In the 3 extra years

Life, when it is going smoothly, is often a quiet thing. Illness slipped in quietly, too - insidious, 3 years ago. One day, Amelia was just Amelia. Slowly over the course of two weeks, she slept more and more each day, until she was never awake, and we were plunged into a hospital environment talking about a coma and a brain infection and a 50/50 chance that she would ever wake up again (see "Amelia's Illness" on the top menu above for more info on all Amelia has conquered to be here thriving today).

Life with Amelia today is anything but quiet. From her husky voice that is often at shouting pitch to her body always in motion, she is bundle of energy that never shuts off. Her body is loud and bold and intrepid. She never does anything in the expected fashion. So too was her 6th birthday. She wanted to go to a water park, where she conquered all the "big kid" slides. She wanted her annual "Celebration of Life" instead of a birthday party. Usually that means a sing-along by the campfire, but this year it was bone dry, chill-you-to-the-core cold, and blustering windy.

And so, instead of quiet around the crackling fire in the dark, we had 15 people filling our house to the brim with laughter and sing-alongs, dancing, a magic show thanks to Katy, parlor tricks, mountains of gift wrap, and two giant French Silk pies - the only dessert our sugar-phobic newly minted 6 year old will eat.

We had horned beasts and hugs.

Tears and lots of stories told from those awful memories of such a different October in 2009.

We had a houseful of yellow and owls everywhere.

We had grandparents reading cards, a 6 year old sucking her Nuksy, and an almost nephew filling his mama's lap inside her womb.

We had family of all kinds.

Our cup runneth over with the love of it all.

That she can balance on a skateboard.

That she can teach her little brother and has learned - again - how to share with him.

It was truly a Celebration of Life. Three unexpected years that we've kept this treasure here on earth. We never knew how to celebrate a milestone until Amelia was regaining lost ones. We never knew how to celebrate a life until it was given back to us. We never knew how to roll with the punches until we were punched and punched again. We never understood the depths of the unconditional love you have for these little people until it was stretched thin by the demands of illness and it's lingering effects. We never knew how to switch ourselves from survival mode into thriver mode. We never knew how to appreciate the million little "goods" that are sandwiched between the bad, however big and all-encompassing the bad may seem. It is true that no trial goes unwasted, no opportunity is lost. That He grows us faster and stronger in the rainstorms of life than in the ease of the dry summer warmth. 

We may long for the easy path, but it is in the hills and valleys of life's forests that we find the beauty of the path Christ trod laid out before us.

The heart at peace gives life to the body. (Proverbs 14:30)

Part of Fried Okra and Joy in This Journey's Monday blog hop on Parenting 

**I apologize for my long silence on the blog. The end of September and beginning of October, I am literally lecturing or teaching EVERY class meeting of my 3 team-taught courses, so I am working, eating, and sleeping Powerpoints, grading, and prepping assignments. Sometimes I have 4 separate lectures to prepare for in one single day. Overwhelming? Yes! BUT, this teaching thing has turned my inner light on. God made me for this. I love it. Hands down, I KNOW He designed me to do this. Pray that my contract gets extended another year this spring!!! And give me two weeks, and I'll be back to blogging as normal (I hope!!)

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.

Mayo Marathon

On the "day after" Mayo Clinic, I always take a stroll through some visual reminders of how far Amelia has come since October, 2009. The girl who couldn't sit, stand, walk, or see on day 1 in the hospital is flipping somersaults at a family gathering and giving us her big toothy grins, talking a mile a minute with the cutest lisp ever, and shocking the entire medical world with her nearly constant progress in regaining skills.

To God be the glory.

Yesterday was long and hard. It was supposed to be two quite simple appointments in the ear/nose/throat (ENT) department to examine a scarred area of Amy's throat, to see if there was any active infection. Instead, it turned into what we in this area of the country refer to as the "Mayo Marathon". Once you are there, they assume you have no plans for the next 5 days and randomly schedule appointments without notifying you until you check in at the desk. It is an interesting way of doing things on a good day, and downright frustrating on a busy one. We arrived at 10:15 to find that Amy had labs scheduled after her ENT appointments. No big deal. We were quickly called back for the ENT exam, and the resident examined Amelia and took her health history, then quickly scuttled off to find his superiors. The doctor took one look at Amy's missing tooth (it never grew in), her ear canals and her throat, and kindly and calmly asked us if we could perhaps come back after her hearing test and lunch to see another, more experienced doctor. I replied that we could.

