12.21.2014

The Good in the Bad and the Ugly of Epilepsy {Three Years In}, Part 1





"Bayley passed out at the Acteen sleepover at church this morning.   They think she may have had a seizure.  They've called an ambulance.  We're headed there now.  Please pray."

I typed those words three years ago this morning, having no idea at the time that we had just been thrust into another radically unexpected life change.

It took over three months, but we finally got a diagnosis: Juvenile Myoclonic Epilepsy. We learned that this type of epilepsy typically manifests during the early teen years, and that she would have to be on seizure meds for the rest of her life.

We learned about the different types of seizures, particularly tonic-clonic (also known as grand mal), absence also known as petit mal), and myoclonic (involuntary arm/leg jerk) seizures, as these are the types common to JME.

We learned that the major seizure trigger for most people with JME is sleep deprivation. Another major trigger is flashing lights. Over the last three years we've learned that in Bay's case, the most important things other than taking her meds regularly are giving her a long time to wake up in the morning and avoiding sleepovers. Adequate sleep is a must, and early mornings don't work well. And while emergency lights and Christmas lights haven't been the major triggers we expected them to be, flickering florescent bulbs and big screens at the movie theater present serious problems.

I jokingly said the other day that one of the biggest lessons I've learned during our epilepsy journey has been how often lightbulbs flicker in public places, and how long it can take for them to be replaced! We've had to avoid the shower area at the gym and one whole side of our  most-used grocery store for weeks at a time due to bad florescent bulbs.

We've learned that sleep-deprived EEGs are really just a medically approved form of torture.

Btw...around here, EEGs are known as "Eggs". Peter coined that term back around Bay's first or second EEG to try to help her laugh about it, and the term stuck.

Speaking of EEGs, Peter would say one of the most important things we learned during Bay's very first EEG was that Bay does indeed have a brain. He seemed quite thankful to have his mind put at ease on that subject. Helpful brother, that one! ;-) Actually, he has been extremely helpful by keeping her laughing throughout the tougher parts of this journey.

We've learned much more through this epilepsy journey, some of which I'll share in tomorrow's post. For now, if you'd like to read more, check out He Directs the Hearts of Kings (And Insurance Companies!) and Another Unexpected Path. I'll share more about this in tomorrow's post, but the most important thing we've learned (again!) through the unexpected path of epilepsy in our family has been God's overwhelming faithfulness and care for the smallest details of our lives.

And we know that all things work together for good to them that love God, to them who are the called according to His purpose. ~Romans 8:28

How have you seen the truth of Romans 8:28 worked out in your life? I'd love to hear about it in the comments!




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11.17.2014

Wonders Too Many To Declare! {World Prematurity Day}


November 17 is World Prematurity Day. It always sneaks up on me, and this year was no exception. However, I can't let the day go by without a post about our preemie, and our thankfulness for God's healing power and faithfulness in her life and in our family.

This year as I've thought about our "preemie story", it's brought great encouragement and comfort. We're going through struggles of various kinds right now, and so many around us are going through major trials that seem so overwhelming.  I'm thankful for the reminders of God's power, sovereignty, and faithfulness as I pray for all of those needs. Our God is a God of miracles. He is always working for our good and for His glory, even when the circumstances are hard!

Tonight I want to share again my words from last year, with some more recent pictures of "our everyday, walking {or more often running}, talking {all. the. time.}, breathing {which we'll never take for granted after seeing her "blue" too many times}, giggling {ALWAYS!} reminder of God's amazing grace, power, and goodness".

From my 2013 World Prematurity Day post: 

The night that my water broke at 30 weeks, my friend Kathy shared these verses with me:


I waited patiently for the LORD;
   He turned to me and heard my cry.
He lifted me out of the slimy pit,
   out of the mud and mire;
He set my feet on a rock
   and gave me a firm place to stand.
 He put a new song in my mouth,
   a hymn of praise to our God.
Many will see and fear the LORD
   and put their trust in Him.
  Blessed is the one
   who trusts in the LORD,
who does not look to the proud,
   to those who turn aside to false gods.
 Many, LORD my God,
   are the wonders You have done,
   the things You planned for us.
None can compare with You;
   were I to speak and tell of Your deeds,
   they would be too many to declare.
~Psalm 40:1-5

I clung to those verses for dear life during the time I was in the hospital before Ammah Grace was born and during the time that she was in NICU.  God was so gracious to us in giving us wonders too many to declare with Ammah Grace!

