August 4

Hi there!  Haven't written in a few days cuz my sister and her two children were here.  Whew!  I got a nice break.  Darci fed Cody, rocked him to sleep, did our laundry.  Not much of a vacation for her, but it sure was for me!  Course she didn't hear me protesting much - thanks, Sis! 

We had an appt. with the keto dietician for today but she postponed it till the 24th.  It was a mixed blessing for me.  I really want to get rid of these seizures, but I also really don't want to have to figure out a whole new way of eating for Cody.  And I'm secretely hoping that by the 24th, his seizures will be gone and we won't have to embark on the diet at all!  Feel free to join me in that prayer, by the way! 

After 20+ seizures all week, yesterday we only saw 5 and today it's been 5 so far (at 6pm.)  So I ***hope*** things are dying down.  His 2nd back molar just came thru his gums so I think my suspicions were correct - this molar is what spiked his seizures.  Time will tell for sure. 

By the way, please this video: http://www.youtube.com/watch?v=WjPrL3n63yghttp://www.youtube.com/watch?v=WjPrL3n63yghttp://www.youtube.com/watch?v=WjPrL3n63yg

with love, Shawna

August 7

Wow - I am yawning as I write this.  Cody went to sleep at 9:45 last night, only to wake up from 2am - 4:30am.  He got up for the day at 8am...as did I.  Because he tossed and turned all night (thanks to his new molar) I don't think I slept for more than 2 hours accumulitavely.  I waited all morning for that sleepy eyed look he gets...all the while anticipating:  he's got to be SO tired from last night...when he goes down for a nap I'm going to get so much sleep too!  Finally, at 11am he fell asleep.  I put him in his crib and tiptoed into the adjacent bedroom, crawled underneath the down blanket, and euphorically closed my eyes.  Fifteen minutes later, I hear, 'Yeeeeeeeeeeeeeeeeeeeee!'  There sat Cody straight up in his crib grinning from ear to ear, ready to party.  ARRRRRRRRRRRRRRRGH!

Life, for me, is SO much about expectations!  If I hadn't counted on getting a nap, I wouldn't have been so frustrated.  but because I'd built it up in my mind all morning...this sudden smiling little one was quite aggravating.  And now at 6:24pm, he STILL hasn't slept more than that 15 minutes all day.  Well, at LEAST that means he'll sleep well tonight (you might think...........)  but nope.  Kids with neurological problems are notorious for not sleeping well.  And I'll bet tonight brings us another night of fractured sleep.  Yawn.  The big fat bummer is he can't be left alone to sleep in another room because of his constant eye poking.  Plus he has seizures in the middle of the night.  We've tried putting him in another room with the video monitor, but neither one of us wakes up soon enough to stop the eye poking - Cody can be awfully stealthy when he wakes in the middle of the night!  He can lay there still and quiet, yet with a finger jammed smack dab into his eye socket!  So for now, we are still sleeping with him - taking turns every other night.  Life is CRAZY.  HE must poke his eyes 40 times a day - our spray bottle aversion therapy is not working. 

On the fun side (but isn't the thought of him jamming his index finger into his eye fun enough?)  he figured out how to do a somersault today!  His new fascination is leaning down so that his head and feet are on the floor at the same time.   His body kind of forms an upside down "V".  Well he accidentally rolled forward too far and did a somersault!  Boy did he think that was a stitch!  I'm sure I'll see many more before the night's through.

One last good note - we saw our beloved pediatrician Dr. Olivia Jones today for a routine check up.  She hadn't seen Cody in a few months and as he walked down the hallway toward her, I could see the tears spring in her eyes.  She echoed what I've heard from many in the medical field:  After over a year of uncontrolled seizures from a catastrophic seizure disorder like infantile spasms, Cody "should" be on a respirator, a feeding tube, or at the very least NOT walking.  She was shocked at how well he's doing in light of the last 14 months of his life.  I have to keep remembering that even tho he's still having a dozen seizures a day, this is BETTER than anyone ever thought he'd so.  I must be grateful for that rather than looking at what he can't do.  He had two seizures in her office and fell apart after them.  It's so easy to be negative instead of positive.  If only we weren't dealing with these darn seizures, I think life would be a whole lot different.  But there's something so eerie and creepy about watching your child's eyes roll back in his head, and watching his entire body stiffen 20 times a day.  All of his seizure types appear in the "video" section if you're interested.  I pray that he will be delivered from these things...as I've prayed from day 1. 

