Long Walk, Long Journey

What a beautiful day for a walk! Today saw 50 degrees, blue skies and literally thousands and thousands of people walking on the National Mall for Epilepsy Awareness.

This picture is of Amanda at the finishing line, along with her new friend Julia. I'd met Julia's mom through an online forum, and was surprised to actually bump in to her and her family at breakfast this morning before we left the hotel. Julia is 7, and although very shy, seemed to grow pretty attached pretty quickly to Amanda. They walked much of the way together, and at the finish line, ran across together. Julia is something of a snapshot of Amanda's first 7 years, which was very interesting--especially to the moms who, much to Amanda's deep embarrassment, compared nearly every event of their lives, small and large, during the entire course of the walk.

Below is a short video (do NOT expect Steven Spielberg to show up here!) which gives you just a small glimpse of the vast numbers participating today. It's hard to see, but the line of walkers went in front of us all the way up the mall, and around the corner. We were somewhere in the middle of the pack, so the line of walkers was far behind us as well.

Among single and family walkers, there were groups where t-shirts with pictures pinned 'in memory of' various loved ones, as well as groups who were focused on bringing awareness and help to people who suffer from specific types of seizure disorders (Lennox Gastalt Syndrom, Myclonic Seizures, Infantile Spasms, etc.). But what was most amazing was the number of people who were out, walking, either as a person, or loved one of someone, with seizures.

The forums afterwards were a mixed bag. Mine was ok, but covered a lot of territory which was already pretty familiar to me. Towards the end, I slipped out and snuck into the back of the room where the 'Teen Challenges' forum was taking place. I hung out in the back, hoping Amanda wouldn't see me, and listened to some early-twenty somethings and late-teens sharing personally and candidly about dating, relationships, friendships, driving, school and the things that are of most importance to people who are around Amanda's age up to beginning college.

If I tell you there were a few gut-wrenching moments, I'd be grossly understating things. One girl in particular shared how she'd been in special-ed classes through all of school because of her seizures, and had spent her life feeling hurt by other kids comments, since she needed extra accommodations in some of her work. "I just hate it when people say I'm stupid!" she cried. At that moment, Amanda, who had not said a word during the entire conference, looked up from the shoe she'd been picking and yelled, "I know! Me too!" The other girl then burst into tears. Amanda moved over to her, and the leader of that portion of the meeting stopped to give the young lady a hug. There were several moms in the back of the room by that point, and we all fell apart.

It was interesting that not one other kid in the room cried....only the moms. I suspect it's because these kids have felt this often enough that it doesn't move them too extraordinarily to hear it from someone else.

After a few minutes, I pulled myself together and snuck back out, since the forum was almost over. I didn't want to be 'caught' eavesdropping, and wet-eyed to boot. I stood outside and waited. A few minutes later, Amanda strolled out. "How was it? What did you think?" I asked. She answered, in the true spirit of a 14 year old, "It was fine." (Insert sound of my hand mentally slapping my forehead here.)

Later, in passing, she told me that she was pretty surprised to learn that she's not the only one who goes through some of this stuff. Well, there you go--I guess that is as good as it gets. Fortunately, I got to see with my own eyes that it was a little more significant than 'fine' for her, and probably for all the other kids in the room, too.

Oh-I didn't mention yet that because of a last minute hitch in the registration process, we had to walk to another hotel to pick up our numbers, and then hike back and across over to the walk itself. By the time we got to the walk location, we had already walked several miles. We are both dealing with some seriously barkin' dogs tonight, and are too pooped to head out for dinner, which is fine because we probably couldn't squeeze our feet back into our shoes on a bet. We're exhausted, but in a pretty good way.

Blessings,
Megan

PS-Our neighbor Ashley, who underwent 12 hours of brain surgery yesterday for an aneurysm, was taken off the ventilator today and we are told she is doing pretty well. Thanks especially for your prayers for her!

You Are HERE

They say getting there is half the fun, right? Well judging by the sleeping kid (and it's only 4:30 in the afternoon), I'd say getting here was half the WORK!

We drove to the airport, boarded the plane, flew to Baltimore, took a shuttle to the train station, then ran to catch the train to the metro station and then took the metro station to Union Station, which is walking distance from our hotel. You don't have to be a kid with a couple physical issues to be worn out. We had a late lunch then wandered into the hotel, and I suspect we will not be leaving again tonight.

DC is amazing. I'm not sure whether I like best the fact that one can travel from one place to another without ever getting into a car, or the fact that there is a Starbucks (or some other shop requiring a 'barista') on every corner and at least at one shop between each corner. This is absolutely the most caffeinated city I've ever visited.

