What if the Lord Sees Good?

I don't think I've kept it any secret that I struggle with the "whys?" of Clayton's condition.  As parents, we feel like we've done what we are supposed to do to bring about healing.  We've been proactive with traditional medicine, we've added the ancient medicine of essential oils, and we've prayed over him and had him prayed over more times than it's possible to count.  We've done the whole reasoning with God thing----"Lord, if our unbelief is in the way, then what about those around us who are full to the brim with the faith that you will heal Clayton???"  Oh, we have faith that Clayton will be healed; but to be honest, when you're in the trenches of day to day life with disability, you lose hope that the healing will be on this earth.  

So when during his sermon the other day, my pastor said "If it's not good then God's not done!!!", I pretty much zoned in on that statement and didn't hear much of what else he said.  

IF IT'S NOT GOOD, THEN GOD'S NOT DONE.  

At first, the hope welled up inside of me.  Wow!  God would not leave us hanging!  The healing of Clayton's physical issues is just around the corner!  

And then. 

And then. 

And then this thought occurred to me:  What if God sees Clayton's condition as perfection?  What if God looks at Clayton and sees nothing but good?  

He sees a child who garners attention like no typical child can.  

He sees a child who has blessed countless people with his smile and spirit.

He sees a child who is full of JOY despite his circumstances.

He sees a child who is exposing non-believers to the love of the Father and the promise of eternal life in Heaven.

He sees a child so in tune to the Holy Spirit that it's as if he has a sixth sense about the struggles of others.  

He sees a child doing more work for the Kingdom in his little red chair than some of us adults all combined together will ever do.  

He sees good.  

He sees good.

He. Sees. Good.  

A Reason for Every Season

Seasons of interest definitely define certain time periods in our lives.  As a growing teen, I was consumed with the cheerleading and water skiing season.  Seasons in my adult life have included teaching, scrapbooking, and photography.  (Not to mention the monster season of taking care of a critically ill child).  And as per my personality, I have pursued each season with gusto, consuming all knowledge that I could about that particular subject.  When I do something, I tend to do it all the way--sometimes a good thing, sometimes to a fault!  No matter, when I see a particular season coming to an end, I find myself mourning and questioning all of the time and resources that I've poured into a particular hobby or job.  

If you are only a blog reader of mine, and you don't know me personally or aren't friends with me on Facebook, you probably haven't realized that yet another season has started for me:  the essential oil season.  As I was struggling to find my spot in the professional photography world, I took the plunge into using Young Living Essential Oils for our family.  This was something that I had been looking into for a while, and when I bought our first oils in July, I had no idea the doors that were going to open up.  At that point, I was praying for God to give me some kind of direction for my photography business, all the while not wanting to let it go because of all the time I've put into it.  As we started using the essential oils and seeing positive results, I instinctively knew that this was a path that God was leading me down.  But what of my other endeavors?  Leave them behind?  Try to do it all at once?  

As I talked to Brian about the thought of saying goodbye to my photography business, he reminded me that all is not wasted.  The skill set that I bring to the table when it comes to marketing essential oils is one of good photography and good design skills.  Skills that create fliers for my classes that look like this:  

And while driving home from yet another one of these classes Monday night, I had a good laugh at God's perfect timing and planning.  He does nothing by accident!  Here I am, a user of essential oils.  I've decided to sell them, which means I need to both market and teach others about their uses.  Hmmm . . . does anyone else see where I'm going with this?  

Me.  

A former teacher. 

Skilled in photography and design.

A heart for families like mine with health issues that modern medicine can't fix.

It's all being woven together in a beautiful design!  All of the talents He has blessed me with coming together to spread the word about God's healing oils!  Not a single moment spent in those other endeavors wasted.  All that time spent scrapbooking, I learned so much about design and layout.  Class after class and photo shoot after photo shoot, I'm an expert in shooting and editing.  My teaching skills?  They're a little rusty, I admit, but I've been teaching since I could walk and talk (just ask the stuffed animals and shoes that represented all of my students in my childhood classroom) and it's all coming back to me in an easy way.   

Now.  

I am still doing photography, but I've simplified a few things about the business that will free me up to spend some time working on these classes.  I couldn't totally give it up yet, because I truly love "shooting people" and seeing their reaction when they see themselves in beautiful light and surroundings.  

