Forward Progress

A year ago, we were at our wit's end with Clayton and his lack of PT progress.  He had not made any gains in a few years, and his attitude was less than stellar.  He was being hateful with his therapist and ending up in time out instead of completing therapy.  I spent two meetings at the clinic crying because I was so embarrassed by his behavior, but at a loss as to how to help him with his frustrations.  

In July we started giving him essential oils and in November, I started giving him Young Living's blended juice, Ningxia Red, which contains wolfberries and many essential oils.  We also renewed our prayers as we charted this new course of treatment.  He's been on an uphill climb ever since.  He just keeps doing better and better and most importantly, is MOTIVATED to participate in therapy!  That in itself improves the sessions 100%!  

He has really been working hard on transferring himself to a bench from his chair, and yesterday I was able to see him do it virtually by himself.  Reesha's hand was only there as a spot, and he was doing most of the work.  Granted, this was the fifth or sixth time he had done it, so by the time I arrived, he was pretty pooped.  But I was still impressed with just how far he's come in his attitude and his strength!  What a difference a year makes.  Can't wait to see what the Lord has in store for Clayton over the next year!  

*You should be seeing a video of Clayton in PT here . . . some people are seeing a video from a couple of years ago of my brother and I singing.  Not sure where it's coming from since it is on my SIL's YouTube channel.  ???   

Be Careful When You Fast

Seriously.

Who knew that on the first day of my fourth annual 21 day fast, the Lord would hit me with an idea so out of the blue that I shook it off, thinking surely he must be mistaken?

For a few months now, our middle school class at church has been without a teacher.  And in that period, they've been floating back and forth between helping with the smaller kids and attending older youth classes (and feeling extremely out of place---there's a big difference between a fifth grader and a twelfth grader).  I'm close to a couple of these kiddos, and I could almost feel their sense of "I'm lost!" as I watched them at church week after week, but it never once occurred to me that I was the one that should do something about it.  

On January 5th, I started a 21 day fast that I've done for the past four years.  And boy was I surprised when I sat down in church that morning for the worship service . . . it was as if God Himself hit me over the head with a big banner:  "MIDDLE SCHOOLERS."

Come again?

Surely not me, Lord!  Brian is helping in other areas and I would need his help--I would never be able to handle it myself!  And then, of course, I was reminded of my own words----it's not for me to do alone. And certainly not for me to do in my own strength.  These kids needed a teacher.  They needed someone to invest.  Even more, I needed to be pushed in my ministries at church instead of always falling back to music as my primary way of serving.  So after another week of fasting and making sure that I had really heard God correctly, I agreed to take on the fifth, sixth, and seventh graders at our church.  And you know what?  It.  has.  been.  fabulous!  Sure, we're still in the honeymoon phase, but  the kids have shown up, they've participated, and we're all looking forward to building our little class into something quite special.  

So be careful when you fast.

Or you just might get a little more than you bargained for.

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

Grace . . . So How's That Workin' For Ya?

So as predicted, the ungraceful monster in me has already reared it's ugly head. I was doing good. And then, of course, LIFE happened. I've lost my cool a couple of times (nothing like the old days), but in both instances, as soon as they happened, I recognized them for what they were: a direct attack from Satan to steal my peace.

Not as an excuse, but just as an example . . . . . . this is a sliver of a conversation I had with a nurse at the hospital the other day that almost sent me over the edge. (I don't know why checking Clayton into a clinic that he has gone to at least four times a year for the last ten years is so darn hard!)



