Only Jesus....

Only Jesus helps me survive some mornings...well, he helps us survive EVERY morning, but you know what I mean.  The day after a school holiday...the girl in the house woke up really grumpy and whiny...not two bites into her breakfast, she knocks over her milk...of course it spills over to Carson's book and through the seam in the table...Holly, our Golden Retriever, was Johnny on the spot to help clean it up.  I'll be honest, some mornings that would be enough to just set me back for the day.  It's an accident, and it's easily fixable..but wrangling three kids for breakfast, school, and morning chores isn't an easy task, and sometimes it's easy to get lost in the busy-ness of the morning.  That morning was ok...a few dry and wet small towels, some cleaning spray after Holly had done her part and the table was like "new" again.  

Not 5 minutes later that same morning, I've got one burping out of the wrong end...one laughing...and the girl is now holding her nose and whining.  One thing that Effie hates...it's that specific type of "burping".  Meanwhile, I'm putting up clean dishes, making lunches, making eggs and bacon for me and the husband who has one leg out the door...oh and I'm still in my pajamas.  I finally get kids off to their rooms to attempt to get ready... I retreat to mine and switch the radio over to IHeart Radio...Third Day station...it always seems to pick me up when mornings are tough.  Today is no different, first song helps keep me grounded when one of the littles lands a hay-maker to the one who fanned one of those booty belches his way.  I. REALLY. DO NOT.MAKE.THIS.STUFF UP.  I head out to redirect those two crazy boys in the house.  We make it out of the house in time and with no yelling.  That in and of itself deserves some sort of an award occasionally.

I've got just the two boys...kuddos and standing ovation to the mom's who have only boys...Effie helps break up the non-sense and constant penis talk...you think I'm joking...I've had one laugh and act like his penis is a joystick, a helicopter...whatever you can name.  Last week, after the boys returned from squirrel hunting, I walked onto the front porch to find two lifeless squirrels in an embrace...like they were hugging...stiff as a board...ON MY FRONT PORCH.  We won't even talk about the things I find left in the toilet...I always assume they leave it for the viewing pleasure of others.  Thank goodness Effie puts on those occasional concerts and doles out those sweet little hugs to break up the penis monotony.  But thank God for these boys...our house would be a little boring without them here...and baseball is around the corner...my favorite time of the year. 

Last Monday was a school holiday honoring Martin Luther King, Jr...school Tuesday, then snow and ice days for 3 days...kids were excited...parents, that's a toss up.  How many moms were glad to see school back in today?  Show of hands...honestly.  If I had to bet, it would be a tie...half glad to send them back today, and half happy to have them home last week.  For the Ward house, we are happy to be out of school.  Effie has to work twice as hard as the boys, so any break is a welcome break.  Cullen's teacher is probably happy to have him have a snow day since he has more energy than the Energizer Bunny, and Carson is easy-going and is fine with whatever.  As soon as I knew their fingers wouldn't fall off, I was shuffling them outside to play in the snow as much as possible.  A rotating rack in front of the fireplace to dry gloves, hats and jackets kept them in supply of warm stuff and we were in business.  On the first real snow day, we loaded up a make-shift sled and headed out to one of the back pastures for some fun.  At one point on that day, I scooped up some snow into my glove and looked at it closely...I could see the perfect outline of the prettiest snowflake, another reminder of how amazing God really is...such a fragile, yet perfect creation.  

Whether it's a beautiful snow backdrop on our farm, or just trying to stay sane some mornings (and days) keeping kids on track without any screaming, it's only Jesus that keeps me grounded.  And on the days when I don't keep it together (because there are lots of those days too), there's always that bottle of wine in the cabinet.

"Can I have a hug? Because your hugs always make everything better..."

Those are the words I've heard most the last couple of days.  I've sat down and scribbled ideas and notes for the last 3 days trying to find the right words for this entry in the blog...I don't think I've really found them, but I feel like I need to get it going.

Before we ever found out about brain surgery, we found out about Effie's need to wear a scoliosis brace...I dreaded it even then, but after facing surgery, bracing was put on hold and my fears surrounding the brace hit a pause button too.  We scheduled the fitting for early December thinking at least then it would be filed to insurance before the end of the year...that would be good for us since we have already met that great "maximum out of pocket" amount.  When I asked the receptionist about filing it to insurance before December 31, she let me know that they can't bill until we receive the brace and it usually takes about a month to make them, so she didn't think we would get it on this year's benefits...that was a big bummer.  However, we met her orthotist at our initial appointment, and after discussing with her, she scheduled us to return on December 29 to get the brace..she felt confident they would have it ready by then.  Praise God for that because it really saved us a chunk of money...at least for now.  

Lee is her orthotist.  She carefully measured so many places at that appointment nearly a month ago, and with unbelievable technology and intelligence, Effie slipped into her light pink hard shell brace for the first time last week.  The fitting was flawless, and after some trimming, some padding and some practice, we were headed out on the next leg of this adventure.  I've had people ask so many questions about surgery and bracing...I think with the two diagnoses so close together, there were folks that thought her recent surgery repaired everything.  Just to clear up confusion, the surgery she had in November was to repair a Chiari malformation and open up the area so that hopefully, her cerebrospinal fluid will flow more easily, and prevent the buildup of fluid within her spinal cord...the scoliosis was sort of put on the back burner until she recovered.  The two are somewhat related, but that's a longer story.  Now, we start to address the scoliosis itself.  The brace is designed to put pressure on the two curves and attempt to help those curves become more straight and more stable.  The hope is that the brace helps to slow progression...I don't think there's a lot of hope that the brace will actually improve her curve, but rather to slow down how much it continues to curve.  It's a race against time as the higher degree the curve, the faster the curve changes...also against her, is that the closer to puberty she gets, the faster it changes too.  Her brace is a Rigo brace...it's a newer design, rather than the traditional Boston brace.  I don't know the reasoning behind why this one versus the other, except based on Effie's case, the orthotist worked with our pediatric orthopedic physician and decided this was the best option for her. 

22 hours per day.

I don't think many of us have something that we have to do for at least 22 hours per day other than those involuntary actions of breathing and living, but starting this past Friday, Effie started the process of working her way up to 22 hours per day.  I've searched and searched for information from families on what to expect with bracing.  The basics are out there on scoliosis websites, but no real people advice to be found, so while many of this may not interest you, I'm going to do a 30-day "diary" of Effie's experience with her brace.  I'll continue to edit this specific post and I won't re-share it each time, just so I don't bore you:)  My hopes are that at some point, it will help some other family and little girl facing the same challenges.

From the very beginning, one of my biggest fears with bracing was the lack of physical touch when she's wearing it.  We hug...we hug a lot.  I think I've already told this story, but that fear started one morning when I went in to wake Effie.  She always reaches up to hug me when I wake her up in the morning.  The morning after we found out about the need for a brace, I went in to wake her and as she wrapped her arms around my neck, mine went around her little torso...her gown was soft against her soft skin...the perfect amount of squishiness:)  As I felt her body in my hands, my eyes began to sting and I had to finish the hug with a quickness to sneak out of the room before the salty stream of a tear slipped down my face.  I knew in that moment that once she had the brace, and had to wear it the length of time prescribed, that my days of feeling her body in my hands every morning were limited...sadly, I was right.  We are two nights in to wearing it, and just this morning, she took it off, laid it aside and then quickly jumped back under the covers and said "now you can really snuggle me".  She knows.  She doesn't say it, but I'm sure she knows.  