Dr. Jones, bless her heart, always checks in with me before I go.  She is one of those Dr's whose healing abilities extend far beyond medicine.  She said, "so how are YOU?"  And while most Dr's ask that question with their hand on the door knob, she stared intently at me as if she had all the time in the world to hear my answer.  "I'm hanging in there", I replied.  We continued to talk about life, love, babies, faith, trials...what a blessing to have your Dr. actually care so much.  Thanks, Dr. Jones!  We love you! 

Well, daddy's home and that is BIG fun so I gotta go!  Love to you all,

Shawna

Aug. 9

Today was really scary - Cody's seizures looked really different two times.  He had about 15 seizures total today, and two of them were really weird.  His arms and legs both shot straight out and stiffened, his face turned red, he lurched forward, and started to shake.  Not quite a grand mal...but certainly seems akin to one.  I am very worried.  After both of these different ones he conks right out - falls asleep immediately - even after just having woken up from a nap.  I have two messages to his neuro (one was sent 1.5 weeks ago and still no response!)  I'm wondering if we should give him some klonopin (the "next" drug suggested by everyone) as we wait for the diet appointment which is still 2 weeks away.  He's due to start a modified keto diet in 2 weeks, but it takes 1-3 months to work.  I'm wondering if we should use the klonopin as a band aid until the diet kicks in.  These seizures seem to be catching like wild fire and I'm scared to let them continue to run their course over the next two weeks and longer. 

I'm SOOOOOO tired of this grind.  So tired of having to make such huge decisions...to medicate...to not medicate...to diet....to not diet...to take a risk and do neither?  I just want these blasted seizures to go away.  Our plate would be entirely full without the seizures - not to mention with them!  I just can't bear the thought of a new seizure type coming on board, more EEG's, more opinions, more decisions.  Please, Lord.....release my son from the grip of these evil seizures.  Please don't tarry, Lord.  Watching him seize 15 times - with two of them so especially scary - sometimes I think I'll lose my mind. 

On that note, while we're talking of prayer, would you mind throwing one up for my migraines?  I have had a constant one for months and it is debilitating at times.  Obviously, I cannot be debiliated - just not an option.  I'm doing chiropractic, massage therapy, even considering acupuncture.  They are stress induced, always have been.  I don't see an end to the stress - so please pray for relief.  I must take care of the Code-man and can't afford to have a 'down' day from a migraine.  Thanks so very very much.

with love, Shawna 

Aug. 12

Still battling these dreaded seizures.  Yesterday 12, today 8 (so far.)  Today I haven't seen the "scary ones" as I call them - where his arms & legs shoot out and stiffen.  Today have all been the staring spells that we've fought for the last few months.  I have 3 messages into the neuro about the amount of seizures + the new ones I'm seeing.  He never called - all week.  How can these Dr's sleep at night knowing there are people in crisis and they just leave them hanging?  Hopefully I'll hear from him Monday and he'll tell me whether my panicking is legitemate.  Course I got a fresh migraine today.  These headaches are absolutely plauging me.  I almost had to pull over on my way to the grocery store from the nausea.  I just have to have an end to these - it's literally impossible to care for Cody when I have one.  Luckily Don took over this weekend. 