[She was asking about his meds--the ones that the other clinic we had just visited an hour before had just asked about and checked in the computer]. Her: Can you tell me his meds and doses? Me: He is on 750 mg of Keppra twice a day Her: Well, I need to know the ml so I can figure how many mg he is on. Me: He is on 750 MG twice a day Her: But how many ml? Me: 7.5, but I'm telling you the actual dose so you don't have to worry about "figuring" anything Her: What else? Me: He is on Baclofen, 20 mg a day Her: But how many ml do you give him? Because that will tell me how many mg Me: I'M TELLING YOU the mg: TWENTY. Her: Well, I have to know the ml so I can calculate the mg. Me: (banging my head against the wall, FOR REAL, I Was), you asked me the DOSE, I told you the DOSE. If I told you the ml, that means nothing unless you know what the pharmacist compounded it at! I'm TELLING you the MG! Her: Well, no offense to you, but not all parents know the dose, so I have to ask the ml. Me: BUT I KNOW THE DOSE, so forget the ML! And she was super impressed that I knew how much his wheelchair weighed by heart. Seriously lady, this AIN'T MY FIRST WEIGH IN. Do you know how many times we've done this??? And in the ENT clinic, the triage nurse wanted me to list all of his surgeries (remember this is just an appt to get sleep study results). I said, "from birth?" She said yes. I said "let me dig out my official list and you can make a copy." "Well, I guess I can look them up in the system." NO DUH! WHY ARE THEY FOREVER TYPING INFO INTO THOSE COMPUTERS WHEN THEY NEVER REFERENCE THEM?

These grace-tests???

I hope they aren't signs of how the whole year will go.

The Year 2014

I've never been one for New Year's resolutions.  At least the specific ones some people set.  But I do always feel like a new year brings a clean slate, and a chance to recharge and restart.  I might be behind the times, but this is the first year I've seen online conversations about "words" for the new year.  I've never really given thought to christening a year of my life with a theme of sorts, but I admit the thought was intriguing.  However, coming up with an actual word would be the trick!  What if I picked something I couldn't live up to?  What if I picked something completely contrary to the year God had planned for me?  

But as we drove home last night from dinner, (a dinner that had been paid for by an anonymous stranger in the restaurant), the word became clear in my mind's eye.  

Grace.  

Sounds quite spiritual doesn't it?  

There are only about a million problems with this being my word of the year . . . for starters, I'm less than perfect when offering grace to others.  And graceful is definitely not a word I would use to describe myself.  In fact, as soon as I saw the word in my mind, I starting making excuses for why I could never live up to a "Year of Grace."  

But therein lies the twist . . .

I'm not supposed to be doing it on my own!  Living a grace filled life is not about me doing it in my own power, but completely about God's grace flowing through and out of me as I learn to dwell in the Holy Spirit.  And is living gracefully contrary to God's will for my life?  Certainly not!  If I am to become more like Him, then receiving and giving grace is most definitely a part of that plan.  

I admit that I am scared even putting this out there for anyone to see.  I know those close to me will read this and about a month from now wonder where the grace is when my temper flares up.  I'm praying that with God's help those moments will be non-existent, and that I will be able to truly focus on living GRACE-filled.  

This is love, not that we loved God, but that he loved us and sent his Son as an atoning sacrifice for our sins.  Dear friends, since God so loved us, we also ought to love one another.  

1 John 4:10-11

Quotable Quotes

I often worry about my kids becoming ungrateful, or indifferent to the blessings of Christmas.  Thankfully, that situation has yet to arise, and they are still captivated by the magic of receiving packages full of surprises.  Clayton is always glad to receive, but he isn't able to articulate his excitement quite like Jackson.  Jackson's words were definitely some that I don't want to forget.

When opening his long awaited red yo-yo:  "YEEEEESSS!  This is the BEST DAY EVER!!"

(Take note of gangsta Clayton in the background . . . )  :)

As he lay in bed facing Clayton (just after I removed his new glasses with windshield wipers), Clayton sneezed.  As I helped Clayton with a kleenex, Jackson looked at me matter-of-factly:  "See, Momma, that's why I needed to wear my glasses with the windshield wipers."  

Christmas morning:

"It just keeps getting better and better, Momma!"  

"Santa has cool stuff."

"This is the BEST DAY EVER!!!"

"This is the WORST. DAY. EVER."  (Why, Jackson?)  "Because we have to wait for everything to charge."  :(

And as we began another game on the new WiiU, "Let's do this thing!"

(I guess he considers himself an old pro after just 24 hours of Wii).  

I'm sure there are some that I'm forgetting, but one thing's for sure--Jackson was one happy boy this Christmas, and he couldn't help but infect others with the excitement of opening gifts packaged especially for him.  