We sat on a corner and people-watched as we at our sandwiches this afternoon, and made up stories about people we saw. Afterwards, we went across the street to the most extreme Macy's either of us have ever seen.

Our hotel is just a couple blocks east of the White House and just north of the National Mall.

Tomorrow, we will get up and walk to the Mall. I will resist the temptation to walk west a bit to get to the south lawn of the White House, which is where the protesters usually hang out all day, mostly because I've been doing enough fussing at governments lately-though not at the national level. Besides, we are very much on a different mission this weekend.

OH--I bought a card for the camera, but wouldn't you know it, the plastic packaging is everything-proof. But the picture above is a still frame from a short video I took while we were at the cafe. More (and better) visuals tomorrow!

Blessings,
Megan & Amanda

And off we go.....

Well, tomorrow morning the alarm will go off way too early for me, and Amanda and I will be heading to DC. Now that we're packed and ready, with the 'to do' and 'to bring' lists checked off, it's starting to get even more exciting.

Unfortunately, my hubby and youngest daughter don't get to make the trip this time, but it should be an amazing experience for Amanda and me as we go on this adventure together.

And SO MANY folks are going with us. The prayers and support of tons of folks are allowing us to get there in the first place. I hope we can blog enough to help everyone who reads this get to experience a bit of it with us...and I hope to be able to get a link to some video time on here, if I can figure out how to make that happen.

The cherry blossoms are supposed to be blooming a little early this year, but even with out them, this is still my favorite place in the country to visit. If you think of us this weekend, check back. And thanks especially for helping us go. I suspect Amanda is in for a pretty amazing time, and am hoping she can make some real positive connections with some other folks her age while we re there.

Next stop, DC! Looking forward to speaking to you from the road!

Love & Blessings,
Megan

I've got this one.

This has been a crazy couple weeks.  I wish I had time to list all the stuff we've gotten to deal with as a family the last couple weeks but I don't think I have energy left in my fingers to type that much.  

I can sum it up by relating a quick story.  Two nights ago, my youngest daughter was sobbing her eyes out in my arms.  She'd been carrying a  load of worries and fears that are pretty staggering to an average 12 year old kid.  As I let her cry it out, I was reminded of something I heard Crawford Loritz say at a conference some years ago.  He was talking about the times when things are too big, too heavy, too overwhelming to bare.  You know the times--when you can't quite think beyond the moment you're in to even think of the moment coming next.

He talked about how when, at those times, if you listen closely, God is saying, "Move over.  I've got this one." 

Well, my daughter was struggling with things that are so far beyond her control, but being her mother's child, she was desperately trying to force them to be IN her control.  I got to spend a few minutes trying to explain to her what it meant to have a God with bigger, stronger shoulders than ours.  To a kid with a broken heart, it was probably too big of a lesson.  I still struggle with it at 43.  But finally, I just said to her, "Heather, it's ok.  I've got this one."  

I felt her whole body relax against me as she stopped crying.  In that quiet moment, my girl was able to let it go, and give it over.  Before the next moment came, when I knew I'd have to actually do something about it, I got to just 'be' in that perfect place where things were just as they should have been, where the tears stop and faith in something better surrounded us.

I wish I could practice my own lessons, but as they say, those who can, do, and those who can't consult.  Well, ok, maybe that's not exactly what they say.  But for a minute, I got to be a set of big shoulders to a girl who's heart was hurting.  Nope, I don't think I was playing God.  But it was a good place to be anyway, on this side for a change.

Blessings,

Megan

Wow!

Well, in just a few weeks, we have just about met our entire goal for the upcoming walk. THANK YOU THANK YOU THANK YOU to everyone who has sponsored Amanda and supported our team. We've had folks jumping in who she didn't ask, folks contributing way above and beyond what we imagined, and just all-around amazing support in general. We even had a matching gift that made a huge difference as well.

There's still time to participate. We don't mind if we go over our goal! You may want to check if the company you work for has a matching gift program. Those programs may allow you to double your dollar's investment if you contribute to the Epilepsy Foundation in Amanda's name.

You know, when you watch the news or read the paper, or even listen to people in line with you at the grocery store, there are so many things in our world which are just broken. But it amazes me how small that is compared to the goodness of most people. Of course, we hear about the stuff that's not so good because that's what sells.

Yet in just a couple weeks, a little group of people will be sending a kid to Washington DC with a fistful of donations for a cause that matters--and really matters to her. It's so easy to get caught up in the stuff that sticks, the stuff that sells, but what draws us together is the need for light in darkness, for goodness that we can believe in. How cool is it that together we get to go do something real, something valuable, and to teach a kid about goodness and standing up for something that matters?