On a lighter note, Cody had his last swimming lesson today.  He even went down the big water slide on dad's lap!  He's really obsessed with water lately - he will sit with his hand under running water for HOURS if we let him!  Case in point - here he is with his teacher:

The sad part was the "graduation card" we received at the end.  It says:  "Cody Graves graduated from the parent 'n Tot swim program"  but there is a list of 10 "accomplishments" that get checked off for graduates from this program like "blow bubbles",  "kick on stomach and back",  "support self on wall",  "back float with support"....and Cody didn't have a single one checked off.  Another vivid reminder that he isn't "normal."  While the other tots his age accomplished each task throughout the 5 week class, Cody basically stared at the ceiling, splashed in the water, tried to take drinks from the pool, etc.   He just doesn't have the cognitive ability to mimic, so any attempts the teacher made to have him blow bubbles were just met with a blank stare.  When all the other kids kicked like the teacher, another blank stare.  He's just in his own world.  Don and I got out of the pool - both feeling a bit - I don't know....sad?  We are grateful that he loves the water and didn't have a tantrum every time he went into it like many delayed or autistic kids do.  It's just so hard to see the other 20 month olds see the teacher blow bubbles once, and they're instantly doing it.  So hard to understand where the glitch is that prevents Cody from "getting it."  I pray someday he will.  Till then we persevere - and yes we'll be in that pool the next session of swim lessons even if our child is the only one who gets no "checks" beside his name.  He'll still get all the opportunities to learn that the other kids get.  And we'll have fun even if it's just splashing about. 

gotta go - time for beddy by!  love to you!  Shawna

Aug. 13

Believe it or not, I think my migraines have been a gift, a blessing.  I've been thinking a lot about them.  I've had one almost every day for months.  And it's come to the point that I literally cannot take care of Cody with these migraines.  They are completely debilitating.  After praying about how to deal with this...I think God helped me see an answer. 

I've always known my headaches are purely stress induced.  I've had them off and on for years - they began when I first started anchoring the news.  Twenty four hours after each time I anchored (which was weekends only), I would get a searing migraine.  Ever since then, whenever I experience something stressful, I notice that I get a migraine about 24 hours later.  Nowadays, it happens after every EEG, MRI, every developmental evaluation...and these days the headaches just never go away from the stress of his seizures, eye poking, etc.  So I'm grateful that I at least know exactly 'why' I have them.  Many people never figure that out.

So as I've prayed about them for the 100th time, I realized that I literally CAN'T afford to be stressed.  I won't be able to take care of my son if I'm stressed because I will get a migraine.  As I took that to the Lord, asking Him HOW can I possibly not be stressed out with the life I lead - I felt this scripture come to me:

"Do not be anxious about anything.  But in everything, by prayer and petition, with thanksgiving, present your requests to God and the peace of God, which transcends all understanding, will guard your hearts and minds in Christ Jesus." 

I realized that the only way I can care for Cody - is to LITERALLY not worry.  Usually I "try" not to worry cause it's "bad" - but I'm now in a position where I CANNOT worry.  I CANNOT afford a migraine.  So I've tried to put this into practice the last couple of days and it's so counter intuitive!  For instance, he's had 7 seizures today and each time, I *usually* feel my heart race, I get sick to my stomach, and my thoughts instantly race to:  "what are we going to do?  How can we stop these?  what is this doing to his brain?"  Today, I literally forced myself to shut all those thoughts out.  I blanked my mind.  The times they still broke through, I prayed that scripture:  "Do not be anxious about anything.  But in everything, by prayer and petition, with thanksgiving, present your requests to God and the peace of God, which transcends all understanding, will guard your hearts and minds in Christ Jesus." 

I'd tell the Lord, "Oh, I want to worry so bad!  I want to feel so much stress!!!"  As Cody wails in my arms after each seizures, I told Him, "I want to feel mad!!!  I hate what this is doing to our lives!!!"  Instead of "feeling" the stress, I told the Lord about it and let it go....instantly.  It is SOOOOOO hard.  One of the hardest things I've ever done.  I actually feel guilty that I'm not worrying enough.  How can I see all this craziness and be faced with so many huge decisions...and yet NOT live in a stressed out state?  Is that okay?????  Worrying has always been, I suppose, my "job".  I can't control these things, but I can at least think about them and strive over them 24/7, right?  

Scripture says it IS okay not to worry.  In fact, scripture tells us NOT to do it.    For me, the key to not being anxious, is to instantly take the thought captive to the Lord and confess it - then surrender it to Him, leaving it as His feet.  And Then I can go about my day in total peace.  At least that's the theory.  I still don't feel like it's "okay" -- but oddly I have no choice.  I have to try to live this way to avoid these awful migraines.  I've only done it one day, but I have been migraine free all day.  We'll see how it goes!!! 