A Brother's Questions

I can remember when I found out I was pregnant with Jackson.  One of my main struggles was that he would never know his brother.  That he would never realize what an impact Shawn had made on our lives.  I was so wrong.

Daily.

Daily this child speaks of his brother.  It's not as if I discuss Shawn that much, it's just that when I do speak of him, I suppose it makes a giant impact on Jackson's heart.  So many questions that he is trying to find answers to.  And even in his own way, Jackson mourns the loss of his older brother.  

Where is my brother?

Is Shawn in Heaven?

Can Shawn come down and play with me?

Will I be able to play with Shawn in Heaven?

When is Shawn going to come down?

I want Shawn to come down from Heaven!

How old is Shawn?  

But how old is he in Heaven?  

We will see Shawn in Heaven?

When can we go to Heaven?

I admit that these questions leave me a little baffled at times.  I certainly don't know all of the ins and outs of life in Heaven and how long we will all live here on earth before joining Shawn in Heaven.  

I suppose this talk of his brother who died has also influenced Jackson's proximity to death itself.  He is very concerned that Brian or I will die without him.  :(  I hate that his little four year old mind wrestles with these worries.  

I find strange comfort in some other conversations that we've had about Shawn . . . Jackson has told us repeatedly about being "in the boat with Shawn" and that Shawn wanted to hold him.  He has also insisted in other instances that "Shawn wants to hold me!"  I have no idea where this boat incident comes from (a dream?), but I find comfort in knowing that Jackson has somehow figured out that even from Heaven, his big brother Shawn loves him.  Loves him and wants to hold him.  

No One is Immune

Yesterday, Clayton had dental work done in the operating room--a routine procedure for him.  Routine except that for the first time in ten years, Clayton had to see a dentist other than Dr. Koonce, who happens to be The Best Pediatric Dentist Ever.  He is on medical leave, and we are missing his sweet spirit; and this momma was a bit anxious about dealing with a new doc.  My fears were unfounded, as it turned out, because the new Dr. Dentist was very pleasant and great to work with.  

He officially won our hearts when he got TEARY-EYED while simply recounting his report from the procedure.  He had only known Clayton for a couple of hours, and even he wasn't immune to how special this little boy is.  He eventually cut our conversation short because he got misty eyed a second time talking about how taking care of patients like Clayton helps him sleep well at night. :)  It seems Clayton impacted yet another life, simply by being Clayton.

Evidence of Growth

I think I've mentioned before that it hasn't always been roses for Brian and me.  We've had plenty of dark days in our marriage, but our commitment has kept us going.  Our foundation of faith carried us through even when we felt like running far, far away.  It has been with those dark days that our spiritual growth has occurred--kind of a "behind the scenes" growth that you don't even really know is happening.  And after I got off the phone with Brian yesterday, I just couldn't help but praise the Lord in amazement.  I had called him needing reassurance and prayer for something and I ended up getting one of the best spiritual pep talks ever!  I didn't have to call my preacher.  Didn't have to call a Christian mentor.  Didn't have to call one of the "church ladies."  I simply called my husband.  My life partner.  The one created especially for me by the Lord Himself.  

This change didn't happen by accident.  We have intentionally immersed ourselves in a family of believers who have continually uplifted and prayed for us.  We've done the "Christian thing" even when the last thing we felt was "Christ-like."  We have intentionally chosen to leave some things that we loved behind, simply because they weren't God-honoring or His will for our lives.  Moreover, God is still pruning us as individuals and as a partnership.    

We are by no means perfect.  There is still A LOT of refining still to take place, but thank God He has brought us this far!  I can't wait to see what the next ten years will bring in our relationship--we've come a long way and we're ready to travel even further.   

He Can't Help Himself

During VBS, Jackson's inner-drummer couldn't be contained.  So while all the other kids did the motions to the songs, Jackson drummed.  

Read the Chart

One of the first things we do every single time Clayton checks into the hospital is tell every new attending doc, resident, med student, and nurse his medical history.  Fortunately, I have most of this written down in a form that was put together for us by the Medical Home Clinic we attend.  When I'm particularly tired of going over the details of the last ten years, I usually just hand over that set of papers for them to read themselves.  

