hours playing in their amazing play room before Amelia had to be confined to her room.

What a set-up for a kid trapped in the medical world! Every piece of medical equipment you can imagine - down at her level to see, touch, and try!

Then the hard part - getting "wired up" to the machine that reads her brain waves! This involves scratching the scalp, scrubbing with rubbing alcohol (ouch!), attaching electrodes with an alcohol based glue, and then taping them to the scalp. Quite a challenge with this kid, who falls into the "hair gifted" category!

She had about enough by the time they were finished, but remained her sweet self, much to the amazement of the technicians attaching the leads to her head. What a difference child training makes in the happiness of the child, no matter what the circumstances! I have recently discovered the timely and sweet mothering blog of experienced mom Juana Mikels.  Take a look - great resource on gentle but Biblical discipline. Although I disagree with her stance on infant schedules - as I am a staunch and out-spoken advocate of feed-on-demand and attachment parenting of newborns - she lends a voice of experience that gives many great practical tips about things like time-outs, quiet time in bedrooms even for small children, and organizing your home (from my series this week, you are probably getting the sense that I need all the organizational tips I can get!!).

All done, simply sweet, even though she had a seizure while they were "wiring her up". I think she looks like a delightfully girly and beautiful version of a Teletubby. Her sisters were pretty smitten with her sweet new hat as well! We ask for your prayers. Amelia will be in the hospital for 3-5 days unless we miraculously get enough seizures captured sooner. We are confined to a 10x10 room in the hospital - and connected to wires. Quite a challenge for this active 4-year-old and her mother!

Being in the hospital somehow makes me long for the much easier days I lived as a single woman and nurse. Every beep, every smell, sound, the lay-out of the rooms...it's all still as familiar as a comfortable pair of jeans. It is hard to be on the other side of the coin...the patient, handcuffed - even though I usually know what to do - to help with the actual "work" here. It certainly is a different life God has called me to these days. I have learned so much about Him being in these shoes...like one of my favorite Sarabeth Geoghegan songs says: "I don't want to go back to where I was/I want to stay right here/with You" (Opening, from the album Tired of Singing Sad Songs).

In the still of the night

In the last few weeks, Amelia has begun having a very scary type of seizure with increasing frequency.  Back in July, she had one nocturnal seizure (a seizure that takes place during the night while the child is asleep).  Now, in the past three weeks, she has had a seizure about 50% of the nights, usually when she is just falling asleep, but sometimes in the middle of the night.  These seizures are generalized, and involve the whole icky seizure spectrum, from vomiting and incontinence, to post-seizure echolalia (saying the same thing over and over and over and over...ad nauseam), anxiety and sometimes even a period of intense wakefulness before she crashes into a very long sleep.  The morning after these seizure nights, she sleeps very late in the morning, sometimes until noon.  Obviously, this has consequences for our whole family, beyond the worry and insomnia for parents, destroying our daily routine, wreaking havoc on our new school schedule, and deterring us from family activities that increase stress during the day and inevitably lead to nocturnal seizure activity.

Today we canceled our much-awaited trip to church camp this weekend.  How can you rationalize going somewhere so your healthy kids can have fun, knowing the whole time that your ill child will seize the entire weekend because of it, potentially having a life-threatening night seizure literally 50 or 60 miles from the nearest hospital and a helicopter ride from a neurologist?  The older kids are disappointed, but so compassionate.  They immediately hugged and comforted Amy when I told them the news this morning, and we planned something else fun...a trip to Grandma Nel's for the "Bigs" (as they call themselves), and an orchard excursion for Aaron and I and the "Littles".  This will allow us to walk the tightrope between enjoying family life without putting Amelia at increased risk for a major health event.

As the fields ripen for the last harvest of this nebulous Indian summer season, we look forward to a fall packed with hospitals and clinics and doctors and procedures yet again.  Facing up to a third fall of this is like walking into the torture chamber knowing exactly how you're going to be tortured.  Yet the stream of thankfulness also runs ever deeper, and the spiritual muscles are just flexing now to take on an old familiar task, drawing on a wellspring of faith that has filled, through God's grace, many times before, a reservoir of such abundance now that you can count on it's being there.  I live, therefore I praise (Psalm 146:2).  She lives still, even though so often in broken ways; therefore I praise.

As October fills with visits to Mayo and November fills with cancer tests and epilepsy monitoring in the hospital, we feel once again that we have totally lost control over our schedule.  Through other circumstances, we are no longer leading small group, which will offer respite and more flexibility in our weekly commitments.  We've pulled back from other ministries and activities, until our schedule looks mostly blank, peppered only with clinic visits and a few enjoyable homeschool activities.  Finally, we give in to this life.  Admit it is our life.  Admit we must pare down and pull back and focus inward.  Yet, I write, and sing the Gospel on the wings of the internet.  I pray that God opens doors while others are slamming shut.  That He heals us...if not our bodies, that the healing and building and breaking and loving of our souls keeps watering us deep so that we can face the trials of another weary tomorrow.

Please lift us up in prayer:

• Amelia's safety, especially protection of her breathing, during nocturnal seizures
• Successful treatment of her epilepsy, elimination of the seizures
• Wisdom for Gen's oncologist as he decides about scans/treatments for this fall (next appointment is October 5th)
• Comfort for our healthy kids as they face limitations that continue due to Amelia and Gen's illnesses
• Comfort for us as we go through some trials at our church