All that to say, I guess the migraines I've cursed for months have forced me into a Biblical corner - 'do not be anxious about anything.'  I pray that God will help me to do this. 

I liked it a lot better when taking a pill used to make the headaches go away!  Much easier.  Haha.

with love,  Shawna

Aug. 17

Gosh, these entries have all been kind of dismal lately - but things are getting worse.  Cody had over 20 seizures yesterday, 6 of them woke him up from sleep and the rest were much much more dramatic than normal.  I finally heard back from the neuro after 3 emails and 4 phone calls - his only words (thru his asst.) "I called in a prescription of klonopin."  If I could talk to him, I'd have a million questions before putting Cody on this drug:  can it be short term?  what are the side effects?  can he be on it while starting the diet?  how much damage will be done if we don't put him on it?  But alas, none of my questions will be answered so as usual, I'm left to be the Dr. myself.  I've hunted all over the web for insights about this drug, and emailed Dr. Chugani.  It seems people use klonopin for long term or short term use -- it can be used just to provide a band aid over a bad seizure period - which is how I would treat it.  IF we put him on it, it will be a low low dose meant only to get him thru till the point where the keto diet provides some relief (if, in fact, it does.)  So if he's not better today, he's going on klonopin tonight.  It breaks my heart to do another drug.  Klonopin is sedating so I'm sure I'll have another little zombie man on my hands.  But if the alternative is a day like yesterday, I don't feel I have much choice.  Yesterday was about as ugly as it gets - 20 seizures - one happening every time I turned around.  We were up all night with his seizures, and he couldn't sleep a wink all day from them.  And, of couse, lack of sleep contributes to more.........SEIZURES.  What a viscious cycle.  He is having a molar come in, but there are  2 more after that one too so I don't feel like we can just "wait it out" any longer. 

We start the diet next Friday - and it takes 1-3 months to determine if it's helping at all.  So hopefully this drug could be weaned after a month or so.  That's about all I have to say.  I'm fed up, frenzied, frustrated...how's that for alliteration?  Don't have a lot that's good to say so I won't bore you with anymore bad. 

At least I haven't had a migraine in the last 2 days!  Whew.  My attempts to "not be anxious over anything" are certainly being tested! 

with love, Shawna

Aug. 20

Poor Code-man.  His seizures had escalaed to 20 a day...his molar was bursting thru causing non-stop screaming...he hadn't slept in days...wouldn't eat.  I prayed and prayed for relief.  And guess what - he got a horrible cold instead!  Thurs. he started sniffling and was up all that night unable to breathe.  Don and I were up with the scream-meister all night Thurs. and Fri.  I've given him every "cold aid" possible - but he just can't breathe.  I think the screaming is just from being overwhelmed with so much at once.  He's just undone - stuffy nose, sneezing, no sleep.  And of course, he gave it to me so I literally did not sleep a wink last night from my own razor blade sore throat and stuffy nose.  What a household we are!  Isn't it crazy when it seems like God answers your prayers in the reverse?  Now we've got tons of seizures, molars coming thru, a bad cold, no sleep - all swirling together to create "typhoon Cody." 

We haven't given him any anti-seizure drug because I've been giving him cold medicine and they can't mix.  So his seizures are still totally out of control.  Can you believe this, tho?  No migraine thru all this stress.  Amazing - so one thing to definitely be grateful for. 

It just slays me when you are on your last leg - praying for relief - and instead you get thrown a cold to deprive you of even more sleep (if that's possible) and stretch me even thinner as I try to care of this little boy.  Just one of those times you throw your arms up in the air and say, "Okay God...one more thing to get through."  Life just keeps handing us fires to put out - a new one every day.  If it's not a molar quadrupling his seizures, it's a cold.  And next week it will be something else. I guess it's just a matter of getting used to trials and not "expecting" things to go smoothly...then when they do it's just an added bonus. 