Thanks again for walking with us. More soon.

Blessings,
Megan

The first step of the Walk--will you join us?

Last night, my wonderful hubby and I helped Amanda complete her website for the upcoming "National Walk for Epilepsy."

Two of the founding members of Team "SHAKE" (Spring Hill Advocacy for Kids with Epilepsy) will be attending, and we are starting to get excited! We are also starting to get sore as we prepare for the walk, but that's another story.

Here's an excerpt from Amanda's website:

"One afternoon, mom was digging through the internet and discovered this walk. I knew right away that I wanted to go, but mom needed some convincing. She hasn't had her walking shoes on for a while!

After some talking about it, we agreed that this shouldn't just be about one walk, but it should be about the walk that we've been making as a family towards understanding what epilepsy is, what it's not, and how we can make the journey a little easier for other people living with it.

SHAKE plans to be a resource to help those coping with fears and challenges as well as the isolation that comes with epilepsy--both for kids and their parents. We think that no one with epilepsy should ever feel like they need to make this journey alone. "

SO. This is where you come in. Will you help? We have just a month to reach a goal of $1,500. Every dollar counts in this walk. We need big gifts, small gifts, any gifts at all. All gifts are tax deductible, of course. If a tax deduction isn't important to you, (like say, if you just exercised a gazillion stock options or something ;-) ) perhaps you'd like to consider partnering with Amanda as she works to cover her personal out of pocket expenses for participating, which are nearly $400. She plans to try to pay the cost herself, but hopes to be able to raise the funds through family and loved ones, instead of trying to do $400 worth of babysitting, pet sitting and chores in a month.

To give, please click on the title at the top of this article.

Or, you can cut and paste
http://www.walkforepilepsy.org/goto/shake into your web browser.

If you prefer to do things the old fashioned way and/or don't want your name on the honor roll, send us a check made payable to "The Epilepsy Foundation," c/o Megan Hawkes, 1721 Shetland Lane, Spring Hill, TN 37174.

Whether you can help financially or not, please pray for us. I should have written that first I know, but maybe by ending with it, I'll leave it in your mind as the most important part of this walk. Please pray for Amanda's health between now and then, for safe travel and that she will make lasting connections with others. We are also praying that she will learn some amazing lessons through this walk, which will encompass just a few of the footsteps of the lifetime journey our family is on.


Blessings,
Megan, Bob, Amanda, Heather and Meghan

PS--if you want to find out more about the National Walk for Epilepsy, visit http://www.walkforepilepsy.org/. Click on 'Find a Team' to the left. Click 'Search for a team' and enter SHAKE. Remember, we only have a month to make our goal. Thanks for letting us share this with you!

The Birth of a Cause

Amanda is an advocate-in-training. Apparently she has inherited my desire for rabble-rousing and not being satisfied with the status quo.

Tonight, Amanda made the decision to attend the 2nd Anual Walk for Epilepsy on the National Mall in Washigton DC on March 29th.

In addition, we are working towards the creation of a local group, Spring Hill Advocacy for Kids with Epilepsy. Gotta love that acronysm for kids with seizures: SHAKE! Don't worry--it's approved by the charter member herself.

The initial goal of this local group will be to help raise awareness of this condition, and encourage folks to support her as she attends this national walk for Epilepsy. I suspect SHAKE will have much larger purpose as we move forward, though. More on SHAKE to come!

Did you know that Epilepsy is the third most-common neurological condition after Alzheimer's and strokes and affects more than three million Americans? Few people know that it can affect anyone, anywhere at any time. The Epilepsy Foundation, a national voluntary health organization established in 1968, works to ensure that people with seizures are able to participate in all life experiences; to improve how people with epilepsy are perceived, accepted and valued in society; and to promote research for a cure.

The Walk's motto is "Not another moment lost to sezures". Given the number of years we have spent dealing with the effects of this condition, we absolutely understand this creed. In the days and weeks ahead, we will begin raising money towards the SHAKE team's goal for the walk.

You will also be able to participate with us on our journey as we blog the event and report from the location. And yes, you will also be asked to help us as we seek to raise our financial goals.

Currently, we are seeking matching grants of any amounts to get the ball rolling. Would you please consider how you might be part of Amanda's walk? All donations will, of course, be tax-deductible.

Meanwhile, post your encouragement to Amanda (and her out-of-shape mom who will accompany her) as we prepare to walk on the National Mall to SHAKE up our community and help find a cure!

