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!
Friday, February 29, 2008
Monday, February 18, 2008
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
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
Wednesday, February 13, 2008
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.
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
Monday, February 04, 2008
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
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
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