Friday, March 19, 2010

Bliss

Hello All!

You may notice that the tone of this blog may be a bit different than you're used to reading here. That is because the author is different. Kristi has invited me (Andrew) to write before, especially given the title of her, er rather 'our' blog. Until now I have not taken her up on the offer. The occasion? Our anniversary!


Kristi and I are celebrating our 4th year of marriage! I almost wrote wedded bliss, but that would not exactly be accurate. We have certainly not had four years of bliss. If I had known what I was going to experience in my first four years of marriage I would have thought twice. Before you start getting angry at me and feeling sorry for Kristi, please let me explain some of the not so blissful things I'm referring to.

About two months before we married, I lost my job. Then I decided it would be a good idea to get married, start a new job, move and buy a house in a two week timespan. Our wedding day was awesome, and we were happy simply because we were together. However, cramming all that I did into those two weeks was probably not the best idea I've ever had. It didn't exactly help us to experience much bliss-even at the start of our marriage when everything was "supposed" to be nothing but bliss.

Eventually things calmed down, and bliss did come our way. Suprisingly, I can't remember too much about that year and a half. All I can say is that we grew closer and had too much time on our hands. I know this because we spent way too much time fighting. At least we also had the time to make up...hence bliss! :)

That bliss is also partially responsible for the next season of not so blissful events. I am sure that most of you know the story...

"Suprise, we're pregnant!"

"Suprise, it's twins!"

Uneven fluid levels

Baby in distress

28-week hospital admittance

28-week delivery

2lb beautiful boys in NICU

PDA that wasn't closing

Brain bleed

PDA closed!

Hydrocephalus

Shunt surgery scheduled

Shunt surgery cancelled

Seizures

NEC

Surgery 1

Surgery 2

More seizures

50 days- Caleb home

One baby home, one in NICU

Thanksgiving

Christmas

New Year

Surgery 3

Balancing NICU, work, and home

130 days- LUKE HOME!

Dr.'s appointments

Therapy

Growth

Development slows

"Startles" appear

Happy 1st birthday!

24-hour EEG

St. Louis Children's

Infantile spasms diagnosed

Drug decisions

Seizures increase

More decisions

Ketogenic diet starts

Seizures continue

Lots of poop

18 days without a seizure!

...and that about brings us up to the present. Call me crazy, but bliss does not seem like the most appropriate word to describe this season of our lives. As it is with the truest and deepest human experiences, all words become extremely inadequate descriptors.

When I think over the events of the last two years, instead of words, I see thousands of snapshots. Moments captured forever in my mind. Many with intense emotions tied to them. Some with fear, heartache, and disappointment. Others with wonder, joy, and peace. Most with a confusing mix.

Almost all of them with one common character: Kristi.

I don't think anyone ever really knows the magnitude of what they are saying when they say, "I do." Two little words with such enormous weight. We didn't use the classic sickness/health, better/worse vows four years ago, but the commitment was essentially the same: "I'm with you, no matter what."

"No matter what" can happen a lot faster than I ever realized when I made that committment. I have experienced far more in four years than I ever thought possible.

  • I never thought I wouldn't get to cut my child's umbilical cord. 
  • I never thought I'd hear people ask "Are they twins?" so many times in one day. (Some day I'll get up the nerve to respond, "No, they're triplets." and then scream in horror as if I'd lost one.)
  • I never thought that I would be so excited to see my son poop the right way after pooping into a bag for months. 
  • I never thought that the same diet that would decrease his seizures by 90% would also cause him to have "blow outs" several times daily. (Thankfully, Kristi has had to clean up exponentially more of these than I have.  I'm going to nominate her for sainthood the minute I have enough time to fill out the paperwork!)

Although I've been casting most of these experiences in a not-so-blissful light, I would be foolish not to mention all of the good that has also come out of this season that I never thought would be possible.

  • I never thought I could experience so much elation and joy even in the midst of severe heartache. 
  • I never thought I would feel the presence of God simply by holding my child for the first time.  
  • I never thought I would laugh so many times in one day. 
  • I never thought I would cry tears of joy after seeing a picture of my son standing up against a couch next to his brother. 
  • I never thought I would enjoy reading the same book over and over and over and over and over again. 
  • I never thought it wouldn't be a chore to change a diaper.
  • I never thought I wouldn't cringe when I heard a baby cry.  
  • I never thought I would see God do so many miracles in such a short time. 
  • I never thought it would be so much fun to be a dad.