It is so unreal sometimes, these paths that God leads me down.  Sometimes with resistance, but always with faith, I keep following where He leads.  Where once I couldn't hardly breathe without having every moment planned to a tee, I now look forward to the next big thing He will push me towards. 

There is a time for everything, a season for every activity under the heavens . . .  

Ecclesiastes 3:1

When Grief Brings Silence

There comes a point in extreme crisis when the silence becomes deafening.  Clayton was still in the NICU when that moment came for me.  I sat in the ACH cafeteria watching the interstate traffic, and I realized that I had absolutely nothing to say to my God.  And the silence reverberating back was just as poignant.  It was like this big black hole between the two of us, and I couldn't step forward for fear of falling into it.  It was a scary realization.   I didn't know how to deal with my anger and grief over Shawn's death.  I didn't know how to pray for Clayton.  I was literally stuck in this chasm of wanting to pray, but not having anything to say to the Father.  Day after day, I repeated over and over, "Lord, you know my heart."  I depended on others to intercede more specifically on our behalf.  I simply didn't have the words to pray.

 ". . . for I know that through your prayers and God’s provision of the Spirit of Jesus Christ what has happened to me will turn out for my deliverance."  (Philippians 1:19)

What of this "black hole?"  Is it a good thing to have such a silence between us and God?  After years of reflection, I think it was indeed a necessary part of my grieving.  I heard a song just this last week with the lyric, "God is big enough for the whys."  And you know what?  He's big enough for the silence as well!  He is the Almighty; but he is also Abba . . . Father.   This is the same Father who watched as His newly created man chose disobedience.  The Father who watched time and again as His people chose to depart from Him.  The Father who watched His Son die horrifically on a cross. . .

He is truly "acquainted with grief!"  (Isaiah 53:3)

If anyone is familiar with A Change in Plans, it is our Father in Heaven, whose entire plan for this world was wrecked by sin.  And as He watches us live out life after The Fall, I can't help but think He grieves anew each time one of His children is hurting.  This wasn't His plan--wasn't His design!  The resulting hurts of this world must grieve His heart!  "The Lord said, 'I have indeed seen the misery of my people in Egypt, I have heard them crying out . . . and I am concerned about their suffering.'" (Exodus 3:7)  Moreover, the God-Man Himself was grieved when His friend Lazarus died:  "When Jesus saw her weeping, and the Jews who had come along with her also weeping, he was deeply moved in spirit and troubled . . . Jesus wept . . ." (John 11:33-35)

I think it is because of this "acquaintance with grief" that the Father knew we would require a supernatural helper to speak on our behalf.   When we have no words for prayer, when we know not how to utter our needs, "the [Holy] Spirit helps us in our weakness.  We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express.  And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for the saints in accordance with God's will."  (Romans 8:26-27)  Because of this intercession, we can rest knowing the Father is still working for our good, even when we don't know how to express our need.  

For me, the silence was a time of renewing.  It was as if the Lord was sitting across the room from me, quietly waiting for me to join Him at His table once again.  The important key was that I didn't choose to get up and walk away from Him for good.  After months of silence, I began to slowly utter prayers of thanksgiving, and even prayers on behalf of others.  It was those small basic prayers that eventually led me back to a true conversation with God, a conversation that was deeper than ever before.  And almost ten years later, I have come full circle as I intercede in prayer for the needs of others.

These full circles?  That's the way the Lord works in our lives.  Nothing is without purpose.  Even a period of silence and heartache can yield a renewed hope and resolve.  A resolve to live for Him, and a resolve to bring others into His arms.  

In Which I Am Changing

I'm not recognizing myself lately.  It's like there's a whole new person under this same old skin.  It hit me today that the answers to prayers said long ago are finally coming to fruition.  I lived so long in anger, bitterness, and sadness, that I guess I got used to living in that place.  I got used to crying out in prayer for God to change me, with no real change in my heart to show for it.  

"Help me to be Christ-like in all things, dear Lord!", while reacting in rage to even the smallest of inconveniences or disagreements.

"Help me help others, God!", all the while barely able to get out of bed some mornings, weighed down by my own sadness.

"Help me have a forgiving spirit, Lord!" when I was top notch at grudge holding and silent treatments.

"Help me to witness to your love and for your Kingdom, God!", while only allowing my belief in Jesus Christ to be fully exposed in "safe" company.

