Catching my daughter's vision

Amy painted this, of the Jesus who has visited her thrice, for my office at work 

Everything is focused in, fine detail, microscopic, onto this image she portrayed to me, her yellow-haired Jesus with the blue clothes and the glowing feet; her angel with spiky orange hair and the wings that don't fly and whole face that smiles. I dream of it, down to the cross-hatch of the linen of those blue clothes, to the strands of that yellow hair, to the burnt-umber orange of the angel's coif. It passes through my prayers as I beg for no more seizures, beg peace for a nervous system taught and tripping. I try to focus on that image hard as I battle with her skinny little stubborn frame at every meal time, hours of battle for just a few bites. I show her a video of a child getting a feeding tube placed, the gagging, the vomiting, the red-faced crying and begging. I make her smell formula, which isn't even as nasty as tube-feeds. This is what you'll have to eat, I say, if you won't eat food. With the seizures come the texture aversions and the difficulty coordinating chewing and swallowing. Finally last night we give in and make milk-toast soaked in the broth from the pot roast, and spoon the gelatinous mixture into her mouth through her tears, and I am at the glowing feet of that Jesus deep inside myself, praying, beseeching, weeping without weeping with my face.

This is what you do to fight for a child. It comes up on you like a storm blown in sudden from the northeast. You are in the sunshine of the last rays of summer one minute, and the next all the old familiar sounds of the storm howl around you - the tears, the eyes that won't track, the bumping into walls, the pooping in the pants, the can't-swallow-anything. I call the neurologist and he isn't there and I think it will be impossible to go two more days like this even though we've gone months like this before. The nurse asks for her weight, and I walk into the bathroom and weigh her, all her clothes on, and find she is only 1 pound heavier than she was 9 months ago, and I am on my knees by the scale, thank goodness. How hard have we worked for that 1 pound. How helpless I feel at that moment as the nurse repeats back the weights to me, and asks me to check again. How can she have outgrown her dosage of medication if she hasn't grown? I ask. The nurse has no answer. Wait for the neurologist, she says. He'll have a plan. For just a few minutes on the phone, she is the angel, for she has heard the hard-edged grief/anger/fear in the voices of a million parents and she knows I don't ever want my child to seize again. She can't do anything more to stop the next seizure than I can, only just speak in that soothing voice, assure me there will be a PLAN.

So I focus. On the threads of the blue cloth. On the glow of the steadfast feet. On the broad shoulders that carry the load I cannot. Come, Lord Jesus, come...not just to her, to us. Carry us home.

Written on Lisa-Jo's prompt, "Focus" 

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

Moments passing

The one with the flaxen hair, running through the flaxen grass all wet with winter's melt, she tumbles through the false spring and has her first seizure since 2011. I remember another summer, when she seized dozens of times per day, and I thought to myself that I couldn't do this, couldn't sustain this energy level. I was begging at the Throne for strength. Strength that didn't seem to come.

Just like all seasons, it came to a close, as silently as a door closed quiet. It passed so softly into the night of memory that we didn't notice it going until months had passed, and seizures were few and far between. We had to think about it hard to remember the last one. And then she went three months, and then six, and now nine months between seizures. Now it feels like being suddenly bumped off your footing when she walks in and says she's pooped, and there is vomit on her lips, and we turn to each other in bed with knowing eyes and the question, who cleans up this time?

The spring air is clear, the light is a blue-white, and I am chasing shadows across the lawn, trying to catch muddy feet in my camera viewfinder on a 70 degree day in March. Feet, those little feet that make so much noise as they stomp and patter through the hardwood floors of the house. I remember another season, too...one when I slept in a pile of babies and wondered if I'd ever be able to turn onto my stomach in sleep again. Then the babies grew, and got bunkbeds in their own room, and still that constant interruption through the night, the pitter-patter across the dining room and the squeak of the door on the hinges as they plow through to Mama.

It used to be four children who would vie for a spot in the queen bed between us. All night, the constant interchanging, one child carried back to bed snoring so their sibling could claim the valuable real estate on the flannel sheets. I remember the bone-tired mornings, the many times getting up through the night, the begging Jesus for a nap. I didn't think I'd ever sleep through again.

