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
Tuesday, January 29, 2008
Monday, January 28, 2008
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
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.
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.
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