  • Most of all, I never thought I would have such an incredible woman with whom to share all of these experiences (that I never thought I would have).  I don't know anyone more hopeful, giving, graceful, or helpful, and she does it all with a simple, elegant beauty. I am so blessed that she is the one that will be with me "no matter what."  I couldn't ask for a better friend to live life with - even the un-blissful parts.  


I was being totally honest earlier when I said I would have thought twice before I married Kristi if I had known what we were going to experience. On second thought, now that I have lived with the decision for the past four years, it was the best decision I could have made. If there truly is such a thing as wedded bliss, it must come from cherishing the fact that you have someone to share all parts of life with.  In that sense, it is entirely accurate to say that I have experienced four years of wedded bliss, and I look forward to many more.

Sunday, March 14, 2010

Wanna see somethin'?

Three months ago I wrote to a handful of close friends. It was Dec. 11th, 4 days after Luke started the Ketogenic Diet.  This is what my email said...




"I promised God that I would truly rejoice in every victory and CELEBRATE without fear that tomorrow I might be mourning again. Do you ever feel that way? Thinking to yourself... "Do I get happy about this?....or will that only make the disappointment that much harder if things go downhill again?" Well, I decided that is no way to live. And being "cautiously optimistic" is perhaps not being optimistic at all. Mmmmh?? Enough of my random thoughts. The point of this is share with you, my prayer-warrrior friends, that today Luke was seizure free. Nothing. Not one. So, in all honesty, there must be some fear still in me cause I'm not brave enough to put this on my status, or on my blog...or even call my family. Somehow putting everyone through a potential roller coaster ride just doesn't seem right. But I didn't think you'd mind. :-) Cause you're strong like that. ;) And I DO want to celebrate!! Thank you for praying and for sharing this moment with me."







Sure enough, Luke seized the very next day and it has been well....yeah, a roller coaster ride in some ways. Of course, we're used to this kind of ride......you remember, right? The whole 130 days in the NICU. That was a crazy ride. 




Anyway, friends what I want to show you is this.........







::Huh?::





That's right....this.   









THIS, you guys....THIS is not just any calendar.  This is the calendar I use to record Luke's seizure activity.  






Did you see it???   Scroll back up there if you need to.   You're gonna want a good look.








:-))))))))    That's right. There's nothing on it!!!!!!!!!!!



October, November, December, January, February......those are all marked up.  But not March. 


I was wiping off the counter today and that calendar caught my eye, and I was.....well, my smile was              W--I--D--E.  


Specifically, Luke has been seizure free for 14 days now.  2 weeks.  You gotta be seizure free for 2 YEARS before you're really "seizure-free".  (reminds me of when we had to wait 5 years before my dad was declared really, truly "cancer free". What's it been now, Dad?  15 years?).    So, we have a little while to go yet.  And, we still have to get a picture of Luke's brain. We'll go back to St. Louis Children's in another month for an EEG. And the EEG will really let us know what's going on up there.   But as far as we can tell....no seizure activity.


Every good gift is from God. And these past two weeks have sure been a gift!
And if there's anything Luke has taught us, it's to just stop, and appreciate each day for what it is, without worry or fear of what tomorrow will bring.


Will we be celebrating when Luke has been seizure free for 2 years?  Oh yes!!!!!


But whether it's 2 years or 2 weeks......both are reasons to be thankful.  God is so good!







I think Luke's pretty happy about it.  Here he is on Day 14 of seizure freedom.




One of these days I'll have to show you all the things he's beginning to learn now that the seizure monster is moving out.  They're small things to most of you.  Not to us.  To us, they're huge.   When seizures are wreaking havoc, erasing learned skills and keeping you from learning any new ones, you appreciate every. little. thing.    Ah well.....Since you're already here, I might as well show you one thing he loves to do now.....



Where's Luke?











       



            Wheeere's Luuuuke?













Peek-a-boo!!!



