Saturday, December 31, 2011

Random Thoughts...

Just some random thoughts bouncing around in my head here on the last day of 2011.  Actually, most of them have nothing to do with the end of the year ... they're just things I've meant to blog about over the last few weeks but haven't had the time.  So, here we go.

1.  I turned 46 a couple weeks ago.  Kind of a strange feeling to be closer to 50 than 40.  I suppose I'll start getting stuff from AARP in the mail any day now.

2.  The best part of turning 46 was that I got a new laptop for my birthday.  Take a close look at the picture of the keyboard of my old laptop below.  Do you agree that maybe it was time for a new one?

Actually, this wasn't my laptop was Hannah's.  When she turned 17, her aunts, uncles, grandparents, and even some others, all chipped in and surprised her with it for her birthday.  It was the perfect gift for her, because at that time she was going through her second round of radiation and was out of school.  It helped keep her connected with her friends and the world around her.  Unfortunately, it wasn't long before her vision deteriorated to the point where she couldn't see well enough to use it.  At that point, I took it over, and this is the computer that accompanied us to every hospital appointment and stay, and the means by which I wrote all of the emails which chronicled our journey.  It has served our family well, but lately, it's begun to its number is being retired.

3.  Our Christmas stuff is still up, and will remain up until sometime after January 21st.  That is when we will be celebrating Christmas with my side of the family.  Why are we waiting until January 21st, you may ask?  Because that's when my brother and his family will be home on furlough from Indonesia.  The last time we saw them was just a couple of months after Hannah went to Heaven.  We are absolutely giddy at the prospect of seeing them soon!

4.  There are some very exciting things going on with the "While We're Waiting" ministry, and I can't wait to share them with you.  But, I am going to wait until my next "Tell About It Tuesday" post.  So be sure to check back next week.

5.  I'm excited about starting The 3650 Challenge tomorrow.  What is The 3650 Challenge, you ask?  It's also known as Professor Horner's Bible-Reading System -- a method in which you read ten chapters of the Bible a day, every day, for a full year.  Each of the ten chapters comes from a different book of the Bible.  If followed exactly, by the end of the year, you will have read 3,650 chapters. That would mean that over 2012 calendar year you would read through all the Gospels four times, the Pentateuch twice, Paul’s letters 4-5 times each, the Old Testament wisdom literature six times, all the Psalms at least twice, all the Proverbs as well as Acts a dozen times, and all the way through the Old Testament History and Prophetic books about 1.5 times.  Sounds interesting, doesn't it?  If anyone else is doing it, I'd love to hear from you.  There is actually a Facebook group called The 3650 Challenge to provide a forum for those of us who are doing it.  There are 1,348 members of this group, so I know I'm not the only one.  I plan to use the YouVersion Bible on my iPhone, which has this system available as one of its plans, and also another free app called Bible Bookmarks.  Anyway, I'm going to give it a try...I'll let you know how it goes.

6.  I'm totally geeked out about pulling out my new calendars tomorrow.  I may even have to put them up tonight...I just don't think I can wait!  :)

Thursday, December 29, 2011

Thoughtful Thursday -- What Would I Do If...

On the Tuesday morning before Christmas, I bid Bethany good-bye as she headed off to basketball practice.  Christmas break was already in full swing, but, of course, basketball practice never takes a break.  She walked out the door, and I went into the bathroom and started blow-drying my hair.  I hadn't been in there two minutes when Brad appeared at the bathroom door yelling that Bethany had hit a deer.  I think my heart stopped momentarily before I managed to choke out, "Is she okay?"  He hollered back over his shoulder, "I don't know.  She just called me."  And then he was gone...pulling out of the driveway in his Chevy Blazer.

I yanked on some jeans (pajama pants are my garment of choice on Christmas break), and was out the driveway just a few minutes behind him.  We live in a very rural area, where the roads are curvy, and the deer are plentiful.  I came around a curve, and there they were, both their vehicles on the side of the road, Bethany engulfed in Brad's arms.  I pulled over and joined the group hug.  Bethany was fine, just a little shaken and scared.  Once I was assured that she was okay, I turned my attention to her car...and this is what I saw.

It was pretty ugly, and I hated to see her poor little car all bashed up like this, but, oh my, it could have been so much worse.  She had come around the curve to find four deer crossing the road.  Thankfully, she remembered her dad's advice not to swerve when encountering an animal in the road...if she had left the road, she would probably have struck a tree on one side, and would have gone into a deep ditch on the other side.  And if a deer rolls up and comes through your windshield...well, let's just not go there.

The bottom line is, Bethany was fine.  We made all the necessary calls to the insurance company and summoned a tow truck, and then I drove her on to basketball practice.  The wreck happened only about a mile from our house, and the school is only about two miles farther down the road.  I did walk in with her and explained to her coach why she was late, and why she might be a little distracted at practice.

It wasn't until I was headed home from the gym that the magnitude of the event started to sink in.  "Magnitude" may not be the right word the grand scheme of things, it was really a pretty minor incident.  But to me, it was a reminder, like when Bethany had her concussion a couple months ago, that our family is not immune from further tragedy.

There's something in me that thinks, "We've lost a child to cancer.  Surely that means that nothing more can happen to us."  But I know that's not true.  When we moved from Wisconsin to Arkansas when I was twelve years old, I became friends with a girl who had lost all three of her brothers.  One had died shortly after he was born, one died at the age of ten from cancer, and one (the only one she ever knew) had died at the age of 17 in a car accident.  I knew all of this because she told me about it, but as a kid, I never even considered what her parents had gone through.  They were very kind to me, and I was always welcome in their home.  Now, after losing only one child, I wonder how in the world they survived so much loss.  I cannot even begin to imagine.

I recently read the story of Scott and Janet Willis's family in WORLD magazine.  Seventeen years ago, the Willises lost all six of their children when a piece of metal fell off a truck and punctured the gas tank of their minivan.  As they were being treated for severe burns at the scene, Scott said to Janet, "It was very quick.  And they're with the Lord now."  Then, as they were loaded into separate ambulances, he shouted out to her, "Psalm 34."  Janet, as she was surrounded by emergency workers, kept praying Psalm 34:1 out loud, "I will bless the Lord at all times; His praise shall continually be in my mouth," with the emphasis on will.  What a beautiful picture of trust in God, despite unspeakably devastating circumstances.

Andree' Seu, the author of the article, wrote this:  "Praise meets trauma where nothing else can reach.  Praise in the face of devastation releases blessings obtainable in no other way.  The presence of God is directly related to worship."

Would that I could continue to praise God, even if another tragedy befell my family.  And even as I ask God to give me that kind of faith, I pray that I never have to find out if I really have it.

