On the Beach, On the Go

The main reason we headed to Gulf Shores this year was so that Clayton could use the beach power chairs we found there for rent.  He could use some more training on the driving (they drive a little differently than his regular chair), but all in all, it was definitely a great thing--our backs especially appreciated it.  He is simply to big to carry very far, and definitely if you are walking in sand!  I did a little videoing of him driving so that I could share for others who are interested in trying them out:

You'll have to excuse the video quality--my videography skills are lacking!

Even The Hard Things

I still remember sitting in the pump room.  It was the early morning hours of the 28th and I had been by Shawn's bedside since around five that previous afternoon.  The doctors urged me to take a break, assuring me Shawn was stable enough for me to be gone for a short time.  I reluctantly went, knowing my body needed the release, also aware that Clayton needed me to keep making milk.  It was the first time I had been alone since being told my baby would die.  I sat there in the quiet of the room, listening to the ho-hum of the breast pump.

Making milk for babies who were too sick to even contemplate eating.

Making milk for a baby who wouldn't be alive in just a few short hours.  

And as much as I held onto the faith that God could heal him at any moment, I started visualizing my son's funeral.  How in the world do you go about planning a funeral for your child?

The one you just welcomed into the world?

The one you haven't even gotten to know yet?

And to this day, the devil plays tricks on me.  Tells me that since I dared to go there in my mind that night, my faith cracked, and in turn the Lord allowed Shawn to die.  Talk about mind games!  I guess as a parent, you just wonder over and over "WHAT COULD HAVE I DONE DIFFERENTLY?"  I look back at those moments and wonder if the Lord thought I was giving up?  I suppose it was the same battle I fight with Clayton's healing, just on a more acute level.  

I cycle through this emotional guilt and then my brain puts on the brakes--I KNOW the Lord works in higher ways than this!  As my friend Karen reminded me:  "Romans 8:28 is STILL IN THE BOOK."  All things, [even the hard things] are working together for the good of His people!  And what a celebration it will be when we see the good of sufferings like these revealed!    

I guess my time alone that night/morning was what you'd call a gut-check.  I could either simply collapse under the emotional weight of it all, or I could go make the most of what I had been given.  I had to trust the Lord would carry us through.  I left that pump room determined to love on my son as much as possible in the time I still had with him.  And that is what I did.  

Back to [Home] School

Yesterday, we started back on our school routine with a new student in tow.  This will be our first year to officially include Jackson in our "classroom."  Last year I let him participate if he was interested, but didn't force the issue.  But with his interest in reading and letters/numbers growing, I thought it was the perfect time to add him into the mix. 

He was pretty excited to get his own notebook and have his own lesson.  I let Clayton "help" Jackson with his lesson, and then in turn Jackson got to "help" Clayton with his lesson.  Neither one is very motivated to do their work for their own sake, but both are very eager to help the other!  Our lessons went very well and we had a ton of fun with some new songs we learned.  We're looking forward to a great year of learning!

Gone Fishin'

Brian did a tiny bit of fishing with the boys while in Gulf Shores, which I suppose inspired him to take them to the lake this week to let them experience freshwater fishing.  He spent most of his time working on the equipment, baiting, cutting, untangling, etc., but it totally paid off because both boys were able to walk away saying they had caught fish.  

Their lines had several hooks on them, so both of them were lucky enough to even catch two fish at once. I'm glad we weren't depending on them for sustenance though, because these fish were a little on the small side!  

Seriously though, doesn't every little boy need pics like this?  I just love it.  :)

Playmates

Jackson and Whitney are like peas and carrots.  When all of the kids are together, they just seem to pair off together more often than not.  And when left to their own devices, they could play together for hours.

They just kind of did their own thing while on vacation--playing in the sand, playing in the water, playing with trucks, or making music with the guitar--they seemed to entertain each other to no end.  The only problems occurred when one of the other kids tried to interrupt their games and play.  Things didn't bode well for Drew and Heidi who always seemed to disrupt the harmony Jackson and Whitney had going on!

Vacation 2012

Last year, we had an awesome vacation, which I suppose is the reason everything seemed to go wrong on this year's trip!  We stayed in a not so well kept condo, (I'll spare you the details on the dirt we found), the beach was dirty and full of stinky seaweed, the water was full of stingers from what we guessed was broken up jellyfish?, Josh and Nicole's room had no hot water for the first few days, Mom and Dad's room had plumbing issues, the parking was atrocious, it rained and stormed constantly, and my mom ended up in the emergency room almost all of one of the nights we were there.  