But it's as if a snowball started rolling downhill some time in the recent past.  I'm thinking the first snowflakes gathered together on the day Jackson was born.  It hasn't been roses since that day, but I do think that his birth was the beginning of healing in many ways for me.  And in the past year or two, I've literally taken myself by surprise with calm, reflective reactions to things that would otherwise break me.  Heck, before the holidays, I ran into the lady who was my partner in disaster, and before I could help myself I was actually nice to her and wished her a Merry Christmas!  The old me would have done all things possible to ignore and retreat after the fiasco I had been through with her!

I'm not anywhere near perfect, but I can feel The Potter molding His clay each day.  I once reacted to most stressful situations/events in fear, anger, and self-righteousness.  I now find myself becoming empathetic and forgiving, wanting to love and uplift, instead of judge and tear down.  I find myself becoming bolder for my Christian faith and beliefs, worrying not what the world says.  It's as if I'm living with a stranger, while really not at all.  It's the person I've prayed He would help me become.  The person He has been calling me to be!

Much work is left to be done in this spirit of mine.  Many days the old me rears it's ugly head.  But as my heart evolves, my priorities are changing and my life's goals become clearer.  I mean, seriously?!  Do I want to spend my life being mad?  Jealous?  In despair?  Fearful?  What kind of life would that be?  And what kind of witness to God's faithfulness?  Do I want the legacy of Shawn's death and Clayton's disabilities to be that it made their mom a bitter and sad woman?  NO.  NO.  NO.  With God's help I am choosing that their legacy be a mom who persevered.  A mom who ministered.  A mom who forgave.  And a mom who began choosing to see the good first instead of the bad.  With God's help, I'll be able to forge ahead with new attitude and perspective, not leaving room for regrets, judgement and indecision.  

Thanks for the song, Mom.  :)

You've Come a Long Way, Baby

Clayton's O.T. has figured out how to use his love of home movies to motivate him.  She videoed him today as he went through his feeding therapy.  He is very into watching himself on the screen, so he got to do so on the phone's screen while it was actually taping him, and then again when she played it back for him.  

It is in absolute miracle how far he has come.  This is the child who at one year old would nearly gag at the sight of others eating soft foods like the yogurt he licks on here.  His oral aversion was so severe, he couldn't even stand to have his own hands near his mouth.  What an answer to prayer to see him touching  foods to his tongue!  He has come so far--I'm hoping at this rate, he'll be able to eat a bite or two of cake on his sixteenth birthday!

Faith of a Child

For many years, Clayton has repeated with us as we pray before meals:  "God is great.  God is good.  Let us thank Him for our food."  Only in the last couple of weeks has he ventured on his own into the conversation of prayer.  His prayers are very topic appropriate, and very age-appropriate.  But above all, they will make you think . . .

"Father,


Thank you for my sandwich.


Thank you for my chest muscles.  


Amen."

Chest muscles aside (don't ask, it's a long story!), the striking part is this:  Clayton remembers to give thanks for a sandwich that he isn't even able to eat yet.  Talk about another dose of perspective!  We are told to pray, and to be thankful to God even before the blessing comes.  Clayton's life has put him on the fast-track of believing without seeing--it takes most of us a lifetime to get to that point!

Be cheerful no matter what; pray all the time; thank God no matter what happens. This is the way God wants you who belong to Christ Jesus to live.  

1 Thessalonians 5:16-18

Let's Talk Miracles

A couple of weeks ago in Bible Study, we had a long discussion about miracles.  As a group, we came to the conclusion that miracles are happening everyday and all around us, and we only need to change our perspective to recognize them.  Moreover, it would even do us some good to reflect on what we have prayed for and learn to recognize the subtle answers to those prayers, even if they didn't come in the way of the parting of the Red Sea. 

Shawn and Clayton were born at 24 weeks gestation.  At 23 weeks gestation, the lungs are still a solid mass, not even able to hold air.  So when they were born, their lungs were only just beginning to have semi-functional air sacs.  This is why premature babies battle so many respiratory complications.  Throughout the months in the NICU, we were told Clayton would battle "chronic lung disease" (generic name for crappy lungs) for his entire life.  And in fact, he was on oxygen 24/7 until around the time he was five years old.  Any cold, any flu, ANYthing seemed to affect his ability to oxygenate.  It seemed we would always live with the oxygen tanks nearby. 