As often as I feel I've shared Ammah Grace's story, there are always people who haven't heard it. You can read more here, here, and here. We were cautioned by her neonatologists that she might never walk or talk, and that she could be blind and/or deaf.  I still marvel, almost 10 years later, at our running, laughing, always-talking, bright and healthy reminder of God's faithfulness and glory.

Prematurity is such a scary thing.  The NICU is a world unto itself that no one wants to enter.  What a blessing, though, to have the technology and medical advances that we have today, and to have the highly-skilled, compassionate doctors and nurses who work with these tiny little ones and their families.

God taught us so much through those days that I don't know if we could have learned any other way, and I am so thankful for that.  I am also so thankful for the many people who helped our family in so many ways during that time, and for the many, many who prayed for her.  The "Ammah" in Ammah Grace was my great-grandmother's name.  We discovered after she came home from the hospital that "Ammah" is a Biblical place name that means, "God's people".  What a perfect name for our little preemie, in whose life God's people played such a huge part.






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11.12.2014

Do Not Fear!

A little more encouragement tonight for those struggling with "big storms"...a repost from the archives. 




(This was supposed to post last night...not sure what happened, except that I was having computer issues, and apparently when it said it posted, it didn't. :))


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Welcome to Ponderings of an Elect Exile!  Whether you are new here or a faithful friend and regular reader, I'm glad you're here!  If you aren't already following, I'd love to have you join us for the 2014 Ponderings.  It's easy to do, in a variety of ways!  You can follow via  Facebook, Twitter, and/or Pinterest, or  find me on Instagram as Jenbh68. You can also sign up in the sidebar to receive new posts by email.

11.11.2014

He is Faithful to Complete It! {Redeeming One of "Those" Days}


Being reminded of this truth again today!!







Today was "one of those days" when the need to work on heart issues (along with a bunch of unrelated interruptions) crowded out the "school" I had planned for this afternoon. My plans for the day were shredded and I was worn out and beyond frustrated by the time we left for TKD. I didn't feel like there was much left of the day to redeem, but I prayed that God would redeem it anyway.

Since then, my kids (with a little, but not a lot of, input from me) have had a fabulous conversation in the van about the Geneva Convention, international law, and changes in warfare over the last couple of centuries, AND even better, I've seen some major improvements in some of those heart issues we dropped everything to address this afternoon.

Thankful for God's reminders that He always equips us for what He has called us to do, and that when we feel like we are totally inadequate for the task, HIS strength and abundance are just beginning. He Who began a good work (in me and in my children!) will be faithful to complete it!


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Welcome to Ponderings of an Elect Exile!  Whether you are new here or a faithful friend and regular reader, I'm glad you're here!  If you aren't already following, I'd love to have you join us for the 2014 Ponderings.  It's easy to do, in a variety of ways!  You can follow via  Facebook, Twitter, and/or Pinterest, or  find me on Instagram as Jenbh68. You can also sign up in the sidebar to receive new posts by email.

11.10.2014

Oh, Yes, He Cares!





I know many of you are waiting for the Guy Penrod/Road Trip post, and it's coming, I promise! But not tonight. Long day yesterday, less than four hours sleep, and another long day trying to catch up on the to do list that has been spiraling out of control haven't left much time or energy for photo editing or long, newsy blog posts.

And frankly, my heart is aching tonight. Friends are hurting, and I am hurting for and with them. I have all kinds of hopes and dreams and plans for the blog, and I'm especially excited about the concert post right now, but always, people come first. And tonight has been one of those times that the list and the posting schedule got pushed aside for friends in need.

Anyone who's read much here knows that music is always a balm to my heart, hymns in particular. I've been sitting here tonight listening to my favorite arrangement of this hymn, a duet with Guy Penrod and George Beverly Shea, and thinking how powerful the words are. No matter what we go through, ever, no matter how impossible or horrific it seems...He cares for us. 


Does Jesus care when my heart is pained
Too deeply for mirth or song
As the burdens press, and the cares distress,
And the way grows weary and long?

Does Jesus care when my way is dark
With a nameless dread and fear?
As the daylight fades into deep night shades,
Does He care enough to be near?