But now I do. The eldest two never come anymore. They stay tucked in their own beds, oblivious to the younger two, who still make the pilgrimage through the dark to our room several times a week. But there are days in between - sometimes a whole week - when we sleep alone in whatever position we desire. And on those long stretches, I am reminded that this season will soon pass quietly like the seizures, and I will always be alone in bed. So I hug them tight when they come, plant myself uncomfortably but close, my heart comforted. Sometimes I even beg my eldest two to come cuddle in the morning since they no longer do at night.

Why does time fly by so, when you get to the meaty center of joy? The season you waited your whole life to experience has fleet little feet, and you can't hold on to the moments fast enough. Remember, young mothers, on those days with the flu, and the sleepless nights, and the constant neediness...it goes quickly. Don't forget to hold them tight and give praise for this momentary pleasure of being the center of someone else's universe.

Coming undone {Mayo Day 6}

Step 1. Remove dressing & netting around head.

Step 2. Soothe child with favorite thing (in this case: bottle).

Step 3. Remove tape, gauze, and electrodes from head using acetone (sting!).

Step 4. Understand why child has been screaming & itching head for last 48 hours.

Step 5. Finally: the awaited-for-a-whole-week bath.

Step 6. Try another bottle.

Step 6. How about some Benadryl for that itching?

Step 7. Go HOME!

Felt prayers {Mayo Day 5}

Suffice it to say she hasn't itched since the prayer comments started pouring in. Well, that's not entirely true: she has stated, a few times, in a very calm voice, "Mama, I am itchy. Can I have some medicine please?" TADA! Prayer at work, people!! Thank you to each and every one who dropped everything to pray for something as small as the comfort of one little kid today. She's more subdued than usual, pale and under the weather as her cough worsens every day. But she has not been screaming in pain! These pictures are from our evening play session a few minutes ago.

Now to him who is able to do far more abundantly than all that we ask or imagine, according to the power at work within us, to him be glory in the church and in Christ Jesus throughout all generations, forever and ever. (Ephesians 3:20-21)

A few videos of the last few days - tips on how to keep your kid happy in the hospital! Enjoy!

When you are helpless {Mayo Day 5}

The results from this hospital stay are so depressing on so many levels. Last night Amelia started reacting horribly to the glue used to attach the electrodes all over her scalp (about 30 of them). She screamed, thrashed, and begged me to remove them, all while shaking her hands in the air because she was obeying and not scratching at them. When I finally got her to sleep at 4 a.m., I vowed not to let them touch those electrodes again...just take whatever information they can get, without the usual morning process of gluing loose electrodes and filling them all with conducting gel again. At 11:30 a.m., I praised God because they hadn't come to do so yet, although they are usually here by 9 a.m....I assumed this meant the electrodes had by some mercy survived the night intact. So I allowed a nurse to give me a 20 minute break so I could shower. I heard her screaming above the water running and the fan blowing. Scrambled out of the shower and scrubbed dry with the harsh towels as quickly as I could, threw my clothes on and ran out.

They were gluing the electrodes, trying to massage her forehead where the skin is dented, red and irritated. She was screaming for mercy and begging for Mama. My heart broke like it hasn't since last November. I simply crumble when I am party to holding my child down so they can inflict pain on her...pain that seems futile to me. They've already shown that she's not having seizure activity during the day. I just got done speaking with the doctor (the famed epileptologist), who says we need to pursue other diagnoses to explain her balance, speech, and eye tracking issues during the day. SO WHY ARE WE GLUING THESE ELECTRODES BACK ON HER POOR SCALP, EXACTLY??!!

The nurse in me wants to tell them to quit. But the parent in me...they have her over a barrel. The only way they'll listen to me is if I'll sign Amy out for early discharge today. Otherwise I have to submit to every jot and tittle of this harebrained plan.

The news today is a mix of bad and worse. First, they haven't captured a grand mal at night, so they have no new information about where those seizures are coming from. All they've gotten is the same thing they've gotten on the routine EEG - epileptic spikes in the middle back of her brain. Second, the activity during the day isn't seizures, but is plainly visible to the neurologist and the nursing staff, all of whom agree it is not normal and needs further diagnosis. Which means instead of having a clearer diagnosis at the end of this trying 6 day hospital stay, we will actually have a muddier one: a child with epilepsy who also has something else that remains undiagnosed. In some ways, we have been plunged back into the pool of uncertainty we were in last March. Is it brain damage, a genetic condition, a metabolic disorder, a life-threatening neurologic illness? Very few things have actually been ruled out at this stage. After this hospital stay, we aren't exactly going to be running back for more, either. In some ways, just when we need to be pursuing this harder than ever, we are most exhausted and tired of the whole doctor/hospital rigamorale.