Wednesday, December 28, 2011

Wacky Wednesday -- Indonesian Instructions

I haven't had a Wacky Wednesday post for awhile, but when I saw this on my brother's blog, I just had to share it.  My brother and his wife are missionaries in Indonesia, and they celebrated Christmas just like we did this past weekend.  One of the gifts they got for their little girls was this "Funny House".

It was actually a house in two pieces...You had to buy both pieces and then put them together.  But that's not the wacky part.  Here's the part that made me chuckle...the comments on the package.

Hmmmm....Don't you wish you could encourage your exaltation kid's cognitive abilities with a toy like this?  :-)

Sunday, December 25, 2011

Christmas 2011

Well, it's 9:00 p.m. on Christmas Day...and another Christmas is almost behind us.  And I have to say that I'm glad it's coming to an end.  Christmas is just not what it used to be.

It's not what it used to be when I was a little girl...when we used to have to wait until the grown-ups finished drinking their coffee after Christmas dinner before all of us kids (my brother and me and all our cousins) could start opening presents.  Can you believe they made us wait until the afternoon before we could open our presents?!  I never knew grown-ups could drink coffee so slowly!

It's not what it used to be when my girls were little...when Brad and I were almost more excited than they were about their presents.  My girls were not early risers, and we were usually awake on Christmas morning long before they were...anxiously waiting for them to get up and tear into their presents.

And it's certainly not what it was before Hannah left our earthly home for her heavenly home.  Certainly, the pain of her absence has moderated somewhat...the edges of the hole are not quite as sharp as they once were. The sadness is still there, but it's not crippling.

This year, more than ever, what has made me sad is thinking about how small our little family is.  There are only three of us, and it just feels so incomplete.  We were never supposed to be a family of three.  Brad and I had always wanted at least two children, preferably three.  Because of complications after Bethany was born, we were never able to have that third child, but that was okay...we were very content with our family of four.

We have a very large and loving extended family.  In fact, we celebrated Christmas with the Sullivan side of the family last weekend in Waco, Texas, at my sister-in-law's home.  We had a wild, raucous, wrapping-paper-ripping time of celebration while we were there.  We are planning a Christmas celebration with my side of the family when my brother and his family come home from Indonesia on furlough in mid-January.  We are really looking forward to that time with them, especially their two little girls, since we get to see them so rarely.

That meant that our Christmas celebration at home was very quiet this year, which is fine with us.  We live such busy lives, we really enjoy just having some relaxing time to be together as a family.  We decided to open presents on Christmas Eve this year.  We knew we'd be going to church this morning, and just didn't want to have to rush that family time together.

We did have a guest join us for the evening...Bethany's boyfriend, Brad.  I don't think he had any idea how much his presence helped us.  In fact, I don't think he had a clue.  The two of them have been friends for awhile now, and he's almost become part of the family.  For a few hours, it almost felt like we were a family of four again.  And I know it helped Bethany to have someone to open presents with.  We really had a nice evening together last night.  We also spent some time video-chatting with my brother in Indonesia on Skype, and that, too, helped our family not to feel quite so small.

As we walked into church this morning, I was struck once again by how small our family seemed.  We took our place in our usual pew, and I know it's weird, but I kept thinking about what a small amount of space we filled up.  I couldn't help but look at the families around us, all sitting together with their children, and looking somehow so much more "complete" than I felt we did.  I even felt like other people were looking at us and thinking, "Awwww...look at them.  Their family is so small without Hannah."  The sermon was pretty much lost on me, and I ended up fighting tears through the whole service.   By the time it was over, I had to get out of there.  I barely held it together until I got out into the parking lot...well, okay, I didn't really hold it together, but I gave it a valiant effort.  Sometimes, that's just all you can do.

We did have a really nice afternoon and evening...eating a delicious dinner of brisket with all of our favorite side dishes, watching movies, and playing games together.  So nice just to relax and enjoy being together.

The name of this blog is "The Sullivan Four."  That name actually comes from our email address, which for a few years now has been thesullivan4 at  It was from that address that I sent all of the emails that became the journal of Hannah's journey through cancer.  I started this blog after she went to Heaven, and I knew I wanted to use that name, but wondered whether it would really be more appropriate to call it "The Sullivan Three".  After all, weren't we now a family of three?

I didn't think about it long, though.  God quickly reminded me that even though Hannah is no longer physically present with us on earth, we are still a family of four.  There is a separation between us right now...but it is only temporary.  Hannah did not cease to exist on February 26, 2009...she is actually more alive than ever before...and we will be reunited with her one day.  So, even though it feels like our family is  small and incomplete right now, it won't always be that way.  We are still a family of four, "The Sullivan Four" if you will, and we will be throughout eternity.  And there is joy to be found in that.  Yet another reminder of what Christmas is all about.

Saturday, December 24, 2011

Christmas Eve in Heaven

I've thought a lot about what to write here on the eve of our third Christmas without Hannah.  But I've decided, for a change, not to write about our family.

I want to share the remarkable story of Hallie Green, a precious little girl who was born six days ago in Atlanta, Georgia.  About six months ago, Hallie's parents found out that she would be born with Trisomy 13, a genetic disorder which causes a multitude of birth defects.  In fact, 80% of babies born with Trisomy 13 do not survive their first year of life.

Let me share some of what Hallie's dad wrote on their blog yesterday, on Hallie's fifth day of life:

"I can't write a word until I thank all of you who have sent gifts to our house, texted, wrote on the Hope For Hallie Facebook wall, brought meals, and most importantly... prayed for our family and Hallie.

I've got to be honest, when I first saw the signs and hashtags labeled "Hope for Hallie," I was a little nervous. I guess I wanted to make sure people knew what to hope for. The prayers for a miracle of full recovery in Hallie's health have been a braver prayer than I honestly was willing to pray. Probably out of the fear that God might not "fix" her. I also didn't want to assume that Hallie's health was the indicator of God's goodness to us. We've seen God's goodness in so many ways, and greatly through each of you. The bottom line is this: please don't hinge your willingness to believe in God on Hallie's survival.

The reality is, she won't.

I want to follow that horrible sentence with this. Hallie's survival was never our "Hope for Hallie." We knew the day we heard the words "Trisomy 13," Hallie's life would be short, and maybe just hours/days if she survived birth. Our "Hope for Hallie" is that people would see life as a gift, and draw near to God. Based on your comments here, and based on the Facebook wall, I would say: mission accomplished. More people know Hallie's name within the last five days than will know my name throughout my entire life. Please don't feel sorry for Hallie...or us.

We will continue to enjoy every moment we are given with Hallie. We're heartbroken. Extremely heartbroken. We cry...probably hourly. God's purpose for Hallie does not exempt us from the pain of losing her. Don't be misled into thinking we're all laughing and celebrating all of the time.

Hallie is perfectly-made for us. She has a cleft lip and palate, no eyes, and we're pretty sure she's deaf. But she's still perfect to us. Her soul shines through her.