Fast forward to the Shunt Debacle of 2010.  With hours to sit and think, Brian and I started to realize that something was different this time.  Clayton had been off oxygen for quite a while, but he also hadn't been sick.  But here he was, sicker than he'd been in a long time and his lungs were functioning beautifully.  THAT, dear blog readers, IS A MIRACLE!  How often did we pray that the Lord would heal his lungs?  How often did we pray to be rid of that blessed nasal cannula?  How often?!  Did the answer come is some flash of lightening?  No.  But the answer DID come!    Clayton's last two chest x-rays have showed NO SIGN of lung disease.  NONE.  For the last two years, Clayton has been off of ALL inhalers.  He doesn't even require maintenance inhalers!  We've seen the pulmonologist once a year for the past three years and he is pretty much ready to call Clayton done with pulmonology and has discontinued his oxygen prescriptions.

Miracles.  They're out there, folks.  Had enough money to pay the bills this month?  For some, a definite miracle.  Your boss changed your hours so you have more time for family?  Miracle.  Sold your house right on the deadline?  Miracle.   You were told you had MS one day, the next day doctors can find no sign of the disease?  Miracle.  Healthy baby born at full-term?  MIRACLE. 

Some come in an instant, some come after years.  But there is no denying Our God is working on our behalf in the midst of the small details as well as the big.  It's just up to us to recognize it.

Overlooks, For Now . . .

With the onset of spring in Arkansas, we have begun our habit of small road trips to take in The Natural State.  Now, Brian and I are not rugged, outdoorsy, hiker types by any stretch of the imagination, but we do enjoy a stroll through nature every once in a while.  (After all, we met in the most happenin' "natural" place in North America:  Yellowstone National Park!)  

When Clayton was little, the fact that he wasn't ambulatory never even crossed our minds.  We (and when I say "we" I mean Brian mostly) usually just carried him on a trail or wherever the rugged terrain took us.  But as he has grown, it has simply become impossible for us to carry him for any distance.  Which is frustrating because also as he has grown older, we want him to see more and more of the outdoors!  

In the couple of years before Jackson was born, we kept our road trips to just that:  on the road.  We all just looked out from the car and the scenery was kept at that.  But now that Jackson is a part of our family, the whole dynamic has changed.  Jackson wants to be outdoors and he wants to explore!  

On a recent trip to a state park, Jackson was raring to go, but there was absolutely no way to get Clayton through the pathways the park had created.  We saw family after family taking off down the trail, enjoying a walk through nature.  And yes, I was jealous.  These are the activities I want to do with my children!  (How many times have  I seen a suggested activity on a school lesson include a "nature walk??")  

So far I've only been able to locate two parks in our state with wheelchair friendly trails.  I so wish this number were greater!  (And I'm not wishing for a paved trail, just some packed gravel would be sufficient!)  But until we dig up more options, I've decided we'll have to hold onto two rays of hope:  1) his power chair (when we get it) will be equipped to tackle much more than his manual chair 2) I've noticed several parks offer horseback riding on the trails, which is doable if Clayton improves his endurance on a horse.  I'm so banking on this second one as that brainstorm came to me after following a link about our state parks that a friend sent me.     

******************

As I proofread this I'm wondering why I'm even whining about such a thing?!  I saw a child at clinic today who had no clue of his surroundings.  Be thankful, self!  Be thankful your child can take in his world and accept God's beauty around him!

**After chastising myself for complaining, I decided to go ahead and include my original post because it is a perfect example of how a special needs parent digests the realities, and often limits, for their child.  Yet perspective kicks in and you remember to thank Him daily for the gifts that have been given . . .

Looking Back, I See His Face

I just finished my new favorite book a few days ago.  I wish I'd finished it sooner--I wanted to devour it the day it arrived in the mail, but motherhood duties called and so I was forced to take time reading it through.  I think I'll read it again with a pen and highlighter for notes in the margins! 

One Thousand Gifts:  A Dare to Live Fully Right Where You Are was written by Ann Voskamp who blogs at http://www.aholyexperience.com/.  I first heard of her blog and book from other moms at Five In a Row, and was intrigued by her unique prose and perspective.

So many passages in the book spoke to me.  I had too many "A-HA!" moments to even count!  Not to mention the thoughts of "I wish I could share this part with so-and-so . . ."  But by far the following passage spoke loudest to me.  It had me thinking "did the Lord have her write that just for little ole' me?"  In fact, I wanted to share so much of the passage that I had trouble cutting it down for this blogpost!  I tried to include enough to provide context, but stopped at typing out the entire chapter!  Read and then look back.