The bright note in the day: Amy loved the hearing test and did so well the doctor kept testing her hearing well outside of the normal frequency ranges for her age, and found that she has better hearing than 99% of children her age. The testing room was set up with a bright young assistant who played "flying frogs" with Amelia the whole time. Every time she heard one of the sounds, she was allowed to fling a rubber frog across the room using a sand shovel. She adored the test and wants to go back next week to do it again (the doctor assures us she won't have to have her hearing checked again until she is very, very old and wrinkled).

We had a lovely - albeit somewhat stressful - lunch with the four kids at a nice restaurant a few blocks from the hospital. Another highlight of the long day: conversing with Ali over bleu cheese fondue and lavosh pizza. The four kids kept the waiters hopping (they were obviously not used to people under the legal drinking age) but managed to avoid making any large-scale messes or scenes, for which I was thankful.

Back to the ENT check-in desk. They informed me there that Amy's neurologist was fitting her in for a consultation as soon as I could get up to his office, and to come back to ENT when I was through with labs and the visit with the neurologist. So we hopped up a few floors. When we were called back to the exam room, we walked in to find the doctor waiting for us (if you are familiar with clinics and hospitals, especially big important ones, you know this never happens. You always have to wait for the doctor, not vice versa).

He sat me down and didn't want to examine Amelia. He had just been part of a conference call regarding all of her symptoms with several doctors in other departments. He listed a few:

• ear, nose and throat oddities noted by the ENT
• the missing tooth that never emerged
• Amy's repeated infections, including meningitis in Feb. '09 and encephalitis in Oct. '09
• her odd reaction to both gas and I.V. anesthesia but not sedatives (versed and propofol)
• abnormal lab values for calcium, potassium, and sodium since a young age
• repeated sinus infections as an infant
• muscle tenseness or rigidity
• balance problems
• eye tracking issues
• resistance to treatment for seizures
• unusual EEG patterns during seizures
• unusual response to some medications (Benadryl, Valium, and Versed, to name a few)

He asked for permission to test Amelia's DNA for several related syndromes that could explain most - if not all - of Amy's symptoms. I had to fill out a large stack of paperwork giving permission for this testing. I admit I have an weird stress response to this, as I knew so many children with various syndromes that eventually died. I don't want to think about syndromes in the context of my own child. It crosses barriers long ago erected in my brain and challenges my beliefs about the world. (Wouldn't we all rather believe in a God of pure mercy and ignore all the other traits that might lead to our suffering?)

After she got the DNA tests taken (whole blood samples, nice that it wasn't painful, just a regular lab draw), we headed back down to ENT. By this time it was 2 p.m. and I was pretty sure I would be late for the class I was supposed to be attending at 6 p.m. (Rochester is 3 hours away on a good day with no pee stops.) Amy was exhausted, with no nap, and I was just dazed.

We waited until 3:30 to be called back. A whole team of doctors had assembled: two ENTs, a speech pathologist, and a neurologist. All to watch while the "more experienced" ENT did a laryngoscopy on Amelia. (notice that, in this video, they edited out the part where this kid was gagging and screaming and probably puking on his mom.)  The laryngoscopy went relatively well, although I did get puked on and scored an awesome neon yellow t-shirt with a diagram of the inner ear plastered right across the chest. I had some laughs picturing people squinting, staring, and leaning in for a closer look at the tiny text. Needless to say, Aaron's taking the t-shirt off my hands.