Effie was anxious to get her brace, and already she's handled it like a pro.  She was so attentive when Lee taught her (and us) how to wear the brace.  She will get it on lying down for now, but is told that she'll be flawless at putting it on different ways very soon.  She saved some stickers from Christmas, and already the light pink hard shell of a brace adorns unicorns and glitter stickers. We've been supplied with some specially made undershirts to wear underneath the brace...so far, her normal clothes fit over the brace, although I'm sure jeans will be an adventure.  

Day 1 - She chose to leave the brace in place as we left her fitting appointment - the plan for Day 1 was just 1 hour for the day.  She made it about 30-45 minutes before she started to complain of back pain. She found it super uncomfortable to ride in the car, but the pressure on her curves by which the brace actually works, forced her out of it before the hour was up, she postponed the remaining half hour or so until later evening.  She wore it that evening with little complaints, and was proud of herself for sticking to her schedule.

Day 2 - Eager that morning, she knocked the hour of bracing out first thing.  She was near the hour mark before she started whimpering...we talked, changed positions and toughed it out.  I dreaded the night, but it wasn't as bad as I thought it would be.  She even woke up surprised that she slept most of the time.  

Day 3 - The agenda for the day was two hours in the morning, two in the evening and to wear it through the night...the morning hours went by pretty quickly, but the evening two brought along tears and frustration...the minutes seemed to tick by as reality had set in that soon, she would need to wear it nearly every minute of the day.  Nearing bedtime, she grabbed the brace and with a little help was all tucked into it.  We all sat to watch a movie...she was up and down and just could not find a comfy spot.  She climbed up on the couch with me and attempted to get settled...the hard shell of plastic laying on my chest.  It's so hard to comfort her when she gets upset...she knows she has to wear the brace, so she doesn't ask not to...she does it, but she's frustrated by the magnitude of change that comes along with it. I laid beside her in bed this night listening to her moan and sigh as she turned over...I prayed the night would pass quickly and she would sleep well.  It's New Year's Eve...she didn't stay awake to see it in, but I'm sure she would hope for a better 2018 than what 2017 brought along for her, yet I know that this is God's plan, and I remind myself that He knows best.  

Day 4 - Again the night went better than I expected, but as I mentioned above, she couldn't wait to get the brace off for some real snuggling.  She faced three hours this morning, then two for the afternoon, then again to wear through the night...she'll be wearing it every night from here on out.  She's come to me several times asking "Can I have a hug? Because your hugs always make everything better."  Each time, she's wearing the brace...needing some contact.  Maybe it's such a midwife thing, but I worry so much about this lack of physical touch while wearing the brace.  The hugs are hard...I usually wrap my arms around her body, but now that's replaced with a shell that she actually can't feel through...so I make sure I kiss her and rub her face.  I'm wishing deep down that my hugs really did make everything better...I'm glad for her it soothes her for now.  She started questioning me today on how long she would need to wear the brace...she knows it's years...she also realizes it may not even help.  She asked to be tucked in early tonight because she just couldn't find a comfortable place hanging out in the living room with us.  She has another week before she returns to school, but I worry about it already...removing and reapplying the brace for PE...going to the bathroom...getting frustrated, or just being in pain in the middle of the school day...some of the things on my mind.  I know it'll be fine, it always is.  I need a clone...because if my hugs really do make everything better...I need one.

Day 5 - "I just don't know why this is happening to me."  There are times she doesn't understand why she has to do this...why anyone would have to do this.  Morning and afternoon stretches of wearing the brace are starting to run together, and it's becoming more obvious that she will get little break from the new contraption.  Sleep is ok...if you enjoy bedding down with alligators.  I go back to sleep fairly easily, and I know that my being with her is giving her comfort, so it doesn't bother me to much, but if you require lots of sleep, be aware.

Day 6 - She woke to the morning and decided she would just leave it on through the morning.  She is up to 17 hours per day of wearing the brace, and still handling it much better than me.  A long bath seems to be her go-to when she wants to be out of it for a while.  Thank goodness for that bath-bomb kit she got for Christmas:)

Day 7 - She came out of the brace for just a few minutes while eating breakfast then no complaints to put it back on.  She did tell me she was able to go to the bathroom today while wearing the brace...when I asked her how it went...her response "terrible".  We are up to 18 hours per day...only 4 more to go!  I feel like there are less complaints.  Tonight, though she laid down in my lap during a movie...the brace firmly laying against my thigh and causing some discomfort when I noticed she was asleep.  I didn't move her until Matt could pick her up and tuck her into bed.   I just cannot imagine how uncomfortable it is to wear the brace...tough girl for sure!

Day 8-9 - She doing pretty good...up to 21 1/2 hours per day.  She's still restless at night, but not waking up like she was before.

Day 10 - We saw her neurosurgeon and her orthopedic specialist today.  It went well.  The neurosurgeon said she had no restrictions, but then she asked him about the trampoline...that was a firm "no".  He didn't really mean "no" restrictions, but he promised they would TALK about it when we see him back in May.  That was good enough for Effie.  At the orthopedist, there is no real change in the curve since October, and that is good news for now.  We see him back in six months for another x-ray, then if there are any changes, she may need her MRI sooner than November.  

Day 13 - Effie doesn't wear the brace when she's practicing or playing guitar, honestly, she just hasn't found a comfortable way to do it, so out the door on the way to guitar lesson, she forgot her brace.  We were headed to Perry, GA for an archery tournament just after that, so she got a free pass for extra hours.  We didn't make it home until close to midnight, but she gladly buckled herself back into it and went right to sleep.

Day 18 - GET OUT OF JAIL FREE CARD---Snow day out of school and we spent hours outside and sledding, as snow for us is a rare opportunity.  It wasn't until the afternoon that any of us really noticed that she didn't wear it all day.  Honestly, had I noticed, I probably would have given her a pass to be out of it while were sledding and playing, so no harm done.  After she showered, she was back into it and right back to the routine.  Effie knows the brace is part of her life now, and whatever she does has to include at least the thought of the brace.  I know, though, that life and playing is important too, and sometimes it's just going to be ok for her to be the regular brace-less kid she was before all of this...snow day was that day.

Day 22 - Exercise is another way Effie can forego the brace...on this day, she biked trails and ran track...a little extra time that really counts as brace time, but isn't really.  I told her it won't be too long and she'll be begging me to go on extra runs, just so she can use it as core-building time.  She's not able to build core strength while in the brace, so out of it and exercising is accomplishing something that she needs to do too.

Day 23 - This morning around 2 a.m. Effie came to my room and asked me to come sleep with her...she had a bad dream and wanted me closer...how can I say no to that, so off I went:) . Around 5:30, I woke up and asked her if she wanted me to snuggle her for a little bit...she didn't speak a word, and all I heard was the pulling apart of velcro while she quickly escaped the brace.  She quickly nestled right next to me.  It just goes to show how much our children need our physical hugs and love:)

Bent not broken.

Images from the day we got a scoliosis diagnosis.

Effie listens intently to her orthotist as she gets instructions on her brace.

