Merry Christmas 2014

Happy Birthday to Clayton!

It is truly a miracle as we celebrate another year of life for Clayton!  Eleven years of watching him grow and defy the odds and predictions.  Eleven years of his infectious laugh and sweet, intuitive spirit.     It is a complete joy to watch God's plan for his life unfold.  I can't wait to see what miracles occur in his life over the next coming year.  

Photographer in Training

Last fall, I handed Jackson my camera.  And even though the camera was almost as big as he was, he still managed to take a well-composed, in focus head shot of me.  My interest (and his) was piqued. 

So while we toured the Smoky Mountains last week, I thought I would let him give it another go.  I controlled the settings, while I let him concentrate on composition and learning how to focus and manage the camera.  He thinks he is something else when he gets to hold my camera.    

He only took a few shots, but he managed to get the majority of them in focus, which is a feat when holding a camera that large.  I picked out some of my favorites.  

(Ignore the road weary look in this last one!)

I think he has a bit of potential, but I'm his Momma of course.  What say you?  :)

I'm Tired

Disclaimer:  This post is a selfish pity party.  I will complain, I will gripe, I will vent.  I simply need to let this all go so that I don't go crazy on myself.  If you don't like whining, you might want to skip this post.



I am tired.

I don't even know what else to say anymore but that.  I am simply tired.  None of the things that I have to do as a special needs mom is especially hard, but when you add them all up, and throw in the monotony of it all, it just wears a person down after a number of years.

Anything is endurable for a season.  You think to yourself, "I got this, it's only for X amount of time."  But as I look into the future, I don't see relief.  I see it getting harder.  I see Brian and me getting older, and I see Clayton's needs increasing.  And I get tired all over again.

I am tired of something as simple as jumping in the car and running to the store being an ordeal.  Yes, I get jealous of the other 90% of the population who can trust their kids to get themselves into the car, buckle up, and not have to worry about loading and unloading a chair.

I am tired of looking at everything through "wheelchair eyes."  I am tired of seeing stairs, obstacles, and going "around."  I am tired of the separation from the rest of the group that a wheelchair forces in many situations.  (And if I'm tired of it, how annoyed Clayton must be?!)

I am SICK and tired of therapy.  Our entire schedule revolves around therapy, which is imperative to Clayton's well-being.  BUT DANG.  IT. GETS. OLD.  It interrupts our school day, field trips, and a normal "homeschool" routine.  Not to mention the drama that we deal with at the clinic.  UGH.

I am tired of lifting.  My shoulder hurts.  My back hurts.  I am tired of planning my steps and the logistics of things by how many times I'm going to have to lift Clayton.

I am tired of planning the logistics of shielding Clayton's bathroom issues from other people (mainly kids).  The older he gets, the harder it is, and I flat out don't know how we'll be able to do it when he's 20.  And there's only a select number of people who I trust to help me with that issue, and I hate to even ask most of them.

I am tired of watching other couples around us plan things for themselves, since childcare is relatively simple for them.  I am tired of watching the clock if I do drop Clayton off anywhere because I know the person that does keep him can't do the above mentioned lifting and/or bathroom things for very long.

I am tired of feeling guilty for feeling tired!  The moment I start getting on one of these pity parties,  I immediately remind myself that life without these problems would mean life without Clayton.  And I can't even bear that thought!!!  I just wish I could shake this funk that I am in!   I so wish God would show me something that reminds me that He is working it out.  My mind knows He is, but my heart simply isn't feeling it right now.  

My Big Five Year Old

I can't even believe that it's been five years since this precious boy came into our lives.  So cliche', but SO TRUE!  He is smart beyond his years and I'm in awe each day at how the Lord created such a special and unique child.  In fact, he "designed" his birthday cake this year and described in detail to the bakery how he wanted it to look.  He was pretty stoked when he saw the final product . . . "IT'S AWESOME!!"

"Momma, do you want to know why I was smiling when everyone was singing to me?  I was saying 'thank you' to everyone for coming to my party."

Mother's Teachers

Mother's Day is a tough one for me.  And the tears have definitely flowed this week as I've reflected on my years as a mother and the lives of my babies.  However, today the tears seemed to have dried up and I'm considering how blessed I am to have such inspirational little teachers in my life.  