Be merciful unto me, O God: for man would swallow me up; 

he fighting daily oppresseth me.

What time I am afraid, I will trust in thee.

In God I will praise his word, in God I have put my trust; 

I will not fear what flesh can do unto me.

Thou tellest my wanderings: put thou my tears into thy bottle: 

are they not in thy book?

When I cry unto thee, then shall mine enemies turn back: 

this I know; for God is for me.

In God will I praise his word: in the LORD will I praise his word.

In God have I put my trust:

I will not be afraid what man can do unto me.

Thy vows are upon me, O God: I will render praises unto thee.

For thou hast delivered my soul from death: 

wilt not thou deliver my feet from falling, 

that I may walk before God in the light of the living?

~from Psalm 56~

Pray for me, friends. I am feeling helpless and alone. I can do little to comfort Amelia or keep her happy through the itching. I can't seem to talk sense into either doctors OR nurses. It takes over 2 hours just to get a dose of Benadryl because of their safety protocols and the nurse's unwillingness to override them. I was told everything from - "she's just throwing a tantrum" to "you're making her worse" last night.

Have you ever felt helpless as a parent? What do you do, in that moment when you are holding your child down so they can do to him or her exactly what you don't want to let them do? How do you advocate for your child? Do you simply advocate before almighty God, or have there been times when you stuck to your guns and defended your child from men...doctors, teachers, or others who thought they knew what was best for your child when it violated your own instincts?

When I am tired

When I am broken...

When I am lonely

When I’m surrounded

When I’m uncertain

Your love remains

When I am mourning

When I am waiting

Your love remains

~ Your Love Remains, Steele Croswhite

*Photos from several weeks ago...a bath floating in the arms of Grandma Debra after an afternoon of what we thought was partial seizures. This is what Amy is dreaming of right now. :-(

All together {Mayo Day 4}

Minnesota is in the dreary early winter stage. The snowflakes falling have been beautiful! Oddly enough, just 80 miles north, in the Twin Cities, they received a true blizzard, not just flurries - over 10" in some areas, I think?

The lines on Amy's little head are so lyrical with this little headdress.

Painting nails was a favorite activity for both Amy and Rosy!  Never before have I spent the time to do multiple coats of color, PLUS the glittery top coat! I am afraid I have falsely elevated their expectations and it will come back to haunt me some busy evening when I am bathing them...

Movie time!

Doing her evening "stretches" in bed this evening.

I think she's got a hockey goalie somewhere inside!

Playing computer games - Olivia's painting game was a hit!

(click on "Fun with Olivia")

Amy still hasn't had a grand mal seizure. The resident covering the epilepsy team this weekend is an adult physician, so she didn't have much information to share with us. I have a list of questions a mile long for the epileptologist (seizure doctor - who knew they had their own name??!!) tomorrow. I do know that Amy has been having almost constant epileptic "spikes" - abnormal brain waves - during sleep, but I don't know how these "spikes" are interpreted, what they mean practically for Amy, or how they might guide her treatment in the future. Tomorrow I will probably have more answers instead of just questions.

Aaron and I also decided that we needed to draw the line and put a deadline on discharge from the hospital, for practical reasons like childcare issues, as well as to protect Amelia, who is reacting to the glue they use to attach the electrodes, and is developing a worsening cough because of her relative inactivity in bed. We feel it is in her best interest to go home soon. We allowed the doctor to decrease her anti-seizure medications again today, but they will put her back on her full dose tomorrow at 10 a.m. That means that they can discontinue monitoring at 10 a.m. on Tuesday (24 hours later), and we will be discharged sometime Tuesday afternoon. The whole family is pretty excited to have a specific discharge time established! We learned today that they had planned on keeping her up to 14-18 days if they didn't catch a grand mal seizure at night! That seems virtually impossible with a 4 year old. They were planning on removing the electrodes, scrubbing her head, and putting all new electrodes on Tuesday. I don't think Amelia would handle that well, and I don't think it's a good idea for her health on all kinds of levels.