Effie leans in to her Daddy as she soaks all of this in.

It was a long visit...and while I'm not a big fan of electronics, this appointment needed them...if you're taking other kids with you for this appointment, pack some entertainment.

First fitting

Straps have been applied, and for the first time, Effie is helped into the brace.

She's up for the first time, trying to pinpoint any uncomfortable areas that need more trimming or padding.

"I can do it"

Effie attempts to strap herself in all by herself...she makes quick progress needing little help.

She's all tucked in...seems to be a perfect fit.

Perfect..

Emojis, unicorns and glitter...what more could a girl ask for?!

A little dose of just what we need when we least expect it...

Today was a weird day for me...3 days after Christmas and I think I'm still tired and in a sugar coma from all the goodies I always like to make.  I woke up before anyone else in the house this morning and just didn't sleep well with things on my mind last night...that always makes the day seem super long.  And what's with insomnia in your late 30s...and now 40?! I swear on nights that I'm the most tired, that's when I'm wide awake at 3am...finally doze off at 5 or so, only to need to be up by 6:30 through the week.  Oh well, sleep is for the weak...at least that's what my body must think.  

After walking in this evening, Matt shared their journey with me...I had him running a couple of errands in Hamilton today...paying taxes, renewing business license...all the fun stuff with kids:) . I felt more normal when there was reports of whining, complaining, and losing "it"...you all know what that is. You've heard the saying adult people say when their kids are all grown and their memory is faded...."the days are long but the years are short"...today was a long day...for me and for Matt.

I stopped to grab a couple of things on the way home, and from the minute I walked in, I swear "mama" was called every 2 minutes.  I am so dang happy to see them when I walk in the door EVERY SINGLE time, but I swear some days, I nearly walk right back out after half an hour or so.  Today, that's how I felt, but I had things to do, so I did what any normal mom should do...I poured a glass of wine and I pushed through.  About an hour in to being home, Effie and Cullen were up to something...making "tickets" and putting a private "do not enter" sign on her door.  The lights were out...she was all dressed up in a second-hand dance recital get-up, and it wasn't long before we were all informed that at 7:30 "sharp" we had to attend a "party"...we had to have our ticket and it wasn't optional that we come.  I was intrigued, but felt rushed to finish up some things, and hoped whatever we were in for wouldn't last long.

You see, in the midst of a rough day, I had lost sight of what's important.  It's what I've worked so hard to see this past year...being with my kids and not being pulled in directions that takes me away from family.  I needed that reminder today.  Cullen was her sidekick tonight, so it was me, Carson and Matt that filed in and took a seat in her room.  In the corner of her room was the new karaoke machine that Santa brought...the lights were out, and there was this little girl climbing up on the bed with her microphone...Cullen was her choreographer and sound person.  

The music starts...it's Taylor Swift...because in my house she is Effie's first ,and usually only, choice to listen to.  It's an older album...she likes them all...she has them all.  As the music starts to play, it's dark and I wonder how we are really supposed to see her well...the lights from the karaoke machine are flashing, but that's it...when suddenly as the music gets a little faster and louder, Cullen turns on a flashlight and starts flashing it on the ceiling and around...even using the sequins from a pillow to make scattered lights on the ceiling above her...it's a concert.  They've been in her room for more than an hour secretly working on it...it couldn't be more perfect.  It's not even 30 seconds in, and the feelings of being rushed and frustrated fade away...THIS...this is where I'm supposed to be, and there's nowhere else I'd rather be.  The 513 times that "mama" was called when I walked in the door, suddenly were forgotten and didn't matter.  It didn't take long for my eyes to fill with tears and a salty steam to slip out and roll down my cheek.

It's funny how life works and how God sneaks in a moment like this on days that we really are struggling.  I'm so thankful for the reminder today...I'm thankful for this girl that can dance around on her bed, and for her little brother that likes to hear her sing, and was willing to trigger lights, find songs and flash his flashlight for special effects over her.  It's funny to watch him when she sings...most of the time he's bouncing around, but when she's doing her entertaining, he just sits in wonder.  I'll attempt to load a small video clip of her...in the background you'll see a one-and-only art picture of Effie and Taylor...the great Dylan Ross drew that for a birthday gift for her a couple of years ago when we were gifting her Taylor Swift concert tickets..she loves it.  What she doesn't know yet, is that she'll be going again this year! It'll be a gift for her birthday...actually probably the only gift from us for her birthday...they're floor seats and they didn't give them away.  It was a splurge for a little girl who truly appreciates every gift.  Two years ago, we met Taylor's mom and she invited Effie to a special area...Effie dreams of meeting Taylor...it'll probably never happen, but she keeps dreaming and I'll dream with her...if I can listen to these little concerts and get that dose of just what I need from time to time, maybe one day she'll get that little dose of something special when she least expects it too.

Effie's karaoke version of a Taylor song with the best little brother being her choreographer and sound guy:)

Uploaded by mjwards04 on 2017-12-29.

Video #2---Effie's karaoke version of Taylor's Tim McGraw song:)

Uploaded by mjwards04 on 2017-12-29.

Where it all started...

14 years ago I was in a bad relationship...it was bad for both of us and on nearly every level, it wasn't a relationship at all and love, if it ever existed, had long vainshed.  Life is all about choices, and even then it was my choice to stay.  I have no regrets about that nor any of the circumstances surrounding that relationship.  Everything happens for a reason.  Looking back on my life since then, I believe God held me there in His hand and protected me until I was ready to move on to the next stage of my life.  That stage started in a way I would've never imagined.  Me and Matt have told the story of how we "met" so many times...my kids listened intently not too long ago when I told it over dinner one night.  It seems fitting for me to tell it out loud today, the day that marks the anniversary of the day that we said "I do" to each other.

Valentine's Day 2004 -- Atkinson County Girl's basketball team was in a state playoff game in Pearson, GA.  The guy I was "dating" at the time was that bad relationship, he had no intentions of any Valentine's plans, and rather than facing the day of "love" alone at home, I invited myself to join my best friend to cheer on her alma mater.  Fast forward to the game and we cheered, and then watched the next two teams warm up to play...one was Seminole County High School - I don't recall the other.  Sitting in the stands watching the Seminole team warm up, I kept looking at the coach on that side...so familiar...he looked so much like David Ward, a former principal and coach at my high school.  We attended a small school - I graduated with about 120 classmates, so we all knew each other pretty well.  Coach Ward's wife was my PE teacher in the third grade, their oldest son was my age. They moved away when we were in the 11th grade, and I had not seen them since.  I watched him intently, but could not decide for sure if it was him.  After all, I thought they moved to Florida, so I sort of dismissed it in my mind.  Shortly after the game started, or while waiting on that second game to start, we decided to leave.  As I was walking out of the gym that night, I said to my friend "I just really want to know if that is Coach Ward coaching that team.  Is there a way to find out?"  Her sister walked over and found one of the last programs around and sure enough it had "David Ward" listed as the coach.  I was so excited!  Their oldest son, Matt was a friend of mine throughout school.  I wondered how he was, was he married, did he have kids...what about the other two kids, Allison and Josh...how old were they now?  I thought out loud and said "If that's him, I wonder if Mrs. Maurine came too?".  I walked over the to the closed double doors and peered through the window to see if I could find her in the stands.  I can still picture exactly where she sat that night in the stands, that image of her chatting with friends, having barely changed in the eight years since I had seen her last.  I walked in and down the aisle behind her and politely leaned down to say "Maurine Ward...I bet you don't remember who I am."