So while some sing the praises of Gulf Shores, we were all ready to get the heck out of dodge when it was time to leave Saturday!  We made the most of it, and I wouldn't have wanted to laugh about all the craziness with any other group of people, but I really don't want to have another trip like that for a while!

Nine Years Old!

Happy Birthday to Clayton!  Our world is brighter because God has blessed us with this beautiful child.  I pray he has a long and full life ahead of him!

On Fifteen Years

Today, Brian and I celebrate fifteen years of marriage.  (And when I say celebrate, I mean we simply kiss and say "Happy Anniversary", both hoping for a trip marking our milestone within the next year).   I really can't believe that we're old enough to have been married that long, but as I get to say now, "I'm pushing forty", which means the other numbers in my life are bound to get larger as well!

We. were. kids!  Looking back at these photos, we really had no idea what was in store for us.  All we knew was that we were in love and we couldn't bear to be apart not one minute longer!  So the two became one, and we've journeyed long and hard together over these years of marriage.  Who knew that within those first six years we would endure the death of a parent and then the death of a child?  And following those years, we have endured the illnesses and disabilities of another child . . . the grief, anger, sadness, and loss nearly overtook our relationship, but I'm glad to say we've come out on the other side.  Stronger. Unified. Dedicated.      

I love him.  "I am my beloved's and my beloved is mine . . ."

To the Zoo

On our many trips to Memphis over the last couple of years, we've heard so many people rave about the zoo there.  And since we had some extra time on this latest trip, we decided to check it out for ourselves.  As usual, the boys made it an interesting activity.  Clayton spent the entire time watching the trams/trains that traveled throughout the zoo.  He couldn't drive his chair for watching, and once they went by, he wanted to follow them, regardless of where we were actually headed.  (You can see that he was watching yet another one go by in the picture above).  I think Jackson enjoyed his trip--he mainly wanted to climb the gates and fences to get up close and personal with the animals.  He was also very distracted by the many fountains in the zoo.  We didn't realize you could bring your bathing suit and enjoy the water.  So many kids played in the fountains while Jackson looked on with a sad face because his mean old momma wouldn't let him jump in with his clothes on!  

I did find something out though.  While I'm not some maniac animal rights activist, I really don't enjoy the zoo.  It just seems so wrong to see a grizzly bear or polar bear while standing in 100 degree weather.  :/  Not to mention the fact that ever since Brian and I practically ran into a grizzly out in the wild (maybe I'll blog that story soon!), it just seemed a little anti-climatic to see one restricted to a certain amount of space.  

Despite my misgivings about the contrived habitats, we had an awesome afternoon as a family.  The boys were worn out from the fun and activity and Brian and I enjoyed every minute of our uninterrupted time with them.  

Imagination Station

We've got a new addition to our homestead:

I knew something was up when Brian showed up earlier than normal one afternoon with a trailer load of cardboard and lumber.  And he wasn't home an hour before this fort was completely constructed!  Of course the boys immediately fell in love with it and with that, Jackson immediately locked Clayton into "jail."  

Then they all decided to take a turn locked in jail!  (I think Brian was having just as much, if not more fun than the boys are!

 Jackson was having a hay-day exploring and climbing.

And at one point, this "seating area" turned into his stage for an impromptu concert.  You just have to love the unlimited possibilities of a creative imagination.  :)

Clayton even got to do his favorite thing:  "watch traffic," although there isn't much traffic happening in our backyard.  

It's basically been a work in progress from that day on--Brian has already waterproofed the cardboard roof and sides and has cleared out a "parking area" in the back.  My boys are pretty lucky their daddy hasn't lost his sense of imagination himself.  :)

So far, it's been a house, a jail, and a fort.  I'm thinking they definitely look like a couple of outlaws daring the outside to take them on.  

Good Reports

Clayton had two checkups in Memphis last week.  First doc we saw was his orthopedist.  Clayton's left hip is still slightly out of socket, but in general his x-ray looks the same as a year ago, which is definitely good news!  Also, while his spine does bend while he is seated, it is still flexible enough to go back to the straight position when he is lying down.  We are coming up on the next big growth spurt for him, and this is when it can get hairy for a non-ambulatory child.  All those spastic muscles will be pulling on his bones as they grow, so we will have to take good care to keep him in different positions and stretched well.  I pray his body handles the next few years of growing well.