Finally, I'll leave you with a shot taken last night shortly after we arrived home from the hospital. One of our "Hope for Hallie" participants (and later found out, a close family friend) went to Bass Pro Shop to do some family photos with Santa. She was holding a "Hope for Hallie" sign in the photo. Santa asked about it, and was moved by our story. He wanted to help bring some Christmas cheer to our family. 9pm last night, after working a strenuous, all-day schedule, he drove the 30 miles south to our home to make us smile.

This single act of selflessness and love has got to be a top-three moment for me in my life. I would compare it to the "Move that Bus!" Extreme Home Makeover emotion. Incredible. He came with two elves (thanks Kristin and Lauren), and brought gifts for our girls and us, prayed for our family, and then lead us all in "Silent Night." I'll have a video of the girls' reaction up...well...soon. Santa, thank you for honoring our family in such a sacrificial way. (I see God's love all over this.)

Here is Santa loving on Hallie, our Christmas miracle...."

Isn't that just the most beautiful picture you've ever seen?

Hallie went to be with Jesus about 12:30 this morning, and is spending Christmas Eve with Him, which is soooo much better than spending it with Santa.

Please keep Chris and Katie Green, along with Bella and Farrah, Hallie's big sisters, in your prayers in the days ahead.  You might even write a word of encouragement to them on the "Hope for Hallie" facebook page.

Thursday, December 22, 2011

Thoughtful Thursday -- JOY...Because of HOPE

Wow...I have really dropped the ball when it comes to blogging!  Even though Christmas break officially began last Friday, I have literally been too busy to sit down and write.  And I really don't like to write just for the sake of writing.  There have been several times that I've done that, and I'm never happy with the results.  My posts usually begin with a "seed"...something that's planted in my mind that often takes time to grow.  If I rush it along, it just doesn't turn out well.

Anyway, enough excuses.  I'm hopeful that Christmas break will afford me the opportunity to share some of what's been on my heart over the last few weeks.

Tonight, my thoughts are full of families who are preparing to spend their first Christmas without one of their precious children.  The second and third (and so on) Christmases are difficult, but nothing compares to the deep grief families experience on that first Christmas without their child.  And it seems there has been so much loss this year.  As I write this, I see face after face passing through my mind...all children now living in Heaven with Jesus.  And their parents are left here trying to learn how to just keep breathing without them.

I'm here by myself tonight...Brad and Bethany are at the deer camp, doing some duck and squirrel hunting for the next couple of days.  I love evenings like this, when I have the house to myself.  I've got a Christmas candle burning, my iPod in the stereo on shuffle, Lacee piled up next to me sound asleep, and I may even get the fireplace going after while.  The living room is lit up by our "JOY" tree...a Christmas tree with nothing on it but JOY ornaments.  I love this tree...every ornament on it is special to me for one reason or another.  

But I can't help thinking about all of these broken-hearted physically heavy their grief is...all of them wondering if they will ever have JOY again.  I know that's how they feel, because I've been there.  Christmas of 2008 was filled with pain.  Even though Hannah was still here with us, we knew that without a miracle, it would be her last Christmas with us.  And we could see her body and mind deteriorating, bit by bit, right in front of us.  Christmas of 2009 was equally joyless as we tried to go through the motions of celebrating, but with our hearts so heavy, it was pretty much impossible.

But now, as we approach Christmas 2011, we are gradually finding our JOY again.  Not that we don't take steps backwards sometimes, but overall, we find ourselves moving forward.  And where does this JOY come from?  How can we have JOY when our family still has such a gaping hole in it?

The answer is simple, yet profound.  We have JOY because we have HOPE.  And isn't that what Christmas is all about really?  The Son of God coming to earth as a baby, living as a man, dying as a criminal, and rising again as a Savior ... all to bring us HOPE.  HOPE of forgiveness, HOPE of relationship with Him, and HOPE of Heaven when we die.  HOPE of being reunited with our children one day.  After all, He is the God of HOPE!

"May the God of HOPE fill you with all JOY and peace in believing, so that by the power of the Holy Spirit you may abound in HOPE."  Romans 15:13

Sunday, December 11, 2011

Ten Things That (Still) Make Me Smile

Before I start my list, I have to share some news....Our sweet little Glory Girl has met Jesus face to face.  She never actually had the opportunity to go home as they had hoped...recurring complications kept her in the hospital until angels carried her to her heavenly home early this morning.  I texted her mom with a message of encouragement this morning, not really expecting a reply.  Tears filled my eyes when I received this answer from Kerry, "I told Glory as I held her last night that she was going to be with Hannah."  And I thought about Hannah meeting Glory as she arrived and carrying her to Jesus.  What a beautiful picture of Glory in Glory!  Please keep Glory's family in your prayers as they face many difficult days ahead.

And now...back to my list.  Several weeks ago, I posted about Ten Things That (Still) Make Me Sad.  For quite awhile now, I've been wanting to add a new post..."Ten Things That (Still) Make Me Smile".  As a matter of fact, a couple of weeks ago I actually wrote the entire post, but then lost it when my laptop crashed.  Then basketball season began in earnest, and blogging has been on the back burner.

So, I want to make another attempt to share the "Ten Things That (Still) Make Me Smile", even though Hannah has been gone for almost three years now...

1.  Her complete lack of athleticism.  Hannah definitely took after me in her athletic ability.  Oh, she tried.  She played soccer, softball and even basketball when she was younger, but just running down the field or across the court required a supreme effort from her.  But the best thing was, she knew she wasn't an athlete.  I can't even picture her running without a smile on her face.  And that still makes me smile.

2.  Her obsessive-compulsive tendencies.  From the time she was little and lined up all of her bathtub toys by height along the edge of the tub...until she was old enough to drive and always had to have the volume on her radio set on an even number, her OCD made me smile.  And in her honor, I always smile as I set my volume on an even number, too (or a multiple of five, which was also okay with her)!

3.  Wearing her sweatshirts.  I always enjoy wearing her sweatshirts, even though I'm probably too old to wear clothes from Aeropostale.  It's almost like getting a hug from her, and that makes me smile.

4.  Her tendency to always lose games.  No one enjoyed family game night more than Hannah.  But no matter whether it was Mexican train dominoes, Uno, Phase Ten, or Sequence...she invariably lost.  I never could figure out why...she very well may have been the smartest one in the family...maybe she just didn't have that killer instinct.  But the fact that she was always ready to play still makes me smile.

5.  Sunflowers.  Of all the bedrooms Hannah had over the years (we moved often when the girls were growing up), my favorite one had a sunflower theme.  We painted the walls a sunny yellow, put up a sunflower border, and got a sunflower comforter.  It was such a pretty room, and ever since then, sunflowers have made me smile.