Slowly she turned with a surprised look on her face and exclaimed, in the Maurine voice I know so well now, "Julie Deen!".  I sat down and we chatted for a few minutes, catching up on those lost years...Allison was engaged to be married in a few months, Josh was a senior in high school, and Matt had just taken a job near Asheville, NC as the assistant baseball coach at Mars Hill College.  She asked if I was married and of course that was a no...she then asked if was dating anyone...before I could even think I responded, "It's not serious."  Truth be told, I was in a long term relationship that died long ago...I don't have the reasons and answers as to why things happen the way they do, but it was a situation that had been difficult to get out of.  I didn't answer that question with any intent, the answer just flowed out of my mouth.  As a female in her mid-twenties at the time, I think it's easy to get discouraged about "good" men being left in the field, and I think lots of girls "settle" and accept less than they deserve.  Staying with someone in hopes that they change doesn't usually end the way we want...I loved his family, but honestly, he wasn't changing any time soon.  At that moment, none of that was a thought, but looking back, maybe I was surprised there may be good men still left out there.  We talked for a few more moments and exchanged phone numbers with each other, and she gave me Matt's number so we could catch up sometime.  I left the gym that night having no idea what the next few months had in store for me.  Later the next day, I dialed that number...he picked up and my first words were "I bet you'll never guess who this is..." His response immediately was "Julie Deen...my mom already called me."  We spent at least half-hour catching up...I was just accepted into graduate school at Emory in Atlanta, he had started a new job coaching and was recently out of a relationship.  We decided we would try to meet in Atlanta sometime during MLB season for a Braves game and left it at that.  Over the next week, I did lots of soul searching and decided to walk away from a toxic relationship...it took a lot of courage, but decided that I deserved something better...when I shut that door, it felt like a load of bricks from my shoulders.  

A couple of days later, I called Matt back...still no definitive intentions...it went straight to voicemail. For those of you who have never been fortunate enough to get a voicemail from me...don't feel neglected...I. AM. TERRIBLE. at leaving messages.  What a dork! But fifteen minutes later, my phone rang...it was Matt leaving a Lacrosse game to return the call.  That call lasted a little longer than the first.  Emails over the next few days that spilled a few more details of each of our lives were exchanged.  It felt like we had known each other forever.  We nearly did...from 3rd grade til 11th grade, he was a good friend...I watched him play more baseball games that you could count... I knew his family...it was just so comfortable.  It had been 8 years since he moved but it was perfect timing.  Three days after that second phone call, he called one morning.  I had worked 3-11 shift in the hospital the night before...I woke up the phone ringing and when I answered and said "hello?"...He responded "Good morning sunshine!" There's never been a day we haven't talked since. 

About 2 weeks later, I drove up to Due West, SC from Emory to see him coach a game...I saw him for maybe 10 minutes after the game - he gave me a Mars Hill sweatshirt...you'll still see me wearing it:) He was much taller than I remembered...slimmer and very handsome . A hug and goodbye and I was on my drive back home.  The emails and phone calls continued and it was obvious this may be more.  On March 7, I drove up to Mars Hill... stayed for about 3 days and had the time of my life...he surprised me with a John Mayer concert...we ate at Asheville Pizza and Brewing Co...we watched The Last Samurai.  It was a good movie, but the connection between us was even better.  I drove home on that last day and cried nearly all the way home...I knew my heart belonged there.  It's frightening to be so sure about something so new, but I was...no reservations.  I got home late...when I checked my answering machine (ok...that tells my age a bit)...there was a message from him...I still have it recorded on a mini-cassette tape..."Hey it's me...you just left.  I miss you already.  I had a great time and I can't wait to see you again."  The tears I had dried were flowing again.  How could it be that this human could change my whole being in the span of a month?  

Several visits and less than three months later, I packed everything I owned, I had a NC nursing license and a job and moved to be with him.  It was the best and most spontaneous decision I had ever made.  We started planning a wedding...I visited a jeweler to design my ring...December 19, 2004 would be the day.

About 5 weeks after we said those "I dos" I had a positive pregnancy test...it wasn't planned, I was in Graduate school, I was a mess.  4 years later we had moved to another state, bought a house, I had finished grad school and we were welcoming the caboose to our family.

There were so many factors that could've been different...my stopping and really wanting to find out if that was his dad...his mom actually being there...the game was about 2 1/2 hours from their home at the time, and she didn't normally travel that far for games, but this one she attended...the circumstances surrounding both of our situations had been different and yet the same.  

Our story is my very favorite of any I ever hear...but marriage is hard...REALLY hard, but nothing in life that's worth having is easy, right?  My sweet Great-Aunt hand crocheted snowflakes for our wedding to give out to guests...she worked tirelessly on them and every year when I put some on my tree, I am so very thankful for them and what they stand for.  Snowflakes are amazing in that they have no beginning, no end...they could go on forever tracing the lines...there are lots of twists and turns in the middle...some of those turns more graceful and beautiful than others, but when you look at the big picture, the snowflake is just one beautiful creation.  Marriage is like that...ours has been far from perfect...there have been times that I'm sure walking away entered our minds, there has been yelling and fights and slamming doors, there has been nights of sleeping on the couch and days with minimal talking, but in the end the love we have for each other has won out, and I can remember very little reasons we've had any of those big fights.  There were times in my life before Matt that were bad...times that I don't even really remember...I think God helps us not to remember some of the bad things to try and protect us...I'm thankful for that.  Our beginning story is sweet, the middle has ups and downs, and that doesn't change just because we are 13 years in...we work at our marriage, some years we work better at it than others.

Today, 13 years later after marrying my soulmate, I am so thankful for our grade-school friendship...that bridge helped nurture a relationship we never knew would come our way.  I'm thankful him mom traveled to that ballgame...I'm thankful I recognized his dad, thankful for that friend and her sister, and thankful for God protecting and holding me until all the pieces fell into place.

All love stories are beautiful...but ours is my favorite.

Not every moment at Disney is magical...

Earlier this year, I tediously began planning a Disney trip.  The kids have only been once, five years ago, many of those memories for them few and far between.  "It'll be magical"...those were my thoughts because that's what Disney is..., "MAGICAL"!  I may tend to be a tad over obsessed when it comes to planning vacations (...ahem...roll eyes...clear throat...and move on)...this vacation was no different.  We decided early on to tell the kids so they could help decide what they wanted to do and didn't care to do at this age.  They're 8, 9 and 12, so planning and reading about the trip would be fun.  I bought books, made lists, ran up the value of the Post-It note company with how many tabs I may have used.  I didn't make a hard itinerary, and that was really reaching deep in my soul and trying to let go of some of my craziness.  Matt wavered on to go or not to go...it's just so hard with his schedule to get away, but ultimately he decided to go...I was excited to do Disney as a family!  A family picture in front of the castle at Christmas!  Oh my!  What could be better?