Look back to see His face . . .

Remember and give thanks? For what? What if remembering doesn’t kindle gratitude? What if remembering just leaves third-degree burns?

The words sear. I know their voices and I remember their faces and the sun spills from window glass, slants gold across steering wheel. Eyes on the road, yellow line dashing like a line on hold, I wait, just wait. In the wait, memories blister. And in the still, Spirit comes and He whispers a name.

Christ.

And I see a world through His lens: “He who did not spare his own Son, but gave him up for us all—how will he not also, along with him, graciously give us all things?” (Romans 8:32 NIV).

He gave us Jesus. Jesus! Gave Him up for us all. If we have only one memory, isn’t this one enough? Why is this the memory I most often take for granted? He cut open the flesh of the God-Man and let the blood. He washed our grime with the bloody grace. He drove the iron ore through His own vein. Doesn’t that memory alone suffice? Need there be anything more? If God didn’t withhold from us His very own Son, will God withhold anything we need?

If trust must be earned, hasn’t God unequivocally earned our trust with the bark on the raw wounds, the thorns pressed into the brow, your name on the cracked lips? How will He not also graciously give us all things He deems best and right? He’s already given the incomprehensible.

Christ our Crossbeam.

The counting of blessings is ultimately summed up in One.

All gratitude is ultimately gratitude for Christ, all remembering a remembrance of Him. For in Him all things were created, are sustained, have their being. Thus Christ is all there is to give thanks for; Christ is all there is to remember. To know how we can count on God, we count graces, but ultimately there is really only One.

And the radical wonder of it stuns me happy, hushes me still: it’s all Christ. Every moment, every event, every happening. It’s all in Christ and in Christ we are always safe and “how will He not also . . .?”

When bridges seem to give way, we fall into Christ’s safe arms, true bridge, and not into hopelessness. It is safe to trust!

We can be too weak to go on because His strength is made perfect in utter brokenness and nail-pierced hands help up. It is safe to trust!

We can give thanks in everything because there’s a good God leading, working all things into good. It is safe to trust!

The million bridges behind us may seem flattened to the earthly eye, but all bridges ultimately hold, fastened by nails.

It is safe to trust.

Each bridge I need cross, from one moment to moment the next, is wholly safe, each leading me deeper into Him and closer to Home.

And I hear that hurting voice again, her and me and all those aching voices I have known and they still cry: There are moments that as sure as I bruise don’t feel like good things have been given. What of all the memories where Christ seems absent? When the bridge shakes and heaves, when “how will He not also?” reads more like “He will not.”

 

Trauma’s storm can mask the Christ and feelings can lie.

I draw all the hurting voices close and I touch their scars with a whisper: sometimes we don’t fully see that in Christ, because of Christ, through Christ, He does give us all things good—until we have the perspective of years.

In time, years, dust settles.

In memory, ages, God emerges.

The when we look back, we see God’s back.

Wasn’t that too His way with Moses? “When my glory passes by, I will put you in a cleft in the rock and cover you with my hand until I have passed by. Then I will remove my hand and you will see my back” (Exodus 33:22-23 NIV).

Is that it? When it gets dark, it’s only because God has tucked me in a cleft of the rock and covered me, protected, with His hand? In the pitch, I feel like I’m falling, sense the bridge giving way, God long absent. In the dark, the bridge and my world shakes, cracking dreams. But maybe this is true reality: It is in the dark that God is passing by. The bridge and our lives shake not because God has abandoned, but the exact opposite: God is passing by. God is in the tremors. Dark is the holiest ground, the glory passing by. In the blackest, God is closest, at work, forging His perfect and right will. Though it is black and we can’t see and our world seems to free-falling and we feel utterly alone, Christ is most present to us, I-beam supporting the earthquake. Then He will remove His hand. Then we will look.

Then we look back and see His back.

I look in my rearview mirror. The bridge I cross on the way to the chapel has fallen behind hills. I can still see, in memory, the river’s winding light, mirror on moving water.

God reveals Himself in rearview mirrors.

And I’ve an inkling that there are times when we need to drive a long, long distance, before we can look back and see God’s back in the rearview mirror.

Maybe sometimes about as far as heaven—that kind of distance.

Then to turn, and see His face.