6.  Donating blood.  Over the year of Hannah's illness, she was the recipient of innumerable units of blood products.  I am so grateful for each and every blood and platelet donor who helped contribute to the length and quality of her life.  And because of that, I donate blood every time I am eligible.  Donating blood is a privilege that never fails to make me smile. 

7.  Her irrational fear of geese.  When Hannah was little, we used to go to a park in Fort Smith where we could feed the geese and ducks.  We'd bring a loaf of stale bread and spend the afternoon.  One time, Hannah was holding a bit of bread between her fingers, and a goose nipped the very tips of her fingers as it took the bread from her.  She ran to me screaming, and from that point on, she was terrified of geese.  We always laughed about that, and the thought of it still makes me smile.

8.  Our collection of JOY stuff.  A couple of years ago, I decided to start collecting JOY items, as a reminder of the JOY Hannah is experiencing in Heaven right now.  Her former bedroom is now our JOY room, and it is our goal to completely fill it with JOY stuff.  We also decorate for Christmas with JOY, which helps ease some of the pain of experiencing the holiday without Hannah.  In fact, last Sunday afternoon as we were decorating our Christmas tree, we realized that we had far too many JOY items to put on one tree.  So, Bethany and I ran out to Wal-Mart and bought another tree.  Now we have one tree with all of our traditional family ornaments, and one tree that is completely covered with JOY.  Many of these JOY items have been gifts from very special friends, and each and every one of them makes me smile.

9.  Her love of cheesy Christmas music.  Every year, when it was time to decorate the tree, Hannah would turn the TV to the satellite channel that played the classic Christmas know, Bing Crosby, Frank Sinatra, Burl Ives, Brenda Lee.  And she would turn it up loud, so loud we could barely hear each other talking.  Hannah always was what some people call an "old soul"...and her love of cheesy Christmas music still makes me smile.

10.  Seeing Hannah in Bethany.  When my girls were growing up, they could hardly have looked more different.  Hannah was tall, somewhat stocky, with brown, curly hair.  Bethany was average height, very slightly built, with nearly white, wispy hair.  Hannah had a rather lumbering walk (see #1 above), while Bethany skipped lithely on her toes everywhere she went.  If you didn't know they were sisters, you would probably never guess.  But now that Bethany is sixteen, I occasionally see glimpses of Hannah in her.  Something about the way she walks down the hall, something about the tilt of her head, something about the way she laughs...for the briefest of moments, I'll see or hear Hannah.  And that never, ever fails to make me smile. 


Tuesday, November 29, 2011

Tell About It Tuesday -- Another Awesome App!

If you've followed this blog for awhile, you know I'm a big fan of Ann Voskamp's book "One Thousand Gifts".  Her basic premise in this book (written in the most beautiful prose I've ever read) is that true joy comes through thanksgiving.  And I don't mean "Thanksgiving" in the once-yearly event where we gorge ourselves with rich food, watch football, and spend a few brief moments being thankful for our blessings in general.  I mean a day-in, day-out lifestyle of thanksgiving, where we recognize and thank God for each and every blessing He brings into our lives, no matter how tiny or seemingly insignificant.  The author describes how her life was transformed by simply listing every blessing in her life, up to 1,000 of them.  She then started her list all over again.

Reading this book inspired me to start my own list of 1,000 things that bring me joy, and I've even shared many of them on this blog.  It can be so easy to get caught up self-pity after suffering a great loss in life, especially when you tend to be an Eeyore like me.  This list has served as a reminder to me to look for and appreciate all the good things in life....and we truly are surrounded by them.  I've kept my list in a little notebook that I carry in my purse, and if I'm perfectly honest, I often miss writing things down because it's just too much trouble to dig it out from amongst all the other junk in there and then find something to write with.  As a result, my list has suffered from neglect.

But...would you believe there's an app for that?  It's called "One Thousand Gifts" (what else?) and it's waaaay better than a list scrawled in a notebook.  When you first open it, you get a quote from Ann's book (such as "Wherever you are, be fully there"), and then you move on to your list.  Adding an item is as simple as typing it in, and here's the coolest can add a photo!  So you not only have your list, but you can have pictures of everything on your list.  You can also easily share your captured gifts to Twitter, Facebook, and Flickr.  How fun is that?   As soon as I have time (not sure when that will be!) I'm going to transfer my entire list into this app, and then, hopefully, I will do a better job of keeping up with it. 

Oh, and did I mention that this app is free?  Yes, FREE!  At least it was when I downloaded it a few days ago.  I'm not sure if it's available on the Android platform or not, since I'm an iPhone girl.  And now....I've got a few minutes.  I think I'll go work on my list...

Thursday, November 24, 2011

Glory Girl Update

Here's the latest update on sweet little Glory, posted by her Mom on the "Fight Like a Glory Girl" Facebook page a couple of days ago...

"We could never thank all of you enough for your encouragement, thoughtfulness, and mostly your prayers. I think a little of all of our hearts are breaking today. Every time I get negative news from Glory's doctors, I mourn another piece of the idea I had the moment I found out I was pregnant with her...the idea that she would grow up playing with her sissy...the idea that she would graduate high school, get married, and have babies of her own...even the idea (although possibly in a less conscious manner) that I would die before her. Over the past year, those hopes have been less and less as Glory fights an uphill battle.

I generally do not mention Glory’s medical diagnosis in detail or dwell on her list of defects simply because it is not what defines Glory. What defines her is her smile, the way she loves, the way she is loved by those around her, the way she talks with her eyes, the way she thinks her sissy is the best person in the world… I could go on and on. But I want to list her defects now because I want you to understand how strong (medically) she is… Hypoplastic Left Heart Syndrome, Double Outlet Right Ventricle, Atrioventricular Canal, and Heterotaxy are her heart defects. She was also born with esophageal atresia (the upper portion of her esophagus is not connected to her stomach), tracheophageal fistula, asplenia (she was born without a spleen), and bronchomalacia (her left lung is very underdeveloped and weak). It is important that you understand that she should not have survived one week. I want you to know that her life today is a miracle. I wish she was going to be with us for years and years, but the likelihood of that is getting smaller and smaller. It is worth mentioning here that I do believe that God can heal Glory at any time, but the world we live in is not perfect, and only He knows the future. Glory has already accomplished more in her 16 months than most of us do in 50 years..I could not be more proud of her. Please join me in celebrating her life in the days ahead (even though we don’t know how many)…she is here now…she is still smiling. None of us know what day is our last, so we are going to continue on and enjoy every moment we have with Glory Girl. I could not feel more blessed to be her mother and spend even one more day with her. She is, and has always been, a result of your prayers.

The picture is of her today enjoying watching The Polar Express with Mo-Mo. She has not felt well the past few weeks, but if she has any energy to do anything, she is smiling. :) Please pray for our transition home, for Glory to be happy and comfortable, for us as we make daily decisions about Glory’s care, and for Eliana.