There is still time for her to have a grand mal seizure - which would greatly enhance the diagnostic value of this hospital stay! Please pray that she would have one while still being monitored, if that would be best for her. We don't know if it would be or not - I also found out today from a very helpful nurse that often this just gives them leverage to suggest surgery to remove part of the brain. Aaron and I are absolutely opposed to that idea in Amelia's case because we don't feel she is limited anywhere near enough by her seizures to risk that kind of invasive and forever life-altering treatment. So perhaps God is keeping Amelia from seizing so that we don't have to fight to keep her brain intact! We don't know. As usual, we are praying that His will be done, not ours.

We appreciate your calls, visits, prayers, and thoughts through this whole stay! Two more days feel somewhat like an eternity...yet I am so thankful to be seeing the light at the end of an arduous tunnel!

Videos of more hospital fun tomorrow...

And a give-away (there's a first time for everything) in a few days!

Getting a bit stir-crazy {Mayo Day 2}

Amy started getting a bit stir-crazy today on day 2 of being confined to bed. By this I mean she started doing things like hopping up and down all around her room, doing jumping jacks, and trying to jump on her hospital bed. Trust me, hospital beds do not "jump" well! She also triggered the seizure episode alert system at least a dozen times. Which is a bit irritating for everyone - especially the staff - as it brings about 5 nurses running full tilt down the hallway to save her life in the event of a bad seizure!

It wasn't until after midnight last night that I finally got her to sleep, after much cuddling, reading of books, singing of songs, drinking of milk, and attempting to bounce on the bed. Tonight, we read the incomparable "Olivia" by Ian Falconer...and giggled that "Olivia" could be called "Amelia" instead, as this little pig character is never tired, exhausts her mother, is pretty good at almost everything, loves to paint, dance, and sing loudly! I was thankful to have the help of an excellent speech pathologist and occupational therapist today, who brought many fun activities to help keep Amy busy in bed.

The evening hours tonight were long and difficult. Amy either asking or just climbing out of her bed, wires and $2,500 back-up of monitoring equipment and all! I felt abandoned and alone down here in Rochester with no visitors and a little sad that they haven't caught any "conclusive" seizure activity yet, which led to the depressing announcement at 3 p.m. today that we will be staying at least until Monday, possibly longer. Then I spiraled down further with guilt while reading a blog post by a new acquaintance who lost a child she joyfully parented with much more severe special needs than Amy's.

And then I got an e-mail from my mother that snapped me out of my funk and showed my selfish attitude for exactly what it was. That's the thing about guilt...it's usually a selfish emotion, too, because it keeps your attention focused on exactly the wrong thing...you! 

What a joy it is to have some undiluted time to savor, teach, and get deeply acquainted with a middle child tightly sandwiched between siblings. I am sure neither Amy nor I will ever forget these days, and the itchy head (for her) and the long hours trapped in a small hospital room (for me) will fade as time passes. What we will remember is sitting on a sheet on the floor, playing with her new alphabet matching game and learning her letters and letter sounds; reading a hundred books a day cuddled in bed; laughing hysterically while we sing Lady Antebellum at the top of our lungs, accompanied only by our maracas and the audible giggles from the nurses huddled outside the door. We will remember the food service lady she thrilled with an impromptu thank-you kiss and an invitation to come back and play dolls if she had time later; the hours spent finding new places to put her dolls to sleep and practicing dressing techniques on them.

God is hard at work, using that old spade of sorrow to dig a well for joy in my life...and hers. We have shared laughter and a new closeness already. These days are a gift to us both.

And yet...I pray that someday I will no longer go on "vacation" nor "re-connect with my children" in the hospital, for heaven's sake!!

Enjoy the video of us rocking out to Lady Antebellum earlier, before they told us to turn it down and we went acapella!

All the days of the oppressed are wretched, but the cheerful heart has a continual feast.

Proverbs 15:15

Evening in the hospital {Mayo Day 1}

 Joy of a visit from siblings in the hospital.

Playing with the vintage window panes in the old hospital wing.

Yeah for new toys!

$50 at the hospital gift shop = 20 minutes of peaceful play.

A single closet in the hospital room (free) = 1 hour of playing "bus" with glee!

If this eldest sweet girl doesn't become a nurse like mom & dad...

I'll be shocked.

She spent the whole visit watching over Amy's various wires and cords.

Making sure they don't get caught in the door of the closet...

...or stepped on by the crazy off-boarding bus passengers.

Can you really be sick if you're having this much fun?

And finally...they have the BEST therapy dog here. Ever. A Newfoundland.

Only problem: owner has to carry around a towel to wipe up the spit!