I understand that Clayton isn't the only patient at ACH.  I understand that doctors and nurses can't remember everyone who comes across their path, along with the medical history of that child.  But for the life of me, I DO NOT understand why they can't take even a small glimpse at his history in the chart before they visit us for the initial time.  WHY is it all typed into the computer if no one ever takes the time to read it?  My main issue comes when we show up on the floor and we are treated as if we've never been to the hospital before.  HELLO?  My son is in a wheelchair.  Surely you can see that he has a history of medical issues?  And even if you couldn't see that, you would know it with a simple glance at his past medical history, which is there for all to see when you pull up his name in the computer.  

Instead we have things like this happen (after we've been in-patient for more than 12 hours):  resident comes in and asks if he is eating and drinking as normal.  READ THE CHART.  Of course he is eating and drinking as normal, because he is tube fed and I am still feeding him as usual.  :/  

Has he had any seizures or episodes?  READ THE CHART.  I've told everyone we've spoken to that he doesn't normally have seizures that we can see, we are here to see if we are missing something while he is asleep.  Of course we won't even know the answer to that now because the doc insisted on ordering that he be checked on each hour throughout the night, which meant that he DIDN'T sleep.  Which pretty much cancels out any possible results we would have gotten from the EEG. 

Nurse comes in (a nurse that has cared for Clayton many times in the past, mind you):  I've got his medication.  Oh, I guess I need a slip-tip for his g-tube . . . (staring at Clayton like a monkey staring at a math problem).  Again, how is this news that he has a g-tube when you have cared for Clayton multiple times and you have the chart right in front of you??  

I've discussed this issue with some of the doctors that we deal with the most, and they agree that for "frequent fliers" there are several breakdowns in communication.  Almost all of the medical staff in the NICU and PICU go above and beyond in making parents feel "at home" as much as it can be possible. They are the best at recognizing the journey families with chronically ill children are on.  But for some reason, that feeling does not exist on the floor.  This was why the "Medical Home Clinic" was started in the first place, but that was over five years ago, and I haven't seen that much improvement in streamlined care for the frequent fliers.  

I admit that my irritability level goes way up just being at the hospital, but it would be nice if some of the medical staff would go out of their way to read Clayton's history and recognize a family that has been down this road a bazillion times, and treat us as such. 

Rant over.  :/ 

Why I Still Go to the Cemetery

When Shawn died, I knew that his soul was immediately in the presence of our God.  I instinctively knew that his body had simply been an earthly vessel that was temporary to this life.

But that didn't stop me from loving that physical body . . . one of the three little bodies that is a unique combination of the love that Brian and I share.  

Even in the beginning of my grief, I never made it a habit to visit the cemetery often.  The intellectual part of my being couldn't rationalize spending much of any time at his graveside, and my faith still holds that he is with the Father.

But then there are those days.  Those days when the momma in me needs to mother him.  Needs to do something for him!  Just as I do the small things for Clayton and Jackson, the mother in me craves to do those tasks for Shawn.   But there are no tasks to be done.

No shirt collar to be turned down.  

No mouth to be wiped.  

No boo-boo to kiss.  

No high-five to be given after a job well done.  

No "I love you's" passed in conversation.  

Just nothing.  

Simply put, he doesn't need me where he is at.  He is with the Almighty Caretaker of the universe!

But his momma needs him.  Needs to care for him in the physical ways that mommas do.  I was so desperate in the early years.  I literally pictured myself digging the grave up just so I could hold and touch him one last time.  Just one last "let me make sure you're okay before I leave you on your own" moment. 

I'm certainly past those desperate moments these days, but my idle hands still must do.

For eight years, my Grandmother faithfully renewed the flowers on Shawn's grave.  I asked her in the very beginning to be my stand in because emotionally I simply couldn't handle the task. However, a couple of years ago I felt like I was finally ready to take on the job of keeping his flowers refreshed.  I cried the whole time I was in Hobby Lobby buying the flowers.  But once I was done, I felt a renewed sense of spirit.  I polished his marker and cleaned up the neglected ones around it.  And every few months, I repeat the same little routine.  A time when I can reflect while I let my hands do a mother's work.  