Three things will last forever – faith, hope, and love – and the greatest of these is love. I Corinthians 13:13."

As we all celebrate Thanksgiving today, let us all hug our family members a little bit tighter and squeeze every bit of joy out of our time together.  Let us be truly thankful for the blessings of faith, family, and the hope of Heaven. 

Tuesday, November 15, 2011

Tell About It Tuesday -- There's An App For That!

Wow....Two posts in two days!  That hasn't happened in awhile! 

Today I wanted to share with you my two new favorite iPhone apps.  So if you don't have an iPhone, I guess you can just move on to the next blog....or maybe reading about these apps just might make you decide to take the plunge and get one!  I suppose these may be available on the Droid platform, but I really have no idea.  All I know is that these are two terrific apps that you might enjoy.

The first is called PrayerMate, and it is a great way to help you organize your quiet time.  If you're like me, you have LOTS of people on your prayer list.  In particular, I have a long list of people with cancer, and a long list of people who are grieving the loss of their children.  I used to keep this list written on a white board, and tried to pray through it each day.  It was rather unwieldly, and my prayers for each person were necessarily brief and to be honest, somewhat shallow, as the list just seemed to continue to grow each day.  I would also feel bad when a friend would ask me to pray for someone, and I would agree to do so, only to find that by the time I got home to my white board I had forgotten their name!  Or maybe I'd pray for them a time or two, and then a new prayer need would come along and I would forget all about them.

Well, this neat little app helps keep me straight.  It allows you to enter categories and then put names or items under each category heading.  For example, I have categories like "My Family, My Church, Unbelievers, Missions, Those with Cancer, Those with Illnesses, Those Who are Grieving, My Country", etc.  Then, under each category I have names or other items.  For example, under "My Church", I have listed by name each staff member, then each ministry of the church, such as Celebrate Recovery, Anchor of Hope, the youth group, Upward Soccer, etc.  Once you get all the information entered, you can set how many items under each category you want to pray for each day.  For example, I have fifty-one names under "Those with Cancer", so each day, I have it set so that three of those names will come up.  I can't possibly pray well for 51 people with cancer each day (in addition to other people on my list), but I certainly can pray for three. 

After you have all the information entered and the number of category items you want to pray for each day set, the app is very easy to use.  It works like flashcards.  You simply swipe through, card by card, and pray for each one.  It's also very easy to add new categories and new names.  So now, when someone stops you in the hallway at church and asks you to pray for their mother who's just been diagnosed with cancer, you can enter her name into your PrayerMate app, and there you go!  No more forgetting those important prayer needs.  Oh, and did I mention that this app is free?  Hang on....never mind.  When I got it, it was free, but I just checked the app store and it is now $2.99.  Still...that's pretty close to free.

The other app I just found recently and I haven't even been using it a full week yet....but I love it!  This one is called Fighter Verses, and it is also $2.99.  This is a fantastic app if you want to develop the discipline of Scripture memorization.  It is amazing!  You can choose to memorize either one or two verses a week, and it provides you with 520 pre-loaded verses, which is two complete five year collections of verses.  You can also add any verse you want, just by putting in the reference.  You don't even have to type it in there.  There are five different Bible translations you can memorize in ESV, NIV, NASB, KJV or a Spanish version.  It also has built-in quizzes, where they put blanks in the verses and you tap them to fill them in or select the missing word from a word bank.  How many of you remember trying to learn memory verses in Sunday School by writing them out, erasing a few words, and trying to say them?  Well, this app does that for you! 

There are even verses selected just for children to memorize that include visual cues, AND if you use the ESV version, there are songs to help them learn them.  Where, oh where was this app when my children were in AWANA?  You can also set your weekly verse as the lock screen on your phone, so you see it everytime you turn on your phone.  Pretty awesome, if you ask me.  I am really loving this app. 

So, there you go...PrayerMate and Fighter Verses.  Six bucks well spent, if you ask me.  I'll let you go now, so you can go check out the App Store!  Happy downloading!!

Monday, November 14, 2011

Monday Mourning -- Ten Things That (Still) Make Me Sad

As we approach our third holiday season since Hannah went to Heaven, I've been dealing with the now-familiar wave of grief that always seems to come around this time of year.  After the loss of a child, there are the big, obvious things that make you sad, like the holidays, your child's birthday, the anniversary of their death, or their empty bedroom ... but there are also little things, things that would seem completely inconsequential to others, but things that must be dealt with on a daily, or nearly daily, basis. 

Since I missed this month's Ten on the Tenth (I'm going to blame that on Bethany's basketball schedule), I thought I would list ten things that still make me sad on a daily basis, even though it's been nearly three years since Hannah went to Heaven. 

1.  Grocery shopping -- Hannah loved Chex Mix and green olives...two things that no one else in the family eats.  I used to buy them just for her.  She would sit and eat green olives right out of the jar like they were candy.  As her health deteriorated and her sense of taste was affected by radiation and chemotherapy, her tastes dwindled to basically three things:  Oranges, Michelina frozen fettucini, and Special K with Red Berries cereal.  It was not uncommon for her to eat a bowl of cereal, some fettucini, and an orange in the middle of the night in the last month of her life.  It makes me very sad to go grocery shopping and not buy any of these things ... I will actually avert my eyes as I walk down the aisles so I don't have to see any of these items.

2.  Seeing her high school friends -- I was at our high school football game on Friday night, and watched as her two best high school friends walked by together, laughing and talking.  I always feel such a tug in my heart whenever I see her friends from school, knowing that they are home from college for the weekend, spending time with their families.  Really makes me miss my girl.

3.  Getting out three plates for dinner -- Even after almost three years, I never pull plates out of the cabinet without an awareness that I'm only getting three of them instead of four.  The evening we came home from the hospice center after Hannah's death in February of 2009, there was a nice, warm supper waiting for us on the counter from a sweet family in our Sunday School class.  Amazingly, we were actually hungry, not having eaten all day, and we decided to sit down and eat.  I opened up the cabinet and pulled out four plates.  I was pulling four forks out of the silverware tray, when Brad pointed out to me what I was doing.  The heartache I felt as I put one of those plates back into the cabinet is repeated every time I get out three plates for dinner.

4.  Seeing mothers and daughters together -- Whenever I see mothers and their nearly-adult daughters together, especially shopping, I feel that familiar pang.  Hannah and I were great shopping buddies.  Of course, she loved it when we shopped for her, but she would also encourage me to shop for myself.  She would find outfits for me to try on, and waited patiently while I changed into them and modeled for her.  She actually helped bring my wardrobe into the 21st century from the 1990s 1980s.  I miss those days.