 

Shawn taught me that I can indeed survive "the worst thing."  He also taught me that life is short, and if his two week lifespan can be a witness to God's love and mercy, then what am I going to do with my many years on this earth?  It's up to me not to waste away in grief and despair, but to push forward in the hope of Heaven.

Clayton is a daily teacher of perseverance and acceptance.  He is truly one of the happiest human beings I know.  We all look and think "how horrible, he can't walk, he can't eat, etc."  But the truth is, he has taken his lot in life and learned to live to the fullest with what the Lord has given him.  We should all become better at that.  

Jackson has taught me that it wasn't my fault.  His life is proof that I can birth a typical child and that I'm not some freak of nature that can't do it right.  And even if that isn't important to anyone else, it's been a major source of healing for me.  Moreover, my daily walk with Jackson is continually teaching me that I need to reach higher and strive for holier living, because without the help of the Holy Spirit, mothering a headstrong four year old can drain and stretch me to my limit.  

I can only hope that I become a faster learner than I've sometimes been in the past.  That little bit of stubbornness I fight in Jackson seems to have come honestly.  I pray that their teaching of me evolves into me becoming better and better at setting a Christ-like example in our home.  

Triggering Event

So I don't know if I've hidden it well or not, but this whole Tornado Event on April 27th has thrown me for an emotional loop.  Which sounds so selfish when I actually say it out loud.  Here I sit in my comfortable home, my babies and husband snoozing the night away; while the victims of the tornados have no home to be in and some will never have their loved ones in the next room again.  

The shear amount of grief overtakes me when something tragic like this happens.  It's as if the scab of my own wound is ripped off once again as I'm filled with empathy for these victims.

No, I've never had all of my material things virtually wiped off the face of the earth.

But I do know the feeling that comes with Life As You've Planned It suddenly going completely off course.

The feeling of standing at the crossroads and having to decide--will this swallow me whole or will I overcome?  

The feeling of having your heart completely emptied so that it can be filled to overflowing with God Himself.  

My heart goes out to these families who have a long journey ahead.  The long journey to a "new normal."  If there even is such a thing.  Because here I am ten years out and I'm still obviously searching for a way to navigate around the pain.

But I just don't think it can be avoided sometimes.

So I find myself hitting it head on and crying the tears.

Again.  

Eventually cycling back into the routines of life as the wound begins to heal over once more.  

A Strange Kind of Comfort Zone

My Grandfather has been hospitalized over the last week and a half.  And tonight as I drove away from a visit, I had one of those epiphanies that has really always been there, but it only then came to the surface of my brain.

I am more comfortable in a hospital setting than I will ever be in a mall shopping for clothes, or even a grand party celebrating some societal milestone.  And to take it even one step further, a funeral home is even more comfortable to me than a Junior League reception would ever be.  [Which is probably why I've never been invited nor inquired about Junior League membership . . .] 

My baptism by fire into the world of hospitals and dying children has given me a strange perspective on the medical world and the reality of death itself.  Hospitals don't scare me in the least.  I walk in and I speak the language.  I know how to get something done if it isn't.  I know how to sit and be until the resolutions come.  It's never easy, that is for sure.  But a learned skill nonetheless . . . one that only comes with plenty of practice and repetition.  

I don't even know what weird category of person this trait puts me into, but I'm pretty positive it falls under the Unique But Awkward classification.  

And that's something I'm getting more and more used to these days.  :)

Life is Happening

Well, life is happening and that means the blog gets neglected more and more.  It's still my venue for sharing when I finally get around to doing so, and I for sure wanted to share the video of Clayton's latest play.  This play didn't go as well, in that Clayton noticed his Granny sitting on the front row and was so nervous and emotional, that he broke out in a sob!  He then cried for my Grandmother and got fixated on her not being there.  And even though I was bummed that he didn't say his lines, he did get some laughs from the audience when he blurted out his famous "I'M HOT."  Another new famous line I didn't get on tape was his response to Ms. Lynne who was trying to console him and called him "Baby Doll."  He quickly yelled back, "DON'T CALL ME BABY DOLL!"

   

Major props to his helper Kylie who didn't let the meltdown phase her one bit!  

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