Does Jesus care when I've tried and failed
To resist some temptation strong;
When for my deep grief there is no relief,
Though my tears flow all the  night long?

Does Jesus care when I've said "goodbye"
To the dearest on earth to me,
And my sad heart aches till it nearly breaks--
Is it aught to Him? Does He see?

Oh, yes, He cares, I know He cares,
His heart is touched with my grief;
When the days are weary, the long nights dreary, 
I know my Savior cares. 

~Frank E. Graeff


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Welcome to Ponderings of an Elect Exile!  Whether you are new here or a faithful friend and regular reader, I'm glad you're here!  If you aren't already following, I'd love to have you join us for the 2014 Ponderings.  It's easy to do, in a variety of ways!  You can follow via  Facebook, Twitter, and/or Pinterest, or  find me on Instagram as Jenbh68. You can also sign up in the sidebar to receive new posts by email. 
 

Road Trip!! {Guy Penrod Claremore Preview}

It's 11:50 p.m. I just walked in the door from a road trip to Claremore, OK, to see Guy Penrod in concert. I am uploading pictures as I type, in hopes that I can quickly edit one or two and get this tiny preview post up before midnight. MUCH more to come, in story and photos, soon!




(While you're waiting, check out the previous "Penrod Posts" here!)

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Welcome to Ponderings of an Elect Exile!  Whether you are new here or a faithful friend and regular reader, I'm glad you're here!  If you aren't already following, I'd love to have you join us for the 2014 Ponderings.  It's easy to do, in a variety of ways!  You can follow via  Facebook, Twitter, and/or Pinterest, or  find me on Instagram as Jenbh68. You can also sign up in the sidebar to receive new posts by email. 
 
 

11.08.2014

Another Unexpected Path {Epilepsy Awareness Month}




On April 7, 2012, I wrote these words:

Another unexpected path...

I started to call it a detour…it sure seems like one to us!  But then I realize that this is not a detour…it’s actually the route planned for us since before the foundation of the world, by the Author and Creator of all.  It’s “THE path”…totally unexpected by us, but no surprise at all to the One who holds us in the palm of His hand.

Today our 12-year-old daughter was diagnosed with Juvenile Myoclonic Epilepsy.  It wasn’t a totally unexpected diagnosis…we’ve known for over a week that we were more than likely dealing with some sort of seizure disorder, and suspected for several days that the specific disorder would be Juvenile Myoclonic Epilepsy.  And we’ve had a pretty good idea since December that something was wrong somewhere…although it took us a while to get to the right doctor to get to the bottom of things.

Epilepsy has definitely been an unexpected path for us. JME is a genetic epilepsy, and to our knowledge, there is no history of epilepsy in our family. When Bayley had her first seizure (which we weren't sure was even definitely a seizure at the time, as she was alone when it happened; friends outside the room said it sounded like a seizure, but we had no way of knowing) almost 3 years ago, we had no idea what was in store for her and for our family.

As in every other "storm of life" we've faced, God has been abundantly faithful throughout the years since. There have been some major bumps in the road along the way, but for the most part, Bay's seizures are well-controlled by medication and lifestyle precautions (adequate sleep being the most important of those). She has been seizure-free for well over a year now, and for that we are extremely thankful!

Bay recently started a new blog (Pure Life), and after a couple of years of being very hesitant to talk about her epilepsy, has spoken publicly about it there. Not only am I beyond proud and excited of her new blogging endeavor, I am also thankful beyond words for the work God has done and is doing in her life and her desire to share His faithfulness in every area, including her epilepsy.

November is Epilepsy Awareness Month. Last year around this time, I created, but never shared, a Seizure First Aid graphic. I may share some additional facts about epilepsy later this month, but for now, I'll close with that graphic. I'll just come out and say that graphic design is not my strong suit, and this graphic was created with a website I'd never used before and haven't used since, so it's not the most professional or artistic of graphics. :)  The info it contains, however, could be lifesaving.


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Welcome to Ponderings of an Elect Exile!  Whether you are new here or a faithful friend and regular reader, I'm glad you're here!  If you aren't already following, I'd love to have you join us for the 2014 Ponderings.  It's easy to do, in a variety of ways!  You can follow via  Facebook, Twitter, and/or Pinterest, or  find me on Instagram as Jenbh68. You can also sign up in the sidebar to receive new posts by email.