Blessings,
Megan

40,000-foot faith

A couple weeks ago, I went on a retreat with some co-workers. It was a few days before our admission to the hospital with Amanda, and I need to confess that I was, at that moment, feeling a little fragile.

I am one of those people who hates to cry in front of other people. I don't just dislike it, I absolutely hate it. I can cry at church or in my home (and frequently do). But when it comes to people I don't know well, I freak if I leak.

I'm not bothered by other people crying. I have a friend who cries frequently in our personal conversations, and I love her even more because she shows her heart so openly. She's one of those rare women who is beautiful when she cries. I have another friend who cries maybe a couple times a decade. I saw one of her big cries 10 years or so ago at a women's retreat. It was great. She yelled at me for not telling her in advance that she'd cry (in front of about 100 other people, which made it even better).

You may remember Hillary Clinton's big 'choke-up' on TV, where she gained 6 points in popularity the day after she teared-up over something. I had a pretty visceral reaction to that, and the next morning, when the local paper ran an article asking, "When is it ok for a woman to cry in public?" I responded by yelling at the paper over my coffee, "NEVER!"

Well the next week, off I went with our coworkers (some whom I knew well, and some hardly at all), and within the first hour of our time together, I cried. I still roll my eyes a little in disgust at myself when I think about it.

But the reason why I cried has hung with me and become a constant, nagging heart theme for this place of our journey.

Let me back up a bit. Chris, one of the guys at our meeting, shared an 'icebreaker' called Solarium, a deck of cards with random pictures on them. The pictures were of all kinds of various items, or vignettes of time and certain moments. One picture was a close-in picture of an eye, red with either worry or tears. Another was a time-lapsed picture of a man in a subway with the blurred figures of moving people moving around him. Still another was a guy's bald head with post-its stuck all over it. Each of the 40 cards were very random, and all were very interesting.

Chris asked each person to choose a picture that represented where God is meeting us. No other big directions-just 'pick one that speaks to you about where God is meeting you recently.' One of these cards jumped out at me above all the others. The picture was of a jet taking off. Nothing too profound, but it grabbed me pretty firmly.

I do a fair amount of traveling with my job, which is both good and bad. I like to travel, but I hate being away from family. I am pretty sure they miss me, and I miss them terribly. I ache when I'm away from Bob because being separated from him is like being separated from part of myself. I also worry about them and call home way too often.

I also kid myself into believing that I not only maintain some kind of control over my house by phone or internet when I travel (even though Bob does an incredible job of juggling all that's required). I think I'm able to do something about the things that are happening several states away in my absence.

But there's a special moment that happens when I travel, specifically when I fly, which is not well duplicated anywhere else. The moment the flight attendant announces that the doors have been closed and it's time to turn off all electronic equipment including cell phones, all the people and things that matter to me most are completely at God's mercy.

In that moment, I don't have the ability to call home, to check email, to send texts or instant messages instructing, fixing, sharing, reminding, coordinating.

For that hour and a half, I am completely without control over my family and from my worries on the ground. All the things at my home or in my office are completely without the fragile tether I believe I have effectively wound around us, which holds me to them and keeps all of us together. At that moment, I must let everything go whether I like it or not. I am completely, necessarily, surrendered to God's ability to take care of all those things.

Logically, I know God is so much better at handling those things than me. But I give him roughly two trips a month, 3 hours each time, to be competent, and to remind me that He can do just fine without my help.

Of course, every time I land, I grab the phone and call home to check. And of course, everyone is as fine as when I spoke to them last. So why does it still take me a trip to 40,000 feet to be able to let them go completely?

At those moments, where the cabin air smells like just-opened little packs of stale peanuts or other stale things I don't want to think about too much, God is actually, finally in charge. And I'm in complete, required and necessary surrender.

What amazes me most, is that with that surrender comes the benefit of complete and total peace. I can't fix it, I can't see it, I can't change it. God's got it.

I've had a number of folks call or email me about how Amanda is doing. She's the same as she was 6 months, or a year ago. She's the same, but I'm a little different. I'm a teenie bit wiser. I've figured out that God is not leading us out of the desert of ignorance of understanding what should happen next....which is our personal wilderness. I'm not being led into the land of milk, honey and perfect clarity of His immediate plans for me and what I should do next. I am, instead, being given enough manna for today, the knowlege that God is bigger than all of this, and that grace is always, amazingly, sufficient. The perfect rest that comes with surrender, and the peace that comes with letting go.

God wants me to have 40,000 foot faith-not just when the cabin doors are locked, but all the time.

Frankly, I hate this lesson. Most of the lessons that are hardest for us are the ones we dislike the most. At this point, I probably owe it to Him to learn this one well, and I owe it to myself to learn it pretty soon.