The results of that test were given after the doctors went out to consult with each other for a bit. The awesome ENT came back in to share the results. The good news is there is no sign of infection in her throat, and the thickening and growths on her vocal cords have resolved now that she has been off asthma meds for a year. Part of Amelia's soft palate is not functioning correctly, which is what is causing her difficulty swallowing and also her speech issues (hyper-nasality and trouble saying 12 different essential sounds of the English language). She probably feels a lot like me - I have vocal cord paresis, which causes me to "breathe in" my food sometimes, and also causes a numb sensation in my throat this is disconcerting. Sometimes I simply feel like I can't "figure out" how to move liquid down my throat anymore and I have to spit it out. Amy does the same thing. Only her problem is up higher, in the back of her throat and lower part of her nasal passages. Surgery is the recommended treatment, but because of our hesitancy as parents coupled with the question of a syndrome that may make surgery a poor option for Amy, we are going to try intensive speech therapy for a 6 month period to see if Amy can learn to compensate for the problem. She will be receiving speech therapy 3 times a week. The other abnormalities noted are not fixable, just part of how this little girl is made. The hoarseness in Amelia's voice is a neurological issue that will hopefully resolve as time goes on. For now, we have a tiny little Fran Drescher impersonator with a Bostonian accent!

For now, I'm concentrating on what she can do. I may join the ranks of special needs moms (I love that term, which communicates the very real truth that it is I THAT NEEDS HELP! My kid is doing fine, thank you very much) everywhere who find a way to see the good through the opacity of the bad. For now, she skips. Hops. Leaps. Somersaults. Belly laughs. Delights me with her speech abnormalities.

Who could ask for more than that?

There must be more than this

oh breath of God come breath within

There must be more than this

Spirit of God we wait for you

Fill us anew we pray

Lord have your way with us

Come like a rushing wind

Fill us with power from on high

Now set the captives free

leave us abandoned to your praise

~Consuming Fire, Tim Hughes~

Weekends are for wondering: an update on cancer & Amy's seizures

amy's eyelashes

I remember deciding to name her after my dear friend. And my favorite great-aunt. Hard-working peace. That's what Amelia Irene means. I had no idea then how God would bring her name to fruition. She has been my hard-working peace, the peace that is striven for and won only with battle scars and broken hearts.

After a break from grand mal seizures during the day since August - unprecedented, freeing, believing, hopeful season! - and no nocturnal (during sleep) seizures since late October, Amy's neurologist decided to try weaning her off one of her anti-seizure medications (Depakote). Her epilepsy monitoring in the hospital at Mayo in October had shown very little seizure activity (only during sleep) and what was seen wasn't grand mal, so it seemed like the appropriate move. She had gone down by three pills per day by mid-January. We started noticing more partial seizure activity and some behavior oddities we hadn't seen since summer of 2010. On January 14, she had her first grand mal seizure in the day since August. And again the next day, and the next. Then she started having them at bedtime again. We immediately went up (even though we couldn't get ahold of the neurologist by phone over the weekend) on her Depakote. But she kept seizing.

On Thursday the 20th, she had her closest brush with death since last July, when she had a seizure that lasted 9 minutes and she choked on her vomit. She has been a pacifier and bottle addict, and the neurologist actually thinks the constant sucking might be a way of coping with seizure activity in her brain. It is really hard to see your 4 1/2 year old with a Nuk constantly, treat the chapped chin everyday, and weather the withering glances of strangers when she begs for it in public. But, it seems to help. So there is no way I am taking it away at this time. She often asks for a Nuk when she is stuck in a "partial" (see description here). She did so on the 20th, and I gave her one, an old latex one she's had from late infancy and recently rediscovered (I was keeping it for sentimental value, because it was her favorite as a baby and the familiar pink star just says "baby Amy" to me when I look at it). A few seconds later, she collapsed in a grand mal seizure, and I couldn't get the Nuk out of her mouth. She vomited out around the Nuk, and then made some weird sounds I hadn't heard before, so I used the handle of a butter knife to pry open her jaws and remove the Nuk. Only there was no nipple on it anymore. Her mouth stayed clamped shut, although she was obviously choking, so I levered further until I could get my fingers in. I got her mouth open enough to see the Nuk nipple floating in the back of her throat with some vomit, and hooked it out with my other hand.