We also saw his neurosurgeon.  His MRI was unchanged, which is another round of good news.  We discussed Clayton random afternoon episodes of crashing.  I had decided that he was having hypoglycemic spells, and she agreed that this could be possible.  She also suggested that it could be a low pressure headache from too much drainage from the shunt and/or from a bit of dehydration.  She said that almost all of her patients who deal with low pressure headaches find they come in the afternoon.  We'll see the next time it happens . . . if water helps it go away, then we'll know it was just a dehydration issue that led to a low pressure headache (low pressure due to not enough spinal fluid in his brain).  If that doesn't work and some juice or sugar water does, then we'll know it's low blood sugar.  I actually had his PCP order a blood test for the sugar, we just haven't made it to the lab after fasting for eight hours yet.  I hope to get that done this week and it might shed some light on the issue.  

All in all, two painless doctors appointments with happy doctors is what I'd call a win-win!

[God is] In The Details

Clayton had his yearly checkups with his orthopedic and neurosurgeon doctors in Memphis this week.  And since the appointments were on back to back days, we went all in and decided to make a family getaway of it.  Part of that trip would include a visit with Brian's cousin, who moved with her family to the Memphis area recently.  We knew Rosalind was near-term pregnant, but we still wanted to get together with her and her husband and kids.  But when her daughter came down with a high fever virus, we reluctantly cancelled our plans to visit, since we can't risk Clayton getting sick.  

We had a painless experience at our first appointment on Wednesday and spent the afternoon at the Memphis Zoo.  Meanwhile, Rosalind was busy going into labor across town!  When we realized she was in the hospital, we knew we should visit.  We figured the hospital was downtown, so we decided we might have to wait until late Thursday afternoon after Clayton's appointment.  On a whim Thursday morning, I decided to check the GPS to see where the hospital was located.  And guess what?  It was RIGHT NEXT DOOR to Clayton's clinic way out in Germantown.  Brian and I knew that was our sign that we should move up our visit.   

Rosalind said she immediately started crying when Brian walked in.  When you're having a baby far away from home, and you can't  have your mom with you, I'm certain any familiar [as in family] face is a welcome sight.  We had a great (but short) visit with Chris and Rosalind.  (Baby was too sick for us to see and had to be moved to the NICU).    I'm sad that our kids didn't get to play together, but I am so happy we were there for this moment in Rosalind's life.  We are definitely not her mom and dad, and definitely not her sister and brother, but I hope that Brian being there was enough of a pinch hit to give Ros and Chris a feel for home on their fourth (!) baby's birthday.  

I'm doing my best to recognize God's hand in the details of my life.  I admit that in some things, I'm a little blind to His work, and struggle to gain His perspective.  But when I do recognize His orchestration of the details, I want to be quick to thank Him--this visit is one such circumstance where it was obvious He was working behind the scenes to make sure Rosalind had a hug from home on this special day.  

No Limits

I've taken many of photo of Clayton in his eight years, and this one has to be in the top five of my favorites.  You can't beat the sunsets on Mt. Nebo, and you can't beat seeing Clayton conquer more terrain, both literally and figuratively.  

He brought me out into a spacious place; He rescued me because He delighted in me.

Psalm 18:19

Decompressing

Last week was emotionally heavy.  I can't even say that I'm fully out of the funk as of yet, but I am continuing on with daily life (even though most hours don't go by without me wondering "What are they doing in Heaven today?")  When I get into these melancholy moods, my first instinct is to circle the wagons and surround myself with those I'm closest too.  And while that usually includes extended family and some best friends, this weekend I went even farther than that . . . I really just wanted to spend time with my husband and babies boys.  

So that is just what I did.  We stayed around the house all day Saturday and basically decompressed from the week.  Sunday, we took off on a road trip and ended up on the top of a mountain taking pictures at sunset.  

There is no where I'd rather be than with these three guys.  

Photo Friday

". . . So we have stopped evaluating others from a human point of view. At one time we thought of Christ merely from a human point of view. How differently we know him now!  This means that anyone who belongs to Christ has become a new person. The old life is gone; a new life has begun!"

2 Corinthians 5:16-17 (NLT)

Saying Goodbye

  I have been extremely blessed to have all four of my grandparents to live this long and for them to be able to stay involved in my life.  But today I say goodbye to one of them and will sing at my Maw-Maw's funeral.  It will be tough to do emotionally, but it will be a pleasure to honor her memory with my voice.  