He's having to wear his leg braces in the midst of all this for the first time and luckily he hadn't pitched too much of a fit over them.  One more thing to be grateful for. I wish I had better news - I fear you will all stop checking in from the sheer depression of it!  But I'm not one to fake it.  This, too, we will make it thru!  We start the diet Friday so I hope that in the months to come, we will see a reduction in these dreaded seizures...for they are what plague me most.

with love, Shawna 

Aug. 21

It's 4:19am.  My 3rd night with no sleep.  The last two sleepless nights were from Cody's and my colds.  He's been unable to breathe and wakes up all thru the night crying.  And when he slept, my own stuffy nose and sore throat kept me up.  Yesterday I continued to pray for relief.  I was at the end of my rope.  No sleep, taking care of a sick child who, on top of a cold and molars coming thru, was having 10 seizures a day.  We'd gone to the local swimming pool and were having the best time...when a seizure overtook Cody and he went completely stiff in the water and almost fell out of my arms in the lazy river.  Needless to say, our swim was over.  He was shaken up and started to cry.  I was shaken up having barely been able to hold on to him in his seizure mode in the water.  So we packed up after just 20 minutes and left.  That's when my migraine hit.  This is possibly the worst migraine of my life.  On top of everything that was already plaguing us...this headache.  I just don't get it.  I try SO hard to tackle this life of ours.  And I feel like I just keep getting shot in the foot.  So now Cody has a cold, I have a cold, and a migraine.  I can barely see straight.  My head is pounding.  And my constant prayer tonight is, "Lord, please just let me be able to take care of Cody tomorrow."  I don't know how I will manage it.  But I guess He does.  He allowed this.  He keeps allowing this.  Fire after fire.  Crisis after crisis.  I went to bed at 11p trying to find a way to sleep - and wouldn't you know - Cody woke up screaming bloody murder over who knows what.  For hours, screaming, writhing, flailing.  Is it gas?  Reflux?  His cold?  Seizures?  I have no idea.  This happens about twice a week - out of nowhere he just stays up all night screaming.  He just now fell back asleep at 4am.  I'm sure he'll be back up in an hour....inconsolable.  His 3rd night with no sleep.  I just don't "get" things like this.  We are just hanging on by a string...plowing through each day...and it seems whenever something "can" go wrong, it will. 

"Lord, are you up there?  Did you forget our address?  I know there are people starving in other parts of the world.  I know suffering is going on everywhere.  But here in our house, I'm barely hanging on.  It's one thing to deal with a diagnosis that nearly promises a lifetime of retardation.  It's one thing to deal with 10-20 seizures a day.  It's one thing to deal with no sleep for 3 days straight...on top of no sleep for the past year.  It's one thing to deal with double colds.  But a throbbing, searing migraine on top of it ALL?   That will last 3 days????  I'm scraping by as it is, but I literally can't take care of my child with this level of pain.  Lord, you made me a mom and you know that I have to do my job.  I simply cannot afford to be out of the game for 3 days.  I can't afford this many nights of no sleep.  I HAVE to be able to take care of Cody.  I give this to you, Lord.  I know you are the great I AM.  I don't have the strength for this migraine...so I pray I'll be able to draw on Your strength...and somehow do the next few days with this headache.  We have an important appt. Thurs. that is 2.5 hours long with the dietician where I have to be attentive and learn a lot.  I pray You'll protect that appointment, God.  

God, I admit I'm mad and it is hard to turn to You in this moment.  How simple could it have been to take this migraine away in the midst of this rip tide of trials?  How hard could it be to give me one night of sleep?  As I shake my fist at you, my other hand is wrapped around your robe...as my voice screams out in anger...it also sobs into your bosom.  Where else would I go?  It's the middle of the night.  The world is asleep.  You are still my hope and my strength.  You are still I AM.  I don't know how I'll get through these next days but You do.   As I question "why?" I want You to know that I also cling to You.  And I know that's okay with You.  You want me to come to You even when it's anger mixed with desperation.  So I leave this at Your feet.  I trust You even though it seems You are the very One allowing this.  I trust You as an act of my will.  Because the Bible says You are trustworthy.  You are perfect.  You love me (and Cody) more than I will ever know."