Unfolding

Some people see miracles happen instantaneously.  We've been lucky enough to watch a miracle slowly unfold daily before our very eyes.  I distinctly remember at least three occasions when doctors sat us down for "the talk" about Clayton.  "He's getting worse."  "This is as bad as we've seen."  "There's nothing else we can do for him."  "You need to prepare yourself."  We needed to prepare ourselves alright.  Prepare ourselves for a life with an extraordinary little boy who is a daily witness to God's power in each of us.  

For ten years, he has defied the odds and blossomed in spite of his condition and diagnoses.  

And to that, I say "Praise God!," and a very Happy Birthday to Clayton!  

2003: 

2004:

2005:

2006:

2007:

2008:

2009:

 2010:

2011:

2012:

2013:

 But those who hope in the Lord

    will renew their strength.  They will soar on wings like eagles;    they will run and not grow weary,    they will walk and not be faint.

Is. 40:31

A Week in the Life of a Boy

Jackson's had a rough week.  It started last Thursday when he was in timeout and this BB like object "jumped from the carpet and into his ear."  It was a miracle to say the least.  A miracle that warranted a visit to the doctor to get it removed.  

Then on Wednesday, after been told countless times to stop running in the house, he ran smack dab into the door facing (easy to do when you're wearing a hat over your eyes).  Within minutes of the collision, he had a knot on his forehead that popped out at least an inch and a half.  

And then to top it all off, that very same night, he got what I hope is his first and last motorcycle burn.  I'm sure you're all of aware of that elusive muffler burn that happens so often when riding (I've got a scar myself to show my familiarity with it).   

Fortunately, he bounces back quickly and doesn't let crazy stuff like this get him down.  UNfortunately, I see a lot more of these incidents in our future . . . these stories are reminiscent of stories I've heard from Brian's childhood, so I get the feeling we have a lot more to come.

Photo Friday

Since I haven't shared Jackson's birthday photos, I figured better late than never.  I know there are some of you out there that don't care when I post them, as long as you get to see this precious little face. :)

I had a little bit of mom guilt because I accidentally bought the trick candles.  He was more than a little frustrated that he couldn't get those candles out!

The present for both Jackson and for our FAMILY:  quieter drums!  He had a real set of drums that almost drove us batty--we are thankful that we have gained a little bit of our sanity back with the volume control on these electronic drums!

 Kids had a blast!

 The birthday boy taking his turn driving:

Cutest little four year old ever!

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.  

Take Me to The King

I created this slideshow soon after our 2013 Prayer Encounter.  Our congregation's journey into corporate prayer has come full circle--our people are better for it, and we see God working in marvelous ways.  

Only at His feet can we find true comfort and rest.  I pray that you, dear blog reader, regularly seek Him out.  

In Which We Say Goodbye

Well, it's 11:30 on Sunday night and the last thing I need to be doing is blogging (although a few of you out there are probably glad to see some signs of life on the ole' blog).  I've got a photo session tomorrow, invoices to send, and photos to edit.  And yet here I sit, trying somehow to give voice to my thoughts on the day that is almost over.  And instead of voice, all I have is tears.   

Today was our pastor's last day at our church.  He has pastored our church for the last 17 years and pastored Brian and me for the last 12 of those.  Yes, pastors come and go from churches.  They move around in ministry and congregations survive, just as ours will.  But as any significant life change does, this day has me reflecting on years passed.  Under Pastor Tim's leadership, Brian and I have grown both deeper and wider in our spiritual walk.  And he has taught us that the "preacher" can also be your dear friend. 