So if you ask me how she's doing, don't be too surprised if I don't cry when I tell you she's about the same. I'm actually ok with it-or getting to be ok with it. But ask me where God's meeting me, and you might get a somewhat damper response. Wherever I am, God is there, both with me and with them. Especially when I'm 40,000 feet. Maybe, when I've learned this well, I'll be able to find that 40,000 foot faith when the cabin doors are unlocked, too.

Blessings,

Megan

Not Over Yet

Well friends, it appears we are not quite done yet. Today, we had an appointment with another neurologist who is reviewing Amanda's issues regarding sleep apnea. He's part of the same group as her regular neurologist at Vanderbilt Hospital.

As we pulled into the parking garage, wouldn't you know it....the kiddo began to seize. Heather spotted it first, and we pulled into a handicapped spot (a sin I hate to commit) and ran her into the hospital. Heather was intensely level headed during the whole ordeal and showed great strength in the foxhole.

By the time we got to the 9th floor (we were further from the ER than the neuro floor, she was starting to come around. She stayed responsive to us the whole time and didn't lose consciousness, which was a good thing because I would not have enjoyed dragging her into the hospital by her feet. You never know what to expect next when this stuff starts to happen.

Anyway, we are clearly not done yet. I don't know what God is trying to show us, but at this point I'd be totally ok with him using a big fat magic marker on my forehead so I could read it in the mirror. We've put her on the secondary meds for three days and will just have to wait and see what happens from here. We do appreciate your prayers, though!!

Blessings,
The Hawkes Family

Well, we got home late this afternoon! It's good to be home and Amanda and I have both already crashed for a couple hours, each reveling in the comfort of our own beds.

We don't have answers exactly, but we are claiming something of a healing. Long story short is that the eeg's ran perfectly normal the entire time she was in there, which is something that's never happened before for her. Does it mean she could be well again until next week, next month or next year? Yup, pretty much any of those. But could she be well forever? The doctor claims it's unlikely, but it is a possibility.

So on one hand, we have no definitive answers--there is still definite scar tissue visible on the MRI's, so there is a likelihood that she will have seizures again at some point, and he has seen kids who have epilepsy have perfect eeg's. It's very interesting that in the past though, her eeg's, even when she was well controlled, were NEVER good. So this is new for her, and to me, it's significant.

But conventional medicine says we can't be 100% sure of anything because except for the scar tissue she's always had, there was just nothing to see--even when they stressed her body, she stayed stable. So we are claiming a victory, and moving on, and considering her healed at this moment, for this day. Mom will still worry--that's what Mom does well. Dad will remind me that each breath is a miracle and a blessing of it's own. That's what Dad does well. But for now, we will celebrate the peace and grace that this day brings and celebrate the wellness of 'now.'

My friends may be called on occasionally to remind me of that. :-) But for today, life goes on--just with a bit more thankfulness. For someone like me who likes things nice and tidy, with finite, clean beginnings and endings, I am certain that there are some God-shaped lessons for me in this. But as Amanda is fond of saying, "It's not all about you, Mom." So, for now we just thank Him and move on.

Thank you for praying us through this thing. I can't think that any of this looks this way for any other reason than because of the prayers you have tendered to Heaven's gate on our behalf. So thank you. I believe your prayers were heard, and effective. I'm still trying to understand all of it, but right here, I understand the peace that passes human understanding, and the grace that falls like rain. And I understand that I will never completely figure out our God.

Blessings,
Megan

Last night-new journey

Well, it looks like we head home tomorrow, unless something dramatic happens yet tonight. The doc thinks that we, at this time, aren't looking at surgery, which is a huge praise. But we don't have answers either. More tomorrow, but we are trying to understand what this is about, and what God is up to. Please pray that we understand what this new development is all about....

Blessings,
Megan

Mirrors

This morning, I remembered the faces of some of the moms I saw the morning we checked in. The moms--several of them who had been here a while--had looks on their faces similar to what I imagine soldiers faces might look like after having been on the battlefield for a while. There's just a sort of a 'no, I don't have any make up or hair products, nor do I care anymore' look. But it's more than that.

It's a look of someone who's been on duty for days, without a mental break or a cup of home-made coffee, or their routine, or little luxuries like a morning paper or maybe even clean underwear. The vacancy of the eyes, the unwillingness to make eye contact...they all contribute to the look of someone who has been on the front lines.

It occurred to me that this is a battle-against an enemy unseen, and often misunderstood, underestimated, pervasive, cunning and relentless. This enemy rests but never sleeps.