Weep Not!

My Maw-Maw passed away on Saturday evening after a long battle with a horrible debilitating neurological disease.  She had been house bound for many years and bound to the bed for at least two years.  It was a struggle to watch her suffer, but we now rejoice in the fact that she rests with her Savior!

What a blessing the promise of Heaven is to us!  

The Fine Line of Faith

I've been struggling lately.  Struggling emotionally, that is.  I don't know if it was the prayer conference, my birthday, Jackson's birthday, or the combination of the three, but I've been stuck going in circles inside my head for at least a couple of weeks.  So many things rolling around in my mind . . . so many battles, memories, and plans undone . . . 

I'll start with one of the biggies:  

Pastor Maria Durso preached a sermon that really made me analyze this faith thing, and how it pertains to my perspective on Clayton's healing.  I *DO* believe that God could heal Clayton in an instant if he wanted.  And I have people reminding me weekly that they are still praying for Clayton to walk, and still praying for his complete healing.  And I've prayed so earnestly that one day my little boy will simply get up out of the bed and walk into my room to greet me in the morning!  But I suppose that while I believe God CAN, sometimes I think he just isn't going to.  That this is Clayton's path in life, and this is how it will be.  But then I beat myself up thinking God is just waiting for me to give up that ghost, knowing that the healing is right around the corner.  And then once I do, only then will Clayton take his first step.

Like I'm the one that's holding things up.

Mother's guilt:  it's a beautiful thing . . . 

NOT.  

Either way, I feel like I'm failing.  Believe this is God's way for Clayton, and I've given up believing in healing.  Believe he will be healed any moment, and I've failed to accept the way things are for us daily.  It's like there is this fine line in between, this tightrope that I should walk, the constant state of faith that says, "God's timing is perfect.  Each day of trial is completely in God's will.  Each moment of Clayton's physical infirmities is divinely ordained, and the moment he is relieved of them will be the exact moment he is ready for it."  Faith that says, "Whatever path God chooses, it is the perfect path for Clayton."

Easier said than done, but that doesn't mean I won't be constantly striving for this ideal.  I will still depend on those reminders each week from others that God is working, and He is working on Clayton's behalf!  

Father, may you give me the grace to accept each day as a gift from you.  Provide me with a new energy and strength to deal with the day to day stressors of having a physically disabled child.  Grant me a kingdom and eternal perspective that makes both the waiting endurable and the anticipation exciting.  We are waiting on bended knees for the great miracles You have in store for Clayton!

I pray in the Name of Jesus Christ.  

Birthday Week

Since Jackson's birthday fell during the prayer conference at church, we decided to wait until this past weekend to have his official birthday party.  This meant that he got to celebrate virtually all week.  Sunday, he ate with his cousins.  Monday, my grandparents visited with a gift.  Tuesday, our friend Janet came by with a gift, and on Thursday, some more friends came by with yet another gift.  It all rounded out with a gymnastics party on Saturday.  He had a blast despite the fact that only one guest showed up.  All the visits during the week were a consolation when considering the extremely small crowd at the party.  

For Jackson, the party was right where he was--no need for crowds of people when you can entertain yourself like this!

And we couldn't get home fast enough for him to take Clayton for a spin in his new wheels:

I'm just waiting to see what kind of trouble these two get into with a new hot rod on their hands!

Right at Home

Clayton was in his element this past weekend as our church hosted our annual prayer conference.  And as usual, he quickly attached himself to a buddy and obsessed over being with her the entire time.  For this weekend, the focus of his affection was Ms. Leisa, who is one of many of our friends who dotes on his every whim and basically helps spoil him rotten.  (Who doesn't?!)  He helped her greet guests before each session, and to say he had a blast doing this job is a gross understatement.  He LOVED anticipating the arrival of each person, from watching them drive into the parking lot, to the point of shaking their hand as they entered the building.  

Clayton is right at home in our church services and events.  And it's no wonder!  These people have nurtured, loved, and indulged his every wish as long as he has lived.  They have prayed and supported us through all the trials of his life, and they have rejoiced in his triumphs.  Clayton is smart enough to know that this congregation is full of some of his biggest fans and closest companions, both child and adult.  We are grateful for friends who have made a comfortable and welcoming atmosphere for Clayton, and we're thankful his "home away from home" is indeed God's house.