Shawna

Aug. 22

I'm in total shock.  For the first time in my life, a migraine lasted one day instead of 3.  It went away at about 2pm today.  Wow.  I'd barely made it thru the morning and put Cody down for a nap - and I slept for awhile too.  I woke up feeling so much better.  Anyone who has migraines knows they never just last 1 day.  I pray this is it....course my sick mentality is waiting for it to return.  Why is that?  Why do we (I) expect the worst at all times?  Does life train us to do so?  Does the devil tempt us to do so?  Who knows.  But contrary to my jaded nature, I will expect the best instead of the worst tonight as I go to bed.  I've thanked the Lord no less than a dozen times for this relief.  No doubt people have prayed who read this site as well.  Thank you. Really....you have no idea what your prayers do for our family. 

I fear another night of no sleep for us as Cody is already rolling around in bed.  I pray for rest for him, for me, and for Don.  What a concept....rest! 

A Pastor I knew was just killed in a car wreck.  His wife is left with 4 children and 1 on the way.  Can you imagine?  There is always someone going through more.  There is always more pain being had in some other home.  Puts things in perspective.  Altho Cody's trial seems all consuming, at least my husband is alive to share it with me.  Thank You, Lord...that our trial is not life or death.  We are living.  Our child is alive and with us.  We drove safely to and from our appointments and work today.  Thank you thank you thank you.

Shawna 

Aug. 26

What a busy week - my mom's been here helping as we initiate the keto diet and i don't think I've had a chance to sit down in days!  Right now we're not "on" the diet, we are doing "gut prep" by slowly adding fats to Cody's meals plus heavy cream to each meal.  Once he's able to tolerate, we'll remove all carbs and he will go into ketosis.  At that point the seizures may be affected as his brain begins to run on fats (keytones) instead of glucose as it normally has.  There could be weeks of fine tuning the ratios of fats/carbs/protein until it affects his seizures. Or, it may never affect his seizures.  Some kids go seizure free on this diet, some have no change at all.  We'll see how it goes!  I've been completely overwhelmed getting everything down.  I have had to buy blood glucose monitors, keto sticks, blood glucose sticks, urine keytone sticks, a scale, and countless other items.  I've also had to learn a computer program that calculates the ratios of grams of protein/carb/fat in each meal.  It has been very stressful - but I hope there's a pay off sooner rather than later!  The good news is that I love our dietician at OHSU who runs the diet.  She is outgoing, fun, real, and has a very "I'm gonna take care of you" attitude.  She says she'll hold my hand the whole way which I'll need.  If I can master this diet and all it's complicated executions, I think I will deserve a gold medal! 

He's still having 6-8 seizures a day, all pretty severe compared to his old ones.  But he's sleeping better at least.  And he's tolerating his leg braces well even tho I'm not!  I hate those things - always jabbing me, stepping on me, etc.  He has to wear them all day every day so there's never really a time I can sit and snuggle with him.  The big clodhopper shoes & braces are always in the way.  When he sits in his high chair to eat he kicks me with them.  Yipes. 

No migraines since that last nasty one - I'm still practicing that scripture:  "do not be anxious about anything, but in everything, by prayer and petition - with thanksgiving - present your requests to God and the peace of God, which transcends all understanding, will guard your hearts and minds in Christ Jesus."  The more I can get that down, the fewer tension headaches I seem to have.  Go figure!

That's our latest - thanks for checking in!   

Aug. 27

Worship...it's an interesting thing.  I went to church today and as is the case every time...I have difficulty with worship.  It's not that I don't like it - I love it.  Our church has a phenominal band and worship leaders.  I'm still just stuck in that weird place.  Trying to worship a God who has allowed this horrific plague on our lives.  Trusting a God who sees fit to allow Cody to have 10 seizures today...each one making me want to crawl out of my skin with terror.  These seizures take hours off my life each time one happens, I'm convinced.  I simply cannot bear to watch one more.  It's been 14 months of constant seizures.  Sometimes 300 a day.  Now down to a "mere" 10.  Each time, Cody looks like he's dying...eyes roll...body jerks...stiffens...face is flushed...tears in his eyes...shaking...arching...he reaches out for me during the seizures and grips me with a far gone look in his eye.  No parent should have to witness such atrocity. 