As it turns out, not every moment at Disney is magical.  We are a pretty functional family of five...I consider us to be relatively "normal", but Heaven help us on vacation...someone (or maybe all of us) has some sort of meltdown at some point.  You won't see it in the pictures, because frankly in the middle of any of those said meltdowns, I may have wanted to throw my camera onto the tracks of the nearest roller coaster.  At one nice sit down meal, Cullen turned over Matt's water...I know, I know...I hear you now..."they're just kids...they grow up so fast...it's just water"...all of those are very true statements...statements that we are well aware of.  Yet, in the midst of a nice restaurant with huge aquariums all around, and a very active 8-year old that apparently is so competitive that he pushes his dad's hand away, all while trying to cheat in a game on the kid's menu, the ice water glass was knocked over.  Nobody got wet...I quickly and calmly helped clean it up...meanwhile, Matt threatened to frisbee his plate through the aquarium glass when Cullen nearly knocked a second glass over.  It's a good match me and Matt...when he's ready to blow a gasket, I'm usually the calm one...when I'm about to have a mommy meltdown (which honestly is more often the case), he's there to smooth ruffled feathers.  That being said too, on the night of the Mickey's VERY MERRY Christmas party, none of us were feeling very merry...we were tired...we were cranky, and a missing men's belt from the suitcase quickly became a blame game.  As the sweet cast member applied my bracelet for the night, I was trying to just not sit down on the curb and cry at the loss of a "perfect family vacation".  You see, often in life, we want that happy picture...that fakebook...oh, I mean facebook...picture.  The one that everyone looks at and just says "Awe, what a sweet family". 

It would be nice if life worked like that, but either it doesn't, or I know a lot of dysfunctional folks.  Every time I walked by a mom or dad threatening their kids, or a kid just crying and screaming right in the middle of Magic Kingdom, I just smiled.  At Epcot, I even got to hear a "this vacation isn't just about you" from a husband to a wife...my thoughts "thanks for making me feel more normal".  On another note, a little girl around 6 years old in the bathroom yesterday was kicking and hitting her mom...the mom just so calmly squatting and saying to the girl "that isn't nice" as the little girl landed a kick to her mom's shin.  Those aren't exactly the words that would've come out of my mouth, frankly...the folks in line probably would've reached for their camera if that were one of mine...but thank goodness my kids have known better than to hit us...just not something that's tolerated here, but in the middle of Magic Kingdom, I was thankful that wasn't one of mine. 

I'm sure every SINGLE time I got in line for a Disney photographer to take our picture, at least one or four members of my family rejected the idea...occasionally they won, but I wanted my smiling pictures, even if some of our moment's weren't filled with smiles and laughter.  This was typically my "you do what you want...I want pictures"...they'd all clamor in and put on a smile.

DIsney really is amazing...the attention to detail...from the flowers and greenery, to the costumes and floats. Side note here...I only caught glimpses of costumes and floats as the rest of my four couldn't care less.  I drug them to watch Nemo, the musical at Animal Kingdom...it was our first day at Disney.  It was one of my favorite memories from our trip before...you would've thought I took them in to see the ending of Old Yeller.  Initially, I thought they'd grow to love it...I was wrong.  They wanted action...roller coasters...cotton candy!  They've seen Nemo...they know Dory doesn't remember jack-squat, and they couldn't care less if Nemo faked his death to get washed out to the ocean.  I wanted to see Lion King....I was out-voted.  

Day 4 really should've been a break day... a day of rest, a day to grow to love each other again...but when I planned, somehow I missed that part.  We persisted through and because of my go-go-go planning, the not-so-magical moments popped up more often.  What's funny now though is, even after being home just over 24 hours, already the meltdowns, the attitude, the crumby moments, they're already fading.  Mostly now, it's the good memories invading my mind.  I think of it like childbirth...we mostly forget the pain and bad memories (note, I said "mostly"), but instead we remember the first cry, the first time we held them...the good memories invade the bad.  The fireworks overhead as we are riding a roller coaster...that was magical...it's the hugs and kisses...it's the competition on which of us could make the best face for the ride camera ..Matt won that by a landslide most of the time...those are the memories taking over.  In life, I hope the kids remember the times I hugged them endlessly...not the times I lose my ever loving crap and my voice may wake the dead...same for the vacation, I pray they remember the good Disney vacation...the magical one...and at least I have the magical pictures to prove it:)

For those of you with young toddler girls...save your money now...plan a trip.  In my opinion, plan it for when they're between 4 and 6...five years ago, Effie would wait in a line forever to meet Tinkerbell, Snow White or Cinderella.  This trip, she's 9...she didn't want to waste her time..."nope...don't care" she would say.  A big part of me was sad we were past that stage, but another part happily embraces the older stage too.  She had been given the green light by her neurosurgeon to try smaller coasters and if she did ok, try bigger.  We didn't do any upside down loops, but she did fast...she would hate it the first time, then ask to get on it again.  Nearly 6 weeks ago, I wasn't sure this trip would happen after facing brain surgery for her, but she again, proves to us what a fighter she is...so full of life, and we are so very thankful! I am very thankful for my little tribe...they all keep life interesting and this trip was no different.

Even though there was a time during our trip that I swore we would never do it again...we will.  It'll be magical...I just know it!

A new Thanksgiving....

Earlier this week........

It's quiet in our house this morning...no kids up yet, the blower on the wood stove is running...it's chilly, but not cold.  Coffee is in the making!  Last night, I spent the evening with our oldest...we went out and did some grocery shopping for next week, just us.  Effie didn't feel like venturing out for that much yesterday, so it was a good excuse to come back into town with just Carson. I love that time when we get to hang out together...he's a cool kid.  And, he grew a little cooler in my eyes yesterday too....

Without going into detail, his heart of giving and taking care of others...being kind in life, has met a need of a kid and our hearts are so full.  Things that I know we often take for granted every day...food in our fridge, a warm home, clothes that fit...these are things that so many don't always have.  As adults, I think sometimes we skirt around those needs, feeling awkward about helping sometimes, but Carson was insistent that we lend a hand..I'm so glad we did.  

Today.......

This Thanksgiving, my eyes are little clearer than they have been in previous years.  I sit this morning in the bed with Effie, she's still sleeping, cuddled up with her Emily angel...her bed is where I've been since we found out brain surgery was imminent.  I'm not sure who needs who most, Effie or me....often, I think it's the latter that needs her more.  She pretty much tells me when it's time to go to bed these days:) . Props to my husband and kiddos for understanding, and being such a support and help at home!

She's recovering pretty well.  She's able to be up and moving by herself, although she tires a lot quicker than she did.  She'd been looking forward to making desserts, especially pumpkin pie with me for a week, and she did help, but last night had to take breaks intermittently due to back pain...something that has never been an issue before. I think it's just from her not being as active over the last two weeks, but it's a stark reminder that we have come through one hurdle only to face another.  Trying to slow the progression of the scoliosis will be next...a brace fitting in two weeks, and close follow up.  There's not a lot of hope that the brace will slow it enough to avoid surgery, but more to delay surgery until she grows more and is more skeletally mature.  The next 6 months to a year will give us more information.