5.  Going to Bethany's school events -- Bethany is very active in school and church activities, and I love watching her play basketball, high jump, and cheer.  It's one of my favorite things to do.  But there's always a sadness that Hannah is not there to cheer her on.  I know she'd be in college now and would miss a lot of these events anyway, but she'd be following her activities closely, and would come to anything she was able to.  Last week Bethany played in a basketball tournament at Ouachita Baptist University, where Hannah would have been a student, and it would have been so much fun for us to have watched those games together.  Hannah was not athletic, and she knew it, but I think that made her appreciate Bethany's athleticism even more.  She was definitely her sister's biggest fan, even coming to watch her play basketball in the last month of her life, when she couldn't even walk without assistance.  It makes me sad that Bethany doesn't get to hear her voice in the stands cheering her on.

6.  Sharing new things with her -- It seems like there's always something I want to tell her or show her, like the beauty of the changing leaves, or a new song by Switchfoot, or the new comforter I found on sale at Kohl's yesterday.  I want to show her how much the trees we planted have grown, and show her all the changes that have taken place on her high school campus in the past couple of years.  And it seems that if I ever say something like, "I wish Hannah could see this", some sweet, kind, well-meaning person will say, "Oh, she already knows about it."  And that's probably true (although with all the beauty surrounding her, does she really pay attention to what's going on here on earth....I'm not really sure about that), but it's not especially helpful when I'm missing her physical presence.

7.  The grave -- Thankfully, I don't have to deal with her grave on a daily basis.  I know that many bereaved parents get a great deal of comfort from visiting their child's grave, and that is wonderful.  There is no comfort for me there...only pain.  Her grave is located in a cemetery near the Sullivan family deer camp, which is where we often have family gatherings.  It is excruciating to drive right past her grave on the way to a family get-together.  Some completely illogical part of my brain feels like we ought to stop, pick her up, and bring her with us.  It makes me very sad that we can't.

8.  Changing seasons -- For some reason, as one season fades into another, the sadness hits me again.  I think maybe it's because the changing seasons are a sign of time passing ... stretching out the number of days since I last saw her, talked to her, held her hand. 

9.  Her cousins -- Hannah was the oldest of all her cousins by about 3 1/2 years.  As a natural-born leader, she was adored by all her younger cousins.  She kept them all in line, squelched all the bickering, and served as director and narrator of the annual cousin nativity play at Christmas time.  It absolutely breaks my heart to know that three of her cousins will never remember her ... one was almost two when she died, one only three months, and one yet unborn.  Their parents have done a wonderful job of  making sure they know who Hannah was, but it just makes me so sad that they never had the opportunity to know her.

10.  While We're Waiting -- Whenever we have a While We're Waiting event, I always wish I could sit down with her and tell her all about it, and it makes me sad that I can't, because I know she'd enjoy hearing all about it.  But then it hits me ... While We're Waiting would not exist if she were here.  The Anchor of Hope Cancer Ministry would not exist if she were here.  The lives that God has used these ministries to touch would remain untouched. 

So, why write about the things that make me sad?  The other day, I found this quote by Ed Welch: “I find that there are three levels of clarity. When I only think about something, my thoughts are embryonic and muddled. When I speak about it, my thoughts become clearer, though not always. When I write about it, I jump to a new level of clarity.”  Wow, can I relate to that quote! 

I've been feeling the need lately to clarify for myself what exactly are the things that trigger my sadness.  Maybe by specifically identifying them, I can be better prepared for their onslaught.  And maybe there's someone reading this who can relate ... who might read these things and realize, like one of the Moms who came to our last While We're Waiting Weekend, that they are not the only one who deals with this kind of stuff on a daily basis. 

I've been faciliating the Beth Moore study "Patriarchs" for the last several weeks at our church.  In last week's video, she talked about how she had been the victim of sexual abuse of a child, and finally had the opportunity to confront the perpetrator.  She described being dismayed and broken-hearted by the fact that he just didn't seem to "get it."  He seemed to have no idea (or no concern) how her life had been impacted by his actions.  She concluded by stating that even if no one else "gets it", God does.  Wow!  What a comfort that was to me!  Even some of my most illogical thoughts and feelings, He "gets."  And even though those things still bring sadness to my heart, it sure helps to know that He cares and understands!

Tuesday, November 8, 2011

Tell About It Tuesday -- The CureSearch Walk

Ahhhhhh....It's Tuesday evening and I have nothing to do and nowhere to be!  Bethany was supposed to babysit an extremely active 2-year-old boy for a few hours at our house this evening, and honestly, I've been dreading it all day.  She's done this before, and he's a sweet little guy.  But when you're not used to having a two year old around, and you have no toys for two year olds, and when the two year old's parents are not around to take care of him...and did I mention that he is a extremely active two year old...well, let's just say when I found out late this afternoon that the little fella was sick and wouldn't be coming, I breathed a sigh of relief.  OK, maybe I even did a little happy dance.  A whole evening with nothing to do!

Nothing to do but blog, that is.  Life has been so busy lately, it's been hard to get on and write regularly and I'm hopelessly behind on my blog reading.  Basketball season officially got underway last night with the start of a tournament at Ouachita Baptist University.  Bethany's team played at 8:30 p.m. (getting us home around 10:30 p.m.) and they won.  Lucky us, that means we get to play tomorrow night at 8:30 p.m.  And win or lose, we'll play again Thursday night.  Then there's the start of football playoffs Friday night.  Busy, but fun.  And I am so thankful that Bethany has sufficiently recovered from her concussion to be able to play a little bit last night.  She was not quite on her game, but she'll get there.  God is good.

I've been wanting to share a little bit about the CureSearch Walk for pediatric cancer awareness and funding that we were privileged to be a part of on October 15th.  This was the first time this event has ever been held in Little Rock, and we felt it was a huge success. 

The morning began at Murray Park in Little Rock, where a ceremony was held to honor the young cancer survivors, and then we walked a 5K.  The route took us over the Big Dam Bridge and back.  As you can see, the weather was perfect!

When we reached the end of the Big Dam Bridge, there was a banner for all of us to sign, either in honor or in memory of our children.  Just take a look at how many children, just from Arkansas, are touched by cancer. 

We walked with our friends, Bobby and Amy, whose 5-year-old son Joel went to Heaven in August after a battle with pediatric brain cancer.  We got to see several of the families whose children were fighting cancer at the same time that Hannah was.  It was wonderful (if somewhat bittersweet) to see those kids growing and thriving.  We were also able to visit with Hannah's oncologist for the first time since we walked out of Children's Hospital over two years ago, and it was great to visit with him outside of a hospital setting.  He introduced us to his wife, and said that Hannah was the "most beautiful girl he had ever seen."  Maybe he says that about all of his patients, but knowing him, I really don't think so.  Let's just say I was glad I had my sunglasses on. 