And here I stand in church - supposed to worship.  What does that mean? How is that done?  Worship THIS God?  The God who has placed me squarely in the middle of this fiery furnace?  The God to whom I've cried out - begged - screamed to for the last 14 months?  The God who has seemed to do nothing to end my child's agony?  The God who has allowed Cody to slip into what the Dr's call "retardation?"  MY son?  MY special child?  How did he deserve this? 

So I stand in church reading and singing the lyrics:

"Jesus...Jesus...Holy and annointed One...Jesus.  Your words are like honey on my lips.  Your Spirits like water to my soul.  Your Word is a lamp unto my feet.  Jesus, I love You...I love You." 

As my brain wrestles with this Jesus who has allowed such devastating pain in my life...it also wrestles with the fact that the words I am singing still seem to ring true in my soul.  I can't stop them from doing so.  My body feels their truth.  My spirit feels their power.  Such a strange sensation - not wanting to worship but not being able to help it.  Even though I struggle to trust the Lord in this affliction, I also know in a very deep way that God is God and that He's still on the throne.  He is perfect and just.  He is righteousness and truth.  He is the Lord of my life.  How can that be true - and this unresolved angst toward him be true at the same time?  Can anger and faith co-exist?  All I know is that I cannot deny what's true - even when my life is falling apart.  I still tear up when I sing worship songs.  I still feel a deep connection and understanding of God's grace and mercy despite what the world is showing me.  I almost don't want to a lot of the time.  I just want to be mad and disconnected.  I don't want to trust or love a God who won't spare us this pain.  I don't like Him.  And yet, I can't deny Him...my body worships Him even when my mind and heart are breaking.  What a mystery. 

This song was especially powerful:

"Blessed be Your name
In the land that is plentiful.
Where the streams of abundance flow,
Blessed be Your name.

Blessed be Your name
When I'm found in the desert place.
Though I walk through the wilderness,
Blessed be Your name.

Every blessing you pour out,
I turn back to praise.
When the darkness closes in, Lord,
Still I will say...
Blessed be the name of the Lord.
Blessed be Your name.
Blessed be the name of the Lord.
Blessed be Your glorious name.

Blessed be Your name
When the sun's shining down on me.
When the world's all as it should be,
Blessed be Your name.

Blessed be Your name
On the road marked with suffering.
Oh, There's pain in the offering,
Blessed be Your name.

You give and take away.
You give and take away.
My heart will choose to stay,
Lord, Blessed be your name.
You give and take away.
You give and take away.
My heart will choose to stay,
Lord, Blessed be your name"

You give and take away...(and yet) my heart will choose to say...Lord blessed be Your name.  I guess that's what I'm experiencing.  I guess I must choose to say "blessed be Your name" despite my life circumstance.  So counter intuitive.  But Cody IS His.  My life IS His.  He gets to give and take away as He chooses.  He's given my son seizures and He's not taking them away yet.  And still my heart will say...Lord blessed be Your name.

Shawna

Aug. 30

Well, we have our 1st two days of the keto diet under our belts!  Both went pretty smoothly - altho it took me over an hour to plan, calculate, measure and prepare each meal!  We also successfully drew blood and tested his blood glucose level and we measured his urine keytones!  I feel like a mad scientist.  This should all qualify me for a Nobel Prize, shouldn't it?

Cody ate every bite of every meal - he doesn't get a ton of food on this diet so he gobbles it up.  He has a big dollup of heavy cream with each meal which he thinks is the yummiest.  So on we go....he's not in "ketosis" yet - should take a few days.  And hopefully that's when we would see some seizure relief.  If this doesn't work, I DREAD the idea of going back on more meds.  So we're putting all our eggs in this basket for now.  Obviously God could heal him at any minute - but in lieu of that - the keto diet is our best shot at the moment.   

Today was brutal - 13 seizures and all were very severe.  He tried to take a nap and woke up 4 times from seizures.  Poor little thing can't get good sleep because of them.  He is a trooper...still up at 10pm even tho he didn't sleep all day. 

love to you - please pray about these seizures if you can!

Shawna