Now, I realize my position is not as dangerous as some of the front line parents who are battling every moment for the lives of their children. The little girls wearing pink caps so that you can know their gender, as the enemy has robbed them of hair....the children with vacant stares of their own, from small wagons or teenie wheelchairs--those are places where the enemy has battled and left irrevocable scars. I feel blessed and guilty at the same time, swapping stories at the family washing machines, or at the constant gathering at the coffee pot. I know some other moms might feel the same weird mix of blessings and guilt, when they compare their own situation to ours.

And this is not necessarily all a spiritual battle, though our ability to continue on is strengthened so much by our faith. There are so many moms I've met who are deeply, deeply ensconced in their faith.

This is a battle that includes faith, but also includes science, and even some art. The weapons are tenacity, employing the best strategists (doctors, neurologists, oncologists, etc.), and other arrows in the quiver, hugs, peaceful times, laughter, finding joy in the moments that matter. Laughter may not always be the best medicine, but it's a powerful weapon.

Some of us have been 'enlisted' in this army (all drafted, to be sure) for longer than others. Some have had longer tours in the front-lifetimes, even. Some of us have had frequent periods of shore leave, only to find ourselves back at the front, just when leave was starting to feel 'normal'. But looking in the mirror this morning I realized that the look I noticed on the faces of some of the moms who had obviously been in this thing for a while was looking back at me.

I don't mind being enlisted in this army. I'm equipped by those who pray for us, and I'm having a day where I feel ready for the battle. I may feel differently tonight when the lights go down and the entire hospital floor quiets, and I'm left to lie on the hard visitor's 'bed' in her room, listening to the occasional beeps and blips, and the thankfully infrequent code-calls, and best of all, my child's quiet breathing. That's usually when the enemy works the hardest on me though-through my own fears. That's when we move fully to the spiritual battlefield.

But for now, I watch my child reading some book from the 'pre-teen' section of Barnes and Nobles (something I would probably not have purchased for her, had I read more than just the outer jacket), and keep watch over my baby girl, ready to defend her with every cell of my being, knowing the worst, praying for the best. She's oblivious to the battle being waged in the heavens and on this hospital floor on her behalf.

I love her oblivion, her innocence. I pray that someday she will have children of her own and that she will never have to see what I saw when I looked in the mirror today.

Nope...nothing

Ok, no pic today because all we are doing is getting ickier in the hospital room. Poor Amanda has not had a bath since Thursday night. Fortunately, there is a shower for mom, but it still feels a bit like camping.

And besides that, NOTHING is happening. Her EEG has been super clean---cleaner than it should be for a kid with epilepsy who stayed up till 3 a.m. this morning. I'm ready for bed now, but the med change is messing with her metabolism and she is wide, wide, wide awake. Not me, though!

Anyway, they will be bringing up the stationary bike and have eliminated yet another dose of the meds. Tomorrow and Tuesday may be hairy. If I don't create an entry those days, you will know how to pray....or, we may just be sleeping. :-)

Blessings,
Megan

A new day, some good friends

Well, for those of you who are following along in our journey, we had some bright spots in our day today. We had a visitor from some friends--all of whom showed up at the same time. The guy who looks a little like John the Baptist in the picture here is our worship/youth minister, Tom. He played Guitar Hero with Amanda and may actually prove to be a formidable opponent....one day (maybe). And yes, the two lovely gals in the front are indeed twins. Their mom, Cydney, was next to me. That's Bob next to Tom the Baptist (well, non-denominational, actually) and Heather at the foot of the bed.



With all the visitors, I definitely was able to get over my 'personal bubble' as Amanda calls it, or need for my own space. This room felt for a while like the Utube video of all the people in the wave pool in Japan. Google it.



The praise request today is that the doc said she could still play it (but for limited periods of time) and it came in very handy in keeping her distracted while they inserted her hep lock. She has notoriously bad veins, so distraction was wonderful. It helped also that all these folks were in the room when the I.V. tech showed up. We feel very loved and supported.



And note to our friend JR: ask your kids what Guitar Hero is. They will know!!



Unfortunately, the doc said her eeg readings of the last 24 hours were absolutely beautiful--which is great if you're not on a seizure hunt. So tonight, we reduced another chunk of her meds and will reduce more tomorrow. She is holding up well, but tired, which is good. She started on book #2 a while ago. At this rate, we may have not brought enough of them!