In a few seconds, I went from, "Here we go, another seizure" to complete and total mom and nurse panic mode. What do I do when there is no handy blue code button on the wall to summon help with? When I have no readily available suction, oxygen, or cut-down tray to do an emergency tracheostomy? I had brief, panic-ridden visions of the EMT who taught us how to give someone an alternative airway through the cartilage in their neck using either a ball point pen or an IV start kit. I was able to get the nipple out, and she was fine. But it was seriously the most traumatic moments of my life-as-mom, which is why I haven't written about it until today.

After a frantic 2 days without allowing any Nuks (or bottles, unsupervised), I did some frantic online research.  At the recommendation of some parents whose adult children have Down syndrome and still have lots of oral stimulation needs, I purchased some old fashioned, one-piece, natural rubber pacifiers from Amazon that are reportedly more bite resistant. And boy-cotted any pacifier that has any visible damage to the nipple. She loves them, even more than her old Nuks, and they have the bonus of having a round handle that is very thick and okay for her to chew on when she feels like chewing instead of sucking.

she still loves to pinch the web of my hand

I realize if you don't have a child with special needs or brain development issues, this probably sounds crazy to you. And perhaps you are thinking I should exert a little more control and take away the Nuks and stop the chewing on things that aren't meant to be chewed on. All I can say is, I wouldn't have "gotten" it either, a year and a half ago. But I do now. This is something that is a deep need for her, and seems to help her maintain normal function at other times throughout the day. Without the chewing and sucking release, she is reduced to a sobbing baby-child who simply cannot focus on anything beyond the need that is not being met.

So, the long and short of it: if your child has epilepsy and uses Nuks, think about converting to the bite-resistant kind. And Amy is doing fine now. Only one more seizure since we got her meds back up to full strength.

new skin :: old skin. all the same. suffering skin.

People have also been asking frequently about the results of my annual radioactive iodine-131 whole body scan. I did write about it, but apparently not flamboyantly enough. Usually it's in the context of massive cheering because everything is negative or massive soul-searching because it is positive and I still have cancer and I feel like maybe this year I'll die from it. BUT. This year it was kind of neither. My scan was "clean" (no obvious metastatic cancer) but my labs were still positive (down from 3.5 last year to 0.9 this year) for cancer. At first, I assumed this meant my diet was working, and felt depressed because that means I have to stay on the strict no sugar/no starch/no over-the-counter medications (like ibuprofen, which sometimes I think is nectar from God in pill form).

I got a little more news when I visited my regular family doctor this week for help with my arthritis, which is not clearing up (I am on a course of strong anti-inflammatory medication to treat it, then steroids if that doesn't help). It appears that the injections I received to prepare my body for the radioactive scan did not work this year. My blood level was supposed to climb to at least 75 and only got to 11. In short, this means that my cancer was still suppressed when my blood was checked for cancer and I had the whole body scan. Which means that neither test is conclusive. And the fact that cancer was still present in my blood although the cancer was suppressed at the time is concerning. My doctor was going to speak to my endocrine oncologist about it and told me I might think about having the test repeated in June or July. I won't know for sure until March 14, when I see my endo-oncologist next. But that was extremely bad news. Not extremely bad in the sense that I'm dying or anything. Just extremely bad in the sense that the trial goes on...and on...and on. I won't be declared "cancer free" until 2013 or 2014, assuming my treatment and diet continues to suppress any more cancer growth. I will be "in remission" until 2018 or 2019, five years after I am "cancer free". Somehow that 7 or 8 year weight is just...oppressive. I can't even imagine my life - my kids will be 15, 13, 12 and 10. Weird. It is so strange to think of living with this for that long.

And so I plunge again into the cold water of disappointment. This season of "wait" lingers on. I buy books on emotional recovery and finding a way to praise and letting go of the life you think you should be living. I peak in on freedom on the blogs of this Christian and that who has found a place where doubting/trusting co-exist, or where loving and longing don't quite make the heart break.

And I sigh and just keep doing it: read, study, flail, pray, praise, repeat. The personal liturgy. Even in this. Even in this. (2018 isn't that long to wait, in view of eternity, right?)

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. :-(