Over $50,000 was raised for pediatric cancer research that day.  We've got a long way to go to catch up to the Susan G. Komen Race for the Cure, but it's a start.  You know...the breast cancer folks have done an incredible job of raising awareness and funding for their cause.  And it's a great cause!  I don't think you can find anyone who is not aware of the prevalence of breast cancer in this country.  But...I can not tell you how many times I've heard someone (including myself) say, "I had no idea how many children were affected by cancer until my child was diagnosed with it."  It's time to get the word out.  We are looking forward to being a part of the CureSearch Walk for years to come!

Monday, November 7, 2011

"While We're Waiting Weekend" Wrap-Up

"Now to Him that is able to do exceedingly abundantly above all that we ask or think, according to the power that worketh in us, unto Him be glory in the church by Christ Jesus throughout all ages, world without end.  Amen."  Ephesians 3:20-21

I think I quoted that same Scripture after our last "While We're Waiting Weekend" for couples, but I just had to use it again.  Because once again, God did exceedingly abundantly above all that we could ask or imagine over the course of this past weekend.

You might recall from my post a couple of weeks ago that this weekend almost didn't happen.  We were this close (I'm holding my thumb and forefinger a couple of millimeters apart) to canceling this fall's retreat and just waiting until the spring.  We had a few couples registered, but things just didn't seem to be falling into place.  Several couples who wanted to come had other obligations and were unable to attend.  We host couples were all very busy with other things.  Maybe God was telling us that this just wasn't the right time...that we needed to just be patient and wait until the spring.  We were even bold enough to give God a time limit...if no one signed up in the next 24 hours....there would be no "While We're Waiting Weekend" this fall.

Well, I think God kind of chuckled at that, because within 24 hours, a sweet young widowed mom signed up, and then 24 hours later, He sent another couple.  Yes, we got the message loud and clear, and the weekend was on! 

And what a weekend it was!  

I can never adequately express everything that happened this weekend in words, so I'm going to attempt to illustrate some of it in pictures. 

First...Family Farm, our beautiful "home away from home" for the weekend...

Our hosts and hostesses...

Our kids' pictures...

Session time, both inside and outside...

Visiting the animals on the farm...

Going on a hay ride...

Trying out the land skis...Yes, the guys won this time!

Riding the two zip through the woods and one over the pond!

Taking a break and enjoying the absolutely beautiful weather...

And enjoying a gourmet dinner prepared by Chef Franklin.  Here he's making Bananas Foster for dessert....

But as great as all these activities were, they could not hold a candle to the highlight of the weekend.  Remember the young widowed mom I mentioned at the beginning of this post...the one who God used to make this whole weekend happen?

Over the course of the weekend, she realized that although she was a Christian, she had not been growing in her faith.  She had also never been baptized, and she expressed a desire to be baptized as a symbol of her new commitment to Christ....and she didn't want to wait.  Isn't God amazing?  So on Sunday morning, after a time of praise and worship, we all walked down to the pond, where Stan May and Brad baptized her in the chilly waters.  I share these pictures with her permission.

After the baptism, we had an impromptu surprise party for this sweet mom, whose birthday is coming up this week.  We were not only celebrating her birthday...we were celebrating her new commitment to her Lord!

One of our dads also rededicated his life to the Lord while we were there, and I believe every one who came left there with renewed hope for the future and a commitment to honor our children and our Lord by living well while we're waiting to be reunited with them.  Just take a look at these smiling faces!

Our next While We're Waiting Weekend for Bereaved Parents is scheduled for April 20-22, 2012  For more information or to register, just go to the While We're Waiting website.  Also, please help us spread the word if you know someone who might be interested in attending an event like this!   

Thursday, November 3, 2011

"While We're Waiting Weekend" Eve

Tomorrow night will mark the start of our second "While We're Waiting Weekend" for Bereaved Parents.  We'll be kicking things off with dinner around 5:30 -- a group of strangers with nothing in common but the indescribable pain of losing a child.  Well, no...that's not really the only thing we have in common.  We also share faith in God -- a faith, that for many of us, has been shaken and tested by our life experiences.  We have lived I Peter 1:6-7:  "In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials.  These have come so that the proven genuineness of your faith -- of greater worth than gold, which perishes even though refined by fire -- may result in praise, glory and honor when Jesus Christ is revealed."  (Thank you, Robyn, for reminding me of this passage!  Your timing was perfect!) 

I want to ask you to pray for this weekend.  First of all, that Jesus Christ would receive the praise, glory, and honor as described in I Peter 1:7.  Secondly, please pray that this weekend would be a time of refreshment, renewal, comfort, and encouragement as we come together to share our children's lives and to learn from each other.  Even though we will be arriving as strangers, I believe we will leave as dear friends.  Finally, please pray that God will take care of all those little details that can arise during an event like this.  We want to be able to keep the focus where it belongs...on Him and on our guests. 

Every time we have one of these While We're Waiting events, I have trouble sleeping the night before.  My heart is always filled with a combination of excitement, anxiety, anticipation, inadequacy, exhilaration, and even some fear.  Sounds pretty conflicted, huh?  So I just have to remind myself that I am but an earthen vessel, and that the excellency of the power is of God, and not of me...a little paraphrase of II Corinthians 4:7.  Knowing that you are praying will help me with "Thanks" in advance for your prayers!

Monday, October 31, 2011

One Of Those Weeks....

Have you ever had one of those weeks?  You know, the kind where you just try to make it through each day, thinking there's got to be some light at the end of this crazy tunnel?  Well, our family had one of those last week.

It all started with a phone call I received from my husband last Sunday evening.  Our Sunday evening schedules are rather crazy...I have handbell practice, my husband is partipating in a study of the book "Radical", and Bethany has been taking part in block parties which have been sponsored by her youth group around the city of Hot Springs.  All of these events start and end at different times, so we end up taking three vehicles to church.  I had already arrived home and was looking forward to a relaxing remainder of the evening when I received said phone call.

I knew it was Brad calling by the ring tone, but when I said "Hello", all I could hear was a bunch of commotion in the background.  As I was trying to piece together what I was hearing, he said, "Hey, Bethany hit her head at the block party, and she's kind of confused."  About that time I figured out what the commotion was...It was Bethany, crying, and saying, "What's going on?  What's happening to me?"  After a few seconds of this, I told him to bring her to the hospital, and that I would meet them there.  He quickly agreed and we hung up.

I changed out of my pajama pants (so much for my relaxing evening) and whipped the car out of the garage.  I drove to Hot Springs with my flashers on, and Bethany's terrified voice echoing in my ears.  Thankfully, I am not someone who "freaks out" easily, and I am able to remain calm even when I'm extremely worried about something.  This ability has served me well over the last few years!  I arrived at the emergency room at the same time they did, and hugged her in the parking lot.  She was scared and completely and totally disoriented.  She had no idea why we were going to the hospital or what had happened to her.  We got her checked in, while she asked me questions like, "I've been out of town, right?", "Did I miss school today?", and "Am I on break?", all through tears.