The number of phone call, texts, messages, gifts, meals, and especially prayers that have came about to us is surreal, and we thank each of you from the very bottom of our hearts.  We've felt those prayers and Effie certainly did!  Her faith and strength through this was so inspirational.  On the day we were getting discharged, I helped her shower...she was sitting in the shower chair, I was standing in front of her.  She was a little chatty that morning from the excitement of going home.  While trying to bathe her, she giggled a laugh that I don't think I'd ever heard the sound of before...just giddy to go home.  Then she looked at me...her eyes glistening as they were filled with tears and said "He heard everybody's prayers, He heard my prayers and we're going home!"  Yes baby He did...she then said in a slightly cracking voice, "I know He has a plan for me."  Choking back tears, I know she's right.  Neither of us still know what that is, but we both believe it entirely.

The recovery process hasn't been easy...she dealt with lots of nausea and vomiting in the hospital...and watching her in so much pain while throwing up...just a feeling of helplessness. She was hooked up to constant monitoring...Matt slept on the couch in the ICU, while I pulled up a chair to the bed and just leaned over to catnap with my head as near to her as possible...every beep, every nurse visit, every wiggle I wanted to be there.  Matt offered and tried to get me to trade...I just couldn't.  A mama understands that. On the second day, we moved to a regular room, still on monitors, and as she would fall asleep, she would become apneic.  Respirations that had been at 15-21, would slowly creep down....11, 9, down to 7 and even 6 at times....alarms sounding, and I'm reaching over to rub her tummy to get her to take a breath without waking her.  Matt, so ever-strong and steady...."I don't like that."  Neither did I.  

Thank God, we made it home after a 4-day hospital stay, it was an adjustment for her to find a comfortable place, but if there's ever been any doubt before, rest assured the couch pretty much belongs to Effie:) She has no problem telling whoever to "scooch-a-pooch" so she can get in what's been her spot since she's been home.  We saw the neurosurgeon on Tuesday and he said she's doing amazing.  She's had a couple of episodes of numbness/tingling, but neither lasted very long and he wasn't really concerned about that.  She's taking ibuprofen for some intermittent headaches, and she can expect those for a bit from what I understand.  He said she has to be in a bubble for about 2 more weeks, then she can try and go for a run with me....Amazing, right?!  I'm sure it'll take some time to build her stamina back up, but if anyone can do it, she can.  I know two brothers that'll be right there with her, cheering her on!

There were so many times in her hospital room that Effie would be struggling with something....pain, nausea, vomiting, needing her bowels to move so we could go home...whatever it was, when she got emotional, you'd see her reach out her hand and ask me and Matt to pray for her right then...standing strong in her belief that prayer does work, and honestly I'm not sure Jesus has ever been celebrated more than over the poo that got us discharge papers!

Prayer didn't work to make the Chiari disappear, it won't work to erase the scoliosis...and actually, not once has that ever been my prayer.  I knew from the diagnosis that this was what we faced, and we needed God's grace and Faith to get through it.  My prayers were more to take care of Effie, to get her through surgery...to keep her with us.  She has a connection to something so much bigger than I can imagine...it's different...it has been since she was around 3 or 4.  That spiritual connection and some of the stories I could tell (and will tell at some point) makes me terrified and reassured all at the same time.  I'm not sure that makes sense to anyone but me, but that's how I've felt for a long time. 

This afternoon, when we have our Thanksgiving, we will go around the table and tell what we are thankful for...there will be choking back of tears, there will be laughs (because if any of you know Cullen, he will have something clever to say), and there will be celebration of life and answered prayers.

Happy Thanksgiving to you all!

We were so fortunate to participate in a Clement Arts Photo Day for family pictures again this year...this one was taken by Hope Johnson.  I scheduled this session just after finding about scoliosis, and it ended up being the day before Effie's brain surgery.  So very thankful for these:)

Walk by faith...

"Well, I will walk by faith
Even when I cannot see it.
Well because this broken road
Prepares Your will for me"

One of our favorite songs, and so fitting for us now.  

Matt and I agreed today that the hardest thing we've had to face in this life so far, was watching our baby girl...the one who wants us near always and hates being alone...roll through a set of double doors into the Operating Room, reaching and crying so softly for us...trying so hard to be brave and needing "just one more hug".  

The doors closed and we just stood there and cried into each other right there in the hallway.  I'm working so hard on walking by faith...but what if God's plan wasn't my prayer...what if I had just sent my daughter into an operating room where it wasn't going to be ok?  The dark thoughts just flood your mind when fear enters, and today there was plenty of that.  But, the amount of praying today for this little girl is on a level I don't think I can even comprehend.  She is so very loved by so many in her 9 years...and also having the prayers of all of those people that love me and her daddy, both sets of grandparents, aunts, uncles, teachers, other students...the list is endless. 

We sat so patiently, but hardly spoke...we just needed to be near to each other until we saw her surgeon.   I hand quilted to occupy my mind (because, let's face it...I'm crazy enough without my mind racing until we saw the doctor.  About two hours after starting surgery, there was the knock we had longed for...the surgery went as he expected, and he felt like this part of our journey would be successful.

Another almost hour goes by before we get to see her, and when I got to see those little peepers just for a second, my heart was like the Grinch...it grew several sizes.  We're now all settled into the Pediatric ICU and have the best nurse.  She's been up once already, and although afraid, she worked her way through it and as I type this, she is resting comfortably and I can't bring myself to take my eyes off of her.  We tell her all the time that she smells like an angel...literally she uses the same shampoo as me, but I never smell that good.  She has a Heaven-scent:)  And even here, she smells good.  Her recovery will have hills and bumps in the road I'm sure, but we are so thankful for this girl...we are so thankful for all of you that have called, messaged, texted, sent gifts and most of all for the prayers.  We can truly feel them, and when I tell Effie how many people are praying for her, she smiles her sweet shy smile only the way she can.  One of the texts I received today told me how the teachers in her grade gathered around her desk this morning before school and prayed for her...writing that even now brings me to tears.  Those teachers were placed in our life for a reason.

We will continue to walk by faith...even on those days we cannot see it.  Please continue to hold my sweet Effie Rose up in prayer in the days and weeks to come. This was the first big obstacle on our little broken road...but I know He has a plan for her in all of this and I'm so thankful that my plan and His were the same today.

She was His first...

About five years ago, maybe when she was around four... Effie was telling us "I'm gonna go see Jesus soon"...those words were followed by her telling us, "I know you'll be sad, but you'll be ok". 

For weeks I put her in a "mommy bubble" and could not hardly let her out of my sight.  I remember posting the comments somewhere and declaring "I'm not ready to give her up...she is mine".  A beloved high school friend was quick to remind me "She was His first".  Those words really hit home, and I knew right away it was true, but it didn't make the thought of her going away any easier.

As we head into a surgery on such a delicate area of my sweet girl, I ask that God take care of her while she's in surgery, and I beg him to keep her here.  The surgery is typically highly successful, and while complication rates are low, this mama is still super anxious.  As the evening has pushed on, I'm speechless.  I just don't have any words...a silent tear slips from my eye every now and then when I let my mind wander.  A dear friend brought a gift over today...wooden prayer crosses with cards.  We each filled out one and tucked it away.  Effie's simply said "Please take away the fear. Amen."  She's been very active today...almost hyper...it has to be a coping mechanism because it's out of character for her.  At dinner, she took one bite and that was it.   Any time quiet let itself in, she started to become anxious...she wants so much to not be afraid.  It's the fear of the unknown that gets us.  I saw that in laboring women too...the fear itself is what lets you lose control.  I'm praying so hard that God eases her fear...this little girl is already so very brave!  I won't be able to go all the way to the OR with her...just to a certain point where they turn a corner.  My prayer is that the medicine they give her in pre-op makes her sleep.  I don't think I can bear to watch her crying in fear rolling away from me.  