~Ann Voskamp

Thank you, Ann, for reminding me that some of our hardest moments and battles have also been the most precious and beautiful when viewed from this side.  We should consider ourselves blessed.  The Lord has chosen to shower us with His glory in many a sweet, sweet moment.   

Right Where I Should Be

It all started with singing on the junior high cheerleading bus while we traveled to ballgames.  "You need to be a singer!"  "You should go to Nashville, I'll be your manager!"  "You should go on Star Search!" (That statement dates me for sure!)  My friends and I just knew I could be famous someday if given the chance, but I never pursued singing for real.

And when I finally came out of my shell as an adult and started singing in front of real live audiences, the first words out of my dad's mouth were "she needs to cut a record." (And that statement really dates him!)  Then when Brian and I started playing and singing with the band, Brian and Charlie just knew I could make some "real money" if I'd just push a little harder, pursue a little bit more.  Brian is still dreaming about the day we'll be traveling on my tour.  Not me.  I love singing.  And almost any kind of music will do, as long as I can feel the song in my heart.  But when I think about a life of trying to "make it big," I can't imagine handing my mom duties over to anyone else.  I look at my babies and never in a million years could I have a nanny or babysitter be in charge of their care the majority of the time!  This is how I know I'm right where I should be.  Taking care of and loving my babies like no one else could.

Is it hard some days?  You bet.  But I wouldn't trade it for the world!

Wasn't that long ago,

when I was skipping to school with a lunchbox,

pigtails in my hair.

Where did the time go?

One minute I'm playing in the sandbox,

how'd I get to here from there?

Making lunches and folding clothes,

it's not the most glamorous life I know.

But I've got so much more that most!

I'm not famous, but my kids think I'm a star!

I'm not rich, but I've made a million memories so far.

I'm not a model, but my man thinks I could be . . .

I may not be from royalty, but in these four walls, I'm a queen.

I had it all planned . . .

 first I'd make it big in Nashville,

then take Hollywood by storm.

But it was in God's Hands,

'cause there were three little lives that would need me

to one day be their Mom . . .

I wouldn't trade it for anything.

Those movie stars don't have everything.

I know I'm right where I wanna be.

I'm not famous, but my kids think I'm a star!

I'm not rich, but I've made a million memories so far.

I'm not a model, but my man thinks I could be . . .

I may not be from royalty, but in these four walls, I'm a queen.

                              ~"These Four Walls" by Sara Evans

Being Thankful: A Matter of Perspective

It seems I blog a lot about perspective, but only because the word describes a lot of what my feelings and emotions are based on these days.  I guess we all make those "I'm thankful for . . ." lists each year.  And while most often the items on the list rarely change, I think sometimes they are rearranged.  Of course I'm thankful for my material posessions this year.  We have been blessed above and beyond with so many things we simply want.  But I have to say the following non-things are at the top of my list this year:

1.  MEDICAL ADVANCES:  I love my Clayton so much.  I hated seeing him so sick this summer.  THANK YOU, LORD for allowing his healing through the work of doctors, nurses, and modern medicine.  This summer made me realize (again) just how precious Clayton's life was and how each day with him is an AWESOME GIFT to be enjoyed and LIVED!

And on a much smaller scale, thank you, Lord, for the field of Urology and a urologist who works on Thanksgiving weekend.  Brian has been battling a kidney stone for over a week, and finally had it removed by the doctor this morning.  And while his pain isn't completely over, at least that blasted stone is out and Brian can get on with his life!  It's been interesting seeing him go near stir-crazy from battling this thing all week.

2.  ACTION-JACKSON:  How sweet it is to have this ball of energy running around the house!  (Sometimes exhausting and annoying, but still very sweet!)  Thank you, Lord, for giving this beautiful boy to us!  He is simply amazing to watch.  Tiny miracles each day that remind us never to take normal for granted. 

3.  MY PARENTS:  How many times this year alone have my parents dropped what they are doing just to help us out in a time of crisis?? (We seem to have too many of these!)  Not to mention their countless hours of babysitting throughout Clayton's life.  It doesn't matter what I need of them or from them, my mom and dad always come through for me.  Thank you, Lord for my parents, who make AWESOME grandparents!

4.  MY BROTHER AND SISTER-N-LAW:  This summer, Josh and Nicole helped us out big time when Clayton was in the hospital (Josh was in Memphis the moment I asked and Nicole kept Jackson when my parents needed a break).  And this past week, they were there again in our crisis.  When Brian went to the E.R., Nicole was happy to drive into town and pick up Jackson for me.  Josh was on call all week to take Brian to the doctor.  I was so glad I didn't have to worry about Jackson and definitely glad Josh was willing to get up in the middle of the night if need be!  Thank you, Lord for family!