My tears have flowed freely tonight.  Yes, it is because I will miss our teacher and our friends.  But mostly it is simply because my mind keeps going back to The Day My World Changed.  I keep going back to that horridly uncomfortable room we said goodbye to Shawn in.  There we sat with our dead baby, shocked with the magnitude of the situation.  A handful of friends and family came in and out as we tried to share his little body with our loved ones.  The last to come in was Pastor Tim.  He sat with us as we held our first born.  Funeral Talk.  Our Baby is Dead Talk.  Then slowly it moved to Anything Talk.  Anything to keep from having to get up and hand Shawn back to the nurse.  I remember Tim graciously took photos of the three of us.  A mother.  A father.  A baby.  Photos that will always be burned in my memory, as they embody every emotion I've ever felt as a human being.  You just never forget the person that is present for that moment in your life.  And while we've had countless joyous times with Tim and Jamie, my heart has been stuck in that little room for most of the day.  

Tim and Jamie have been present during so many of our trials, tribulations, and celebrations.  A new chapter begins for us as we learn to navigate these moments without our friends physically at our side.  We will miss their words of encouragement and bent ears, but we are thankful they will still be by our sides in spirit as we travel on in this journey called life.  

Four Years Old

Happy Birthday to my baby, Sweet Jackson.

Truth be told, he isn't quite the baby anymore . . . he pretty much wants to do most things on his own and his own way; but when he wakes in the morning, and it's just us two, I love hearing the words, "Momma, I want you to hold me."  So we snuggle for a bit each morning before we get up to greet the day.  :)  I'm hoping he won't grow out of the habit of needing his momma to hold him anytime soon.  

I'm Sensing a Pattern

2006:  Tuesday after Memorial Day.  Clayton had his first seizure.  It was one of the scariest moments of my life.  He had another one a couple of months after that that scared us just as equally, if not more.  It was the second one that officially put him in the "has seizures" category.

2010:  Friday before Memorial Day.  (My birthday)  Clayton woke in the night with seizure activity.  Doctors treated it as a shunt malfunction; but knowing what we know now, and the debacle that unfolded after his shunt was "fixed," it was most likely a seizure just like those in 2006.

2013:  Friday before Memorial Day.  Clayton fell asleep around 10:30/10:40.  Jackson and I were both laying in the bed with him.  Sometime before or around 11:00, Clayton's left arm shot up and I immediately started asking him if he was alright.  When I got no response I realized something was very wrong.  I'm pretty sure I knocked a sleeping Jackson out of the bed running to get Brian, who was across the house.  :(  By the time we got the lights on and figured out what was happening, Clayton was in a full tonic-clonic seizure.  It waned for just a bit as the firefighters arrived, and Clayton was able to slightly respond to them by nodding his head in response to their questions and directives.  It only lasted a couple of minutes though, as he began seizing again as we all watched.  It wasn't quite as physically violent the second time, but still just as disturbing.  Watching his eyes become completely lifeless as they darted back and forth was almost too much to take.  

Clayton's seizure continued for almost two more hours.  After two doses of Valium, two doses of Ativan, and a thousand extra milligrams of his regular seizure medicine, he finally started coming out of it, just in time to fight the nurses as they started a second IV.  I hated that he was fighting them (for their sake), but boy was I glad to see that personality emerging under the fog that he was in!

We had a great experience in the ER (is that an oxymoron?), and the nurses and doctors we dealt with were extremely diligent in their care of Clayton and on explaining more in-depth the seizure phenomenon.  (Since it looks as if, indeed, Clayton does have a full blown seizure disorder, given his history, we were full of questions).

As of yesterday afternoon, Clayton was finally starting to smile just a bit more often than we had seen the whole weekend.  He is still pretty drained, and although he thinks he wants to do something, once he gets into it, he realizes his body just doesn't have the strength to carry through.  I'm hoping another day off from therapy today will give him the extra rest he needs to get back into the swing of things.

And in the meantime, what the heck does he have against Memorial Day weekend?!  It's almost cyclical the way these have happened . . .

2006:  2 3/4 years after brain injury

2010:  4 years since last seizure

2013:   3 years since last seizure

It's almost as if his growth pattern includes having a major seizure as a rite of passage into the next phase?  But then again, I wonder if we've missed any since he has begun sleeping more and more often through the night by himself.  At any rate, I'm not much on coincidences, and you can guarantee that this time next year, I'll be on guard more than ever!!