I sandwiched an old quilt top together today..something to occupy my time.  We do feel your love and your prayers...each and every one is appreciated so very much!  

He knew.....

13 years ago, while pregnant with Carson, I was placed on bedrest and ended up sitting out of midwifery school at Emory for a couple of semesters until I could return after the birth.  When I returned, I had to join a different group of women and be part of their graduating class.  I was nervous...never been too good with change...but this week one of those dear friends helped alleviate the worry of the kids missing out on trick-or-treating.  She so graciously opened up her home and added two more pieces of chaos to her sweet family while we attended Effie's neurosurgeon appointment and MRI.  Everyone got to trick-or-treat and had a blast.  I was discouraged all those years ago, and so very worried about joining a new group...I didn't know, but He knew.

Right after I found out about Effie's scoliosis, the very next morning just after 8am, I was calling to get her in to a pediatric orthopedic physician as soon as possible.  First hospital system I called was one that had been recommended...big system.  The lady that answered the phone was nice, but seemed preoccupied and even after, through a cracking voice, my telling her about our new scoliosis adventure, she couldn't remember what we were coming for just a couple of minutes later.  I know that sounds trivial, but I needed it to matter to her because it very much mattered to me at that moment.  She went on to have issues getting our insurance information added and it took a while to get an appointment...it would be a couple of weeks.  I made the appointment, but that wouldn't work for me, because, you see...I have zero patience and knew I wanted an appointment for Effie sooner than two weeks.  I called the next group, and this lady was so sweet and seemed more concerned in helping me get in as soon as possible.  She could get us in with a doctor the following Tuesday...yes, that's only five days away!  I scheduled it, then poured over the physician's background...he was young...did he have enough experience?  I was so nervous about us picking the "right one".  We saw him on the 17th and he spent so much time with us and was concerned when he entered our room. He has since had to tell me Effie's MRI was abnormal and listen to Effie cry in the background and listen to me try to keep it together when he told me she would need surgery urgently.   He has texted me to make sure we made it home, and is making room on his schedule to be in the operating room during her surgery.  When I made the appointment, I didn't know if I picked the right physician...but He knew.

Things that we fail to understand, He understands and He already knows.  I have to believe that God has a plan for all of this and there is purpose in it.  

So many people are asking questions, and I am so appreciative of every text, every message, and the questions certainly do not bother me, but I found a website that details what we have going on right now.  For now, we will have surgery for the Chiari and the syrinx, then watch and address the scoliosis after her recovery.  This probably contributed to, if not the complete cause of the scoliosis, but repairing the Chiari is most important right now.  So happy to report the brain MRI didn't reveal any hydrocephalus and just confirmed what we already knew otherwise.

Conquerchiari.org  - - Go to "Overview" under "What is Chiari Malformation?"  It is a great explanation.  She has a Chiari Malformation type 1 with the presence of a very large syrinx.  The doctors and nurse practitioner seem amazed that Effie isn't symptomatic at all.  For that we are so very thankful, as many of the symptoms that appear due to spinal cord compression can last forever.  They are trying to get to the repair before she is symptomatic.  We are also so very thankful for a pediatrician that I love so much, that even though she didn't have to, took the time to run her fingers down Cullen and Effie's spine simply because they wanted to be like their big brother.  She could have very easily reminded them it wasn't time for their screening and not do it, but she did.  She is a woman of God, and she may not have thought twice about it that day, but again, I bet He knew.

I think we are all better now that we have a plan...it's been three weeks to the day since we had that initial diagnosis of scoliosis...now just over a week after Chiari diagnosis, we will turn this girl over to a team of doctors and pray fiercely for steady hands.

Effie always has the sweetest faith and questions or statements about God...tonight almost home, she asked me...

Effie: "Mama, you know what would be really cool?"

Me: "What sweetie?"

Effie: "If during surgery, I could go up to Heaven, look around and then come back"

Me (fighting back tears): "Effie, I'd rather you not"

Effie: "But just go and then come back"

I. can't. even.  What do you say to that?  How do you respond?  I could barely speak, so I just squeezed her hand.  

Brain surgery...who ever thinks this is where they'll be.  She is scheduled for November 6th.  It's soon.  Please join us in constant prayer for the physicians, nurses, anesthesia, for Effie, for Carson and Cullen because they are worried too, for me and for Matt. God knew what a special girl He created...I know she has such a purpose in this life... I can't wait to watch her recover from this and continue her walk of faith in this world.  I don't know what the purpose of all of this is, but I bet He does.

Blessings...

10/30/2017...3 minutes before midnight...I haven't been sleeping well.  When I do sleep, I dream about this whole situation and Effie and this looming surgery.  Last night, I woke up after only being asleep for a little over an hour...it felt like I had been sleeping for 10.  I woke up from a nightmare that the hospital wouldn't proceed with surgery until we paid some huge amount of money up front.  Truth is, I'm not sure how we will pay for all of this, and I cannot possibly imagine what our part will be with insurance.  One thing I am sure of is that it doesn't matter.  We will do whatever we have to do, and do without whatever we have to do without.  Somehow, God has always taken care of us and it just worked out...the financial part of this will too. 

I went to work this morning not knowing when our appointment with the neurosurgeon would be, and worried that I wouldn't hear from them.  So, what do I do?  Well, I call at 8:10 this morning, right after they're open.  Initial relief, when an office staff woman was already working on it turned to worry then.  It's a busy practice?  It was Friday when I found out....is it really on the top of somebody's priority list on a Monday??  How bad is all of this?  The MRI scan looks concerning to me, but that's after googling images and comparing.  I didn't learn how to read MRIs...I learned how to take care of women and their lady parts.  My over anxious inner self now has to wait to hear back from them as to an appointment time.  We have another MRI tomorrow, this time of the brain, so they're trying to see us around that appointment too.  Within the hour, it was scheduled and the day pushed forward....only it felt like it was a time warp.  The girls I work with are amazing and we laugh a lot, but today I put on my mask a day earlier than Halloween.  Honestly, if I wore on the outside how I really felt today, I would probably just be panicking or crying most of the day.  I'm okay when I'm preoccupied, but when it gets quiet, my mind starts to wander.  It didn't help that mid morning, I realized that due to the appointment time and MRI, Effie would be missing Halloween and trick or treating.  I know many would say that wasn't a big deal, but to a 9-year old girl who loves every opportunity to dress up, it really is.  I started devising a plan that would take the boys with us and end with some trick or treating in an Atlanta friend's neighborhood.

I snuck out quickly to grab something light for lunch and immediately when I turned the car on, a song by Laura Story, Blessings, started playing.