As we sat in the waiting room and then later went to a room, she began to calm down a little bit.  She showed off her new "watch" (her hospital bracelet!), told all the nurses that she had strep throat, and talked about the dinosaur on her finger (the pulse-ox device).  She also insisted that she had been to the eye doctor that day.  As far as what had happened to her at the block party, she still had no idea.  The doctor recommended a CT scan, which thankfully revealed no bleeding or other problems.  After a couple of hours, she was a little more oriented, and they sent us home with a concussion diagnosis, and directions to wake her up every few hours, watch for signs of seizure activity, and to be sure she could move both sides of her body.

OK......With those instructions, I wasn't about to let her out of my sight, so she slept with me that night, while Brad camped out in the guest room.  I didn't have to worry about waking her up every few hours, because she basically didn't sleep at all.  She talked and talked all night...some of it making sense, and some of it not.  By the wee hours of the morning, she finally conked out.

I kept her home from school on Monday, and discovered through our conversations during the course of the day that not only did she not have any memory of the incident the night before, she had very little memory of the events of the last two weeks.  She did not remember going to Hannah's grave on her birthday or spending the night with Brittany at the dorm that night.  A couple of weeks ago she had hyperextended her big toe in basketball practice and had even been on crutches for a few days...she had no memory of any of that. 

On Tuesday, she went back to school with a splitting headache, only to be faced first period with a Trig/Pre-Cal test that she had no memory was coming up.  Nor did she have any memory of learning any of the material covered on the test.  Needless to say, she bombed the test!  On Wednesday morning, she went back to school, only to come home in the early afternoon with a fever of 102 degrees. 

We called our doctor, who told us to immediately bring her in.  He explained to us the possibility of meningitis occurring after a blow to the head, due to leakage of cerebrospinal fluid.  He sent us back over the hospital for another CT scan, which thankfully was good, and did bloodwork, which did not indicate a high white blood cell count, a harbinger of meningitis.  So back home we went, with instructions to return the next day for more blood tests.

Her fever was still high on Thursday, her head still pounding, but again her white cell counts were good, so the doctor told us she probably had a very poorly-timed virus, completely unrelated to the concussion she had sustained on Sunday evening.  Boy, was he right.  Over the next 36 hours, the fever morphed into a full-blown stomach virus, almost sending us back to the ER on Friday night to be treated for dehydration.  We decided to give it one more night, and bring her in Saturday morning if she was still sick...but thankfully, she woke up and asked for toast that morning...and things have been on the upswing ever since.

So why am I spilling this whole story to you?  I guess it makes me feel better to vent about the week.  Like I said, I'm not a "freaker-outter"...I tend to hold my emotions very tightly inside during a crisis situation.  And this week felt like one crisis situation after another.  Seeing Bethany lying in a hospital bed not making sense, having brain scans done, and wondering what was going to happen next brought back some all-to-familiar feelings.  It feels good to let some of that out!

But, in spite of all the nerve-wracking events of the week, some good things came out of it, too.  For one thing, we have two clean CT scans of Bethany's brain....a nice reassurance after you've lost a daughter to a brain tumor.  It also brought our incredibly busy lives to a grinding halt, and gave us the opportunity to spend some quality time together.  Bethany and I had some great conversations this past week, and once the initial crisis passed, we had some really good laughs about her behavior immediately after the concussion.  And it was a great reminder of what I talked about in my last post about Glory....that we need to appreciate every moment we have with our loved ones.  Life can change in the blink of an eye. 

Thankfully, our Savior is with us every step of the way!

Friday, October 28, 2011

A Visit with Glory Girl!

If you've been following my blog for the last few months, you've already "met" Glory, a precious little girl who was born with extensive heart problems.  She has spent most of her 15 months in the CVICU at Arkansas Children's Hospital, with just a few months at home (actually a place they've rented near the hospital).  This picture was taken the day before she had her most recent heart surgery.  Is that not one of the most precious faces you've ever seen?

Well, I had never actually met Glory or her mom, except online, and decided that a workshop in Little Rock on Monday would give me the perfect opportunity to stop by for a visit.  I was nervous about going...after all, I had not been back in the main part of Children's Hospital since the day I left there for the last time with Hannah.  And I was afraid I would be in the way...I knew that Glory had had a lot of complications since her last surgery and had been running a high fever for the last couple of days.  And I'm an introvert by nature...meeting new people is really not my thing.  I wasn't really sure why I was going...just that I really wanted to meet this mother/daughter pair who has inspired me so much.

Turns out that my fears were completely unfounded.  Glory's mom, Kerry, immediately put me at ease.  We hit it off as if we'd know each other all our lives.  Once again, I experienced that bond that forms between believers who have walked similar roads.  We talked about what it's like to become isolated from the world as you spend weeks beside your child's hospital bed, what it's like to not have any idea what the next day (or the next minute) holds, and what it's like to be a parent of a child who has an uncertain future. 

We both agreed that even when life seems to be spinning completely out of control, there is peace to be found in trusting the Lord.  And then she said something that most people could never possibly understand.  She said something along the lines of, "Sometimes I look at my life and I wonder how in the world I got here (gesturing at the ICU room around us), and sometimes I look at my life and feel like I'm the luckiest person in the world." 

Here we were, standing beside her little Glory, who has tubes and monitors running from every conceivable spot on her body, burning up with fever, and she says she feels like the luckiest person in the world?  How can she say that?  I think (and I don't mean to put words in her mouth), but I think it's because she has been given The Gift.  The Gift of appreciation.  The Gift of opened eyes.  The Gift of awareness.  Appreciation of every moment with those you love.  Eyes that have been opened to the beautiful things of life (even in the middle of ugliness).  Awareness of the things that are truly important and an ability to see beyond those things that are not.  When you have The Gift, it is possible to feel like you are the luckiest person in the world, even when circumstances would make that seem impossible.  Thank you, Kerry, for that reminder.

Here is Glory today, with her Halloween bow in her hair.  I felt so fortunate that while I was there on Monday, she woke up and smiled at me repeatedly -- a total stranger to her -- giving me several peeks of that little sticky-outy tongue even through all the tape and tubes.  She's a sweet, happy baby, completely unaware that her life is any different from any other fifteen-month-old.  She is loved, and she knows it. 

Her life is different, however.  As her name indicates, her life brings glory to God.  Her smile and her Mom's smile are proof of His love and faithfulness.  And that's why Glory's mom can say that she's the luckiest person in the world.

"But thou, O Lord, art a shield for me; my glory, and the lifter up of my head."  Psalm 3:3