Wednesday, March 10, 2010

Simplicity


"...Mark this:  Unless you accept God's Kingdom in the simplicity of a child, you'll never get in."  Luke 18:17 (The Message)






We received a very special package at our home last November.  The story begins with my Aunt Sharon and Uncle Duane, who serve as the Children's Ministries Directors for the North Texas District.  Uncle Duane had attended a children's conference in Minnesota last Fall.  During the conference, the children were invited to simply rest and soak in the presence of God and afterward encouraged to share what they thought God might be saying to them.  Later the next day, some of the children were asked to draw pictures of what God had spoken to them.  Uncle Duane said it was an amazing thing to see the children respond to the presence of God.


A few weeks later, after my uncle had returned home to Texas, he felt impressed to share Luke's needs with the leader of this conference. Luke's needs were shared with this group of children at Park Assembly in Minnesota.  Their children's pastor explained some challenges that Luke was facing and then they spent time praying specifically for Luke.  Afterwards, they were given an opportunity to write down any words or pictures that they were given during that prayer time.  












You'll see why were so touched by these letters and pictures.  You'll also understand why some are tear-stained.  We opened the package and read each one. I can say in all sincerity the presence of God filled our living room that day.  It was all so simple, and yet so anointed by the Holy Spirit.  






The letters and pictures couldn't remain in the package. 








They were pulled out and read over and over and over again.  We have framed a few of them to hang in the boys' room, as a reminder of God's Word and His promise.








We've endured some very difficult days in the last 4 months. You can't receive news that your son is diagnosed with a rare, catastrophic epilepsy disorder without having your world crumble. The diagnosis came at time when Luke already seemed so fragile...even without epilepsy.   We were already facing a Grade 3 and Grade 4 brain bleed resulting in significant fluid on Luke's brain, ramifications of intestinal surgery, visual impairment, developmental delays, a feeding tube, a weakened immune system.......only to be followed by those frightful words, "Your son has Infantile Spasms."




Enter the children of Park Assembly in Minnesota.








They heard about Luke, as I said, through my uncle. This is what they had to say....or rather, what they sensed God was saying to us about Luke.








Hi, my name is Austin and I just wanted to tell you God loves you and that I am praying for Luke. This is God's heart and this piece of God's heart is going out to Luke.












God is going to heal Luke!!! I am praying for you and I hope you get comfort from God. Healing power is being released for Luke to heal. God loves Luke and Luke's parents and he wants them to be comforted because Luke will get healed. 









Hope is always there!  The sun will shine at just the right time.












Dear Family of Luke, 
My name is Michelle Asare. When you get this prayer I want you to say it.
Dear Heavenly Father, I pray that you'll come over Luke.  Cover his body with your blood. We cancel any plan of the devil right now in Jesus mighty name. We pray that Luke has no more sickness. Fire right now go away. Come over him and heal him.  Amen.







I'm praying for you Luke.  get better soon!

(I love the picture of God lifting weights, saying "This is a sinch!"
And, of course, the sun with sunglasses on.)  :)

















So, here they hang on the wall.....as daily encouragement.











I put a couple more on the fridge. I don't believe in a "clean" refrigerator  door. :)   




God will heal Luke.






The Father of God will heal your son completely.  


(Can you guess  which word is my favorite in this picture?   Completely.)













The other day as I was preparing one of Luke's ketogenic meals, I opened the fridge and glanced at the pictures hanging on the door. I thought, "mmmh...I never would have guessed when I hung these pictures up, that part of Luke's miracle would literally be in the fridge."  Certainly as far as seizures are concerned, I truly believe our miracle has been the ketogenic diet..... so thankful that God gave us the wisdom to choose this treatment and that Luke's body has responded as well as it has.



Maybe one day, I'll be able to thank the kids of Park Assembly in Minnesota in person.... To hug their necks and tell them how much it means to us that they are praying for our Luke. 

 I have a whole bunch of kids to thank......all over the world. From 2-year olds to tweens...they're all praying.  I can't tell you how many times I've been told, "My kids pray for Luke every single night!"  There are stories of kids calling parents back into the room at night "because we forgot to pray for Luke, Mom!"   My cousin's children took a recent list of prayer needs we sent out and divided it up amongst themselves so that each area is prayed for everyday.  



We've been so touched by these constant, fervent prayers. They mean the world to us.  I can't wait to share all of this with Luke and Caleb one day.  To show them how much kids matter in the Kingdom of God.  


 I know despite all the miracles we've already seen, there is more to come. 


We simply ask.....simply trust....simply wait for a complete work of healing in Luke's life.