This picture is of the view from our window, which we expect to see for the next few (?) days. The red-roofed building is Bob's favorite pizza place in the world (except Goodfellas in Orlando). It's called 'Perfect Pizza,' and he dines there often enough during the work week that the counter guys don't bother asking him what he wants anymore. But now, the rest of us get to 'enjoy' it...and have had two doses of it already. I suspect there will be more brought in soon. Ugh. But the girls are always happy when Daddy does dinner.

We have received more cards, calls, gifts, emails and love than we possibly imagined. I am having a hard time remembering to call and email everyone back, so now I need to hope for grace too. But so far, we feel firmly carried by your love, support and prayers, and are resting in the shadow of the Almighty. Tomorrow may be a busy day, but we will wait for tomorrow to bring itself here with it's own worries.

Oh-before he left, Tom the Baptist (non-denominational, actually) prayed with us and prayed for Amanda to have seizures. It felt weird hearing that from someone else. But I guess that 'soon' is how we are praying now. Thanks for joining us.

Blessings,

Megan

All Settled In

Well, we're here and settled in. This is a great hospital, as far as hospitals go. It's a teaching hospital so you get a new resident and his team at each shift change, etc. But everyone here is very kind and helpful.

Being here, especially in the main waiting areas and reception, really makes me certain that I am a great big baby. Seeing other kids being checked in with pink caps covering heads made bare from chemo, and other kids who are wheelchair-bound makes me feel pretty ashamed for my own fears. She is safer here then she's been in any environment for years, and the care team here has all the stuff they need handy. And even if doctors blink, God doesn't.

The only time I've seen the kiddo anxious was on the elevator up to the room. She had that 'wish I could bolt and run' look for a few minutes, but once we got in and she got a book in her hands, all was right with the world.

Amanda's had her first round of eeg's this evening, but she's wired up to a continuous 24 hour system, and the room has multiple cameras and microphones, which makes us feel weird. The lack of privacy is a bit unnerving.

They used a really strong smelling epoxy-resin type stuff to cement the leads to her scalp, but she took it all in stride and has been pretty comfortable, either with that book or Guitar Hero on her lap most of the time. Bob and Heather were in this evening for a while and Amanda whooped him round after round, as usual. I can't imagine what those eeg's look like when she's playing that thing!

Tonight and tomorrow should be fairly laid back in terms of trying to induce seizure activity. If nothing happens on it's own, they will start pushing her a little harder on Sunday and Monday. We have been told they may do some sleep deprivation stuff, some stress test type things (stationary bikes) and some more strobe lights.

Just now we had our first crisis--the nurse working tonight said we have to limit electronic interaction. She may have to give up the Guitar Hero!! Oh man. Well, that's something else to pray about I guess. :-)

Time to get ready for bed....thanks for reading!

Megan

Here we go....

Tonight is our last night at home for a few nights, and we don't feel like packing, watching tv or doing anything besides sitting around eating Extreme Moosetracks, which Dad just went to Publix to buy.

We are headed out tomorrow morning for a 10 a.m. admission at the EMU. I'd like to say I'm still feeling lots of peace, but truthfully I'm a bit more anxious than I have been so far this week. Amanda is feeling pretty good, and already building her book list for dad to bring. Grandma offered to send a book up, so Amanda is assuming that she will be enjoying lots and lots of luxury reading time over the next few days. Part of me hopes that is true, but I'm told that the sooner she seizes, the sooner we get to go home, get answers, get her back on meds, etc. It is so weird wanting her to have a seizure after 13 years of trying to keep her well.

Here's a pic of her in the pool--it's not real recent but it's one I like a lot.

Well, I'm reminded now and then to be ok asking for prayers. So, I'm asking for your prayers--not for me (though I won't turn them down) but for her. Please pray specifically for Dr. Ess, her neurologist. Please also pray for a short seizure, and for her heart and brain's safety. Pray for them to get all the information they need, and to be able to read it well in order to help us all make a good decision about what's next. Pray however you like--we'll take 'em all.

Thanks friends...time to go have my Moosetracks.

Megan

Counting down...

Well, Amanda's still doing great. She has been on the reduced dosage of medication since Friday and not even a blip, so we are extremely thankful.

Yesterday, we had her IEP meeting at the school. This is where we determine what special accommodations she will need in the upcoming year. She has had an IEP every year since she entered the school system and at times has had physical therapy, speech therapy, occupational therapy, special assignments, preferential seating, daily pullouts, daily organizational assistance, extra time given for tests and assignments, and more.

This past year, she's only had occasional time of out of the classroom and taken tests in a quiet room instead of the main room. She's managed to maintain honor roll grades all year this year. We are all very excited for her.