Like I said, these things are always on my list.  But this year they seem especially important and at the top for sure.

I am blessed!

The Dichotomy of LIMBo

Bitter.

Sweet.

As a parent who has experienced a Loss in Multiple Birth (LIMBo), these words are never far from my mind.  When I think about Shawn's death, I wallow in self-pity, begging God to turn back the clock--let me hold him one more time!  let me tell him I love him just once more!  I beat my head against the wall wondering what I could have done differently to stay pregnant longer, and in turn given him a fighting chance at life.   And in spite of myself and the years that have passed, I still ask WHY?! 

And then.

And then, I look at this precious face.

How blessed I am!  How incredibly precious Clayton is to me!  This little boy is proof that modern day miracles happen.  He is proof that God heals our hurts in more than one way.  After Shawn's death, Clayton gave me a reason to get up each morning.  A reason to keep moving and breathing.  And in the years that have followed, I have needed only to look at his smile and my tears dry up.  How can I weep when his beautiful face is looking up at me?  I am blessed indeed.  

Reminder

Tonight I was feeling quite frustrated and sorry for myself with the sleep situation/night time routine around here. Although he's come a long way, Clayton still struggles to go to sleep each night and actually stay asleep. On a good night, it's an hour ordeal. And most nights, it's closer to two. Add Jackson to the mix and it's exasperating! But then I jumped over to the Kidz blog and read this post. Nothing like some perspective to slap you in the face, not to mention a HUGE reminder from the Lord!

I lift up my eyes to the hills—
where does my help come from?
My help comes from the LORD,
the Maker of heaven and earth.
He will not let your foot slip—
he who watches over you will not slumber;

indeed, he who watches over Israel
will neither slumber nor sleep.

Psalm 121:1-4

Lord, please be my right and left hands (and whole entire body for that matter) during these night time sagas! I figured out that I can't do it alone!!

It's the Little Things

I went to Target today. Among other things, I wanted to get Jackson a pair of shoes. First pair I've bought him. You wouldn't think the experience would be emotional, and even though I wasn't expecting it, my eyes did get teary. For a long time, Clayton didn't even need shoes. Why buy shoes if you are in the hospital for the first six months of your life? Why buy shoes if you never actually go anywhere once you live at home? And when he finally did get shoes, they were the ones that fit over his dAFO's which are a 10+ on the ugly scale. He wore these forever until I finally figured out that New Balance wide widths would also fit over the braces. But even then it took a lot of effort to actually get those shoes on. And when we buy "regular" shoes for him to wear without his braces, it's a struggle to find the perfect pair. With his high muscle tone, it's almost impossible to get a shoe on his left foot that is the actual right size. We have to buy larger sizes even then just so we can get both feet in the shoes. And sandals won't hardly stay on at all--the right foot sometimes, but that left foot just can't relax enough for the shoe to sit right on his foot.

So today when I decided to try a pair on Jackson and it slipped right into place, it was so WEIRD! I couldn't help but think "so this is how everyone else does it . . ." Which, by the way, I've thought many times lately. So many things that are considered "normal" to everyone else are just foreign to us. And I'm not talking about huge things, just the little everyday occurrences like buying a pair of shoes.

Hindsight

I've been going through a lot of my old pictures lately and boy, was I surprised at what I discovered! I was absolutely flabbergasted at how much weight Clayton put on after his new diet kicked in--and I've basically been feeling guilty ever since! How could we not have seen how heavy he was getting?! I guess we were just so glad to find a GI doctor that could make him grow that we were oblivious to the predicament we were putting both him and us in. It's taken quite some time for him to actually grow length wise and slim up instead of grow out . . .and we did ourselves no favors since he is totally dependent on us for mobility! Here he is in the NICU (August 2003) just a couple of days old (1 lb, 8 oz). He's so skinny, you can count his little ribs. And here he is at almost a week old--still the preemie skinny:

This pic was taken some time in late 2004 here at home. He weighed around 12 lbs for several months:



And then in February 2005, we finally started seeing the new doc and started the new feeding regiment. And when she said she could "get a rock to grow if you feed it enough of the right stuff," she wasn't kidding! You can see by this pic in July 2005, he was finally starting to get his baby fat:

And then this next one bothers me big time (July 2006). He is always beautiful, but how could we not recognize how chubby he was??? I mean, when I look at this pic, I think he looks sick in the total opposite way that he was in the beginning. And we never even realized it! It didn't help that he had his dad's shorty genes either! He ended up getting to the 95th percentile in weight while still in the negative percentiles on height. Quite the little chunk--no wonder he was slow to make gains in physical therapy . . . I can't believe how hard we made it on him and that we didn't recognize it enough to say a big NO to the doctor on increasing his calories anymore. She has since told me she likes to err on the side of a heavy baby, but I can't say I would always agree with that position. For a child who gets no "regular" excercise, and who is totally dependent on others for mobility; it just seems natural to err on the lighter side of weight. But hindsight is 20/20 I suppose, and like I said earlier, we were just so glad to see him grow out of that preemie look that we didn't even notice! (Oh, and I do have to say that those big, beautiful eyes still stand out!)

He finally started slimming up (or stretching out you might say) in 2007. This one was in September:

And in July 2008:

He's been on the same calorie intake for three years. Which translates to a big-time diet for his age. And while his weight has finally leveled off (he's been at or around fourty pounds for at least a year now), he continues to grow taller and his legs are getting longer and longer. Definitely a better way to grow in my opinion! Here he is in February of this year, all healthy little boy and baby no more . . .

The Right Answer

A layout about a revelation I had the other day as Clayton was singing to me:

Journaling: In the last five years, we’ve learned a lot about prayer. We’ve prayed for complete healing for both of our boys, fully expecting for our version of “healing” to be realized. Our human minds could only fathom one version of healing for our twins: two healthy, “normal” boys running around and playing. But the Lord has shown us that our type of healing wasn’t the only kind around. Shawn was entirely healed the moment he entered Heaven—never having to experience pain again. And in Clayton’s case, his healing has come more slowly and in sweeter doses. Each milestone is more special than the last, simply because he has overcome so much and defied all the medical odds. He wouldn’t be our Clayton if he hadn’t had to fight all these battles! My mother’s heart still has days that it longs for my twins to be here on earth together, totally well and strong little guys. But as time passes, I realize that God’s will is the best will despite our original prayers. And as my baby sings the words “Tis So Sweet to Trust in Jesus” back to me, I’m amazed to realize that even though we haven’t always gotten the answers we were looking for, we have always been blessed with the right answers to our prayers.

Always Keep the End in Mind

Dandric Moten, (a guy I went to high school with), started a program with his mom, Thelma, called Excel. They work through the schools and try to encourage kids to make good decisions. Dandric said his mom has always told him to "keep the end in mind." Hard concept when you're talking to young kids who live for today and don't think of tomorrow. So I'm reminded of Thelma's advice when it comes to things I'm dealing with right now. I need to step back and look at the big picture--things will come together.

Blessed Be the Name of the Lord

After yesterday's post and a good night's rest, I'm reminded that I'm not alone. God is right alongside me throughout this journey. I only hope that he can kick my butt into gear! I'm giving thought to seeking help in more ways than one, but like anything I do, I'll have to analyze it to death first. For now, I will be singing this song in the back of my mind. Click on the title if you'd like to listen.

Blessed Be Your Name

by Matt Redman

Blessed Be Your Name

In the land that is plentiful

Where Your streams of abundance flow

Blessed be Your name

Blessed Be Your name

When I'm found in the desert place

Though I walk through the wilderness

Blessed Be Your name

Every blessing You pour out I'll turn back to praise

When the darkness closes in, Lord

Still I will say

Blessed be the name of the Lord

Blessed be Your name

Blessed be the name of the Lord

Blessed be Your glorious name

Blessed be Your name

When the sun's shining down on me

When the world's all as it should be

Blessed be Your name

Blessed be Your name

On the road marked with suffering

Though there's pain in the offering

Blessed be Your name

Every blessing You pour out

I'll turn back to praise

When the darkness closes in, Lord

Still I will say

Blessed be the name of the Lord

Blessed be Your name

Blessed be the name of the Lord

Blessed be Your glorious name

Blessed be the name of the Lord

Blessed be Your name

Blessed be the name of the Lord

Blessed be Your glorious name

You give and take away

You give and take away

My heart will choose to say

Lord, blessed be Your name