It was great.  Truly meant for me to hear it at that moment.  Back in the elevator going up, I was alone.  I lean back on the elevator and all of a sudden I feel like the air has been sucked out of the elevator...felt like I couldn't breathe. I don't like feeling so anxious.  As with getting older the last few years, I certainly am more anxious than before, but this is different.  The fear of the unknown is what always sets folks back.  I found that true in labor and delivery as well...the unknown always made the pain worse.  It's that way for me right now...not knowing exactly what we are facing and exactly how bad her case is, that's the main source of my angst. 

But...we are so blessed in this house, and our situation seems manageable with surgery from what I've read.  I found out today that the same surgeon that we will see today was the one that performed surgery on a friend's son just a couple of years ago.  She said this guy is awesome...that's a blessing.  Cullen, who never wants to pray aloud at dinner, asked to pray Sunday night, he thanked God for the "lovely food, then asked God to help Effie through this surgery.  And Amen. Short and sweet, but what a blessing to hear him want to pray out loud. Blessed to be able to just get in our car and be able to afford to eat and travel to Atlanta.  For that we are blessed.  Blessed to have gotten so many messages and I can truly feel that others are praying for us.  If you're reading this, please keep it up!

Trust Him in the dark....

October 27, 2017......Do you ever look at people when you're out and about?  I mean REALLY look at them?  Ever see anyone upset or wonder why their red, swollen eyes don't meet yours? What are they thinking, or what are their worries?  So often we don't really take in people...

Today, I was the one that purposely didn't meet eyes with strangers...the one that hoped the other strangers wouldn't notice.  I dried my eyes...they were still red and swollen, but I put on the best face I could and carried on.  I didn't want anyone to notice, but if someone had noticed and truly cared and had concern, I would have welcomed a stranger's hug.

Rewind the day...today was the day for Effie's MRI.  She has been anxious about it all week, but today was the day, and she has been talking herself into staying calm to avoid sedation...SHE ROCKED IT!!  I've been convincing myself all week that her MRI would be normal..she doesn't have any classic symptoms of any of the three things they are ruling out, so no worries.  We walked out with our heads held high, and we were both so proud.  

Less than 5 minutes after walking out of lunch, my phone rang and it was an Atlanta number, so I quickly answered.  It was her orthopedic doctor (the one that ordered the MRI) . I didn't catch on to the tone of his voice initially, because "hey!  the MRI is going to be normal"...that's what I thought.  When he asked if I was ok driving for him to talk to me, I knew it was bad news.  She has a Chiari malformation and a syrinx.  My mind was spinning "How?! She's fine.", I thought.  The doctor explained that he had already spoken to a pediatric neurosurgeon that will be seeing us Monday or Tuesday.  He reassured me..."we will take care of her" and tried to explain as much as he could...much of it, I'm sure I couldn't even process.

I'm a straight shooter, if it barks and wags it's tail, I'm going to tell you it's a dog.  My husband and kids never wonder what I'm thinking...I'm sure it's not the best quality, but believe it or not, I'm much better than I used to be.  I needed an honest answer, so I told him I wanted him to be straight with me and I finally asked "what are we looking at?"  His response..."surgery in the next two weeks". There my eyes are stinging again, and Effie began to cry. He again reassured me "we are going to take good care of her".  I know he hears the pain in my voice and his compassion truly touches me...he has since texted me to make sure we made it home ok...my heart is reassured that we are in the right place.

There are so many questions that we have, but we were just so unprepared for this answer.  With just the minimal looking I've done, the decompression surgery looks scary to this mama.  I know God is faithful, and already Effie is the one doing the reassuring that "It will all be ok".  She is so trusting, but earlier when she's asking me "why is this happening to me?", my heart was breaking. 

I didn't go public with this initially, but I feel like this is easier than trying to tell the story over and over.  And, this sweet girl has so many people that love her, and I am so thankful for all of those that prayed and thought of her today.  Her teachers and classmates were all trying to help her in preparing for the MRI, and she couldn't wait to send them the message that she did it without sedation! Please continue to cover all of us in prayer...tonight my heart is broken and so very heavy about so many aspects of all of this.  Right now, she sleeps right beside me and we anxiously wait for her Daddy to get home, and I know he cannot wait to get here and wrap his arms around her.  If you see here out and about in the next short while, give her a hug.

"To trust God it the light is nothing, but trust Him in the dark -- that is faith" ....C.H. Spurgeon

I am going to snuggle her extra tight tonight and trust Him in the dark.

This is the face of the sweetest and strongest girl ever!

Bent....not broken

October 11, 2017...it started out as an off day for me to take all three kids to their well visit to our wonderful pediatrician.  She's in Atlanta, so they got to miss school an extra day after Fall Break, and we were excited to spend the day together and run a few errands.  Our pediatrician had already completed exams for the two littles, and was halfway into Carson's exam, when she explained to him she was going to do his scoliosis screening since he was approaching middle school age.  He was straight as an arrow and before she could move on to something else, Cullen bounced up out of the chair and declared "I want to be screened too!"...Effie quickly followed his lead.  With great patience, our pediatrician happily obliged and had them come over for a quick look.  Cullen was complete and on his way...Effie bent over.  I remember saying to her "Effie, stand up straight...you're not holding your shoulders level"...then it hit me...I looked at our pediatrician and she looked at me--we both saw it.

How did I never see this before?  I'm a nurse midwife...I see patients all the time...I spend a ton of time with Effie...how?  We left the office with a change of plans in search of a Children's Healthcare Radiology facility to get a specific x-ray.  We found it and before we left, we already knew there was some degree of scoliosis...now we just had to wait for the report and the phone call.  It came and with two curves noted, we now have to see a specialist.  Less than a week later, I've managed to get her in to a specialist.  There's so much information it's hard for me to process it all.  I'm up late and up early cramming information...needing to learn anything that I can.  Due to some abnormal reflexes, the scoliosis specialist has ordered an MRI to rule out a spine deformity.  As of the day I'm writing this entry, it's a week away.  Provided the MRI is normal, we will remain with this specialist and another thing he has ordered is a brace which we will be fitted for in 2 weeks.  She will need to wear the brace for 22 hours per day.

I'm struggling with all of this.  My normal pretty positive and cheery spirit is dampened.  I know it could be worse and truly am thankful that it's a diagnosis we can do something about.  But my sweet girl...she has had several things dealt to her...she has struggled more at times than others, but has never waivered in her sweet spirit.  I know God has big plans for her, and that He is preparing her for something that I can't even imagine.  And yet here I sit still praying for understanding and guidance.  This morning I went to wake her...she always stretches out and then reaches for me to hug her...I leaned in to put my arm around her small delicate waist...her body is so soft...so snuggly as always, and suddenly my eyes, filled with tears, burning.  As soon as the brace is made and gets here, how often will I actually get to hug and squeeze her without a hard shell brace in place?  Will that lack of physical touch affect her in the future?  I choked back the tears, kissed her head and quickly darted out to wake the boys before she saw any tears.

Mothering is not for the faint of heart...frankly I think I get it wrong more days than I get it right, but I keep trying.  I am determined to make this diagnosis count for something...I plan to use the blog to document our journey..the good...the bad....and the ugly.  To hopefully help Effie relay how she feels and work to help educate others that may be facing this.  I am determined to turn this into something positive.  We went for our first run since the diagnosis today...it was therapeutic for me to turn that music up and let my mind wander.  But surely I know that although bent, she surely isn't broken.