However, the best part of yesterday was when her special ed teacher told all of us that she is, "On track for a four year college, independent living and self-selected community involvement." Hearing that she will be able to maintain the level of independence that she desires was just like grace raining down on us. What a huge blessing.

Anyway, I will continue to keep you posted about what's happening as we prepare for our stay in the Epilepsy Monitoring Unit (EMU) this weekend. We now are at 2 days till our stay and praying for a quiet time before she enters and a quick stay while we are there.

Thanks for keeping us in your prayers!

Megan

Safe In the Storm

You know how adversity strengthens your faith?

Last summer, we were on a cruise ship. We got out to sea and about halfway through the 2nd day, we had the most incredible storm. The lightning was flashing--multiple bolts per second. The visibility as the heavens opened and rain poured down was nearly nothing, and the waves were pretty rough.

That day, we watched the storm from our stateroom. Now, I've seen storms off the coast from the safety of a hotel room. When those electrical storms hit the land, they're tend to lose a little of their ferocity. There is an intensity that takes place over water that is more amazing, more awe-striking, more incredible than anything on this planet you can imagine. It's almost primeval.

So we're on this boat, we are idling because of zero visibility, and we're floating with the big waves. The captain is trying to keep us from being tossed about too much but it's pretty rough just the same. Huge bolts of lightning keep striking all around us. They'd strike the water around us in every direction, two, three, four strikes at a time. The thunder was simultaneous, and it was continuous. In the midst of it, the foghorn continued to blow, adding to the overall surreal nature of the setting.

The kids were scared to death, but Bob and I just watched in awe. It was actually the best moment of our entire trip for me, because in it, I got a glimpse of God's incredible power. Later, I thought about Jesus waking up on a little boat in the midst of a storm like that, and finding his panicked disciples frantically bailing and trying to stay afloat. They were probably scared too, and likely were doing everything they could to fight the storm and save their lives, according to their own expectations of what should happen.

Well, the thing about storms is that they always pass. After a while, this one did too. Almost immediately, the sun came out, the sea flattened, and everything was calm again. Storms always pass. In our case, the storm lasted an hour, and then on it's own, it just went away. In the case of the other storm I mentioned before, Jesus just woke up and said, "Peace, be still."

So, I guess we are dealing with this knowing that God can tell the storm, "Peace, be still," whenever He is going to do it....and He always does, because the storm always passes. I'd be ok if He did that right now, but I don't have a lot of say in the matter so I pretty much have to sit here and wait and watch. I am so tempted to just bail like crazy and try to make it happen my way, but I know I'm supposed to be still and wait for this storm to pass.

One thing about storms though, is that there will always be another. Maybe each one we ride out will help us understand even better what to do next time...what to expect, when to bail, when to pull in the sails, when to just cry out to God to calm the waves. I wish I knew well enough when to figure out which to do, but sometimes we're not supposed to 'do'.... we're just supposed to 'be'.

I think right now, I'm just suppoed to 'be,' as in 'be still.' Sometimes the waves aren't around us, but in us. Sometimes our hearts are waiting for Jesus to come and say 'be still'. It's not the waves, it's our fear of the waves.

I believe she's going to be ok. I'm claiming a lot of promises right now, but I'm especially claiming His words and trying to remember to claim His peace. I need a lot of reminding, but I know the storm will eventually pass. It always does.

Amanda Update #1

Hi friends,
Well, tomorrow, Friday January 18th, we start messing with Amanda's medications in preparation for her testing in the seizure lab at Vanderbilt Hospital. The upside to this is that finally, after 12 years of what feels a bit like wandering in the wilderness waiting for answers, we may finally be closer.

Right now, I'm sitting in an airport waiting for a flight that is hopelessly delayed, thinking it's as good a time as any to start chronicling our journey. I suspect at this point that the testing will lead to brain surgery, though Bob is reminding me to take one step at a time. I wish I could, but of course, my thoughts always lead to the next place, and I can't help but wonder where that place will be.

Today, some of my team-mates at work laid hands on me and prayed for Amanda and our family. It was a profound experience. I am so lifted by their prayers, and over and over again, I am hearing from others who are reminding me that they are praying for us. I know that if God created Amanda, he can control the details involved in her body and her brain.

I've met a bunch of new friends on an epilepsy e-board. I have not participated in one of those for years, but now that things are getting pretty heavy-duty, I'm experiencing a desire to connect with other folks who have been through the same thing we are going through now. Many, many of the folks are very encouraging.

Yesterday, Amanda had a seizure at school--and this is before we removed the med that has been giving her fairly decent control. The next week, prior to her admission into the hospital, will be very, very interesting. Hope you continue to watch here and read her updates. And we covet your prayers!