There's Not Place I'll Go, You've Not Already Stood

Lauren Daigle on shuffle and replay…I feel like that’s all I’ve listened to the last few months. It’s on in my van, in my office, even my running playlists have been replaced by her soul touching lyrics. Not typical running songs maybe, but I feel closer to God when I run than so many other times. Somehow, her words calm the anxiety, and help center my eyes back to God, and putting all trust in Him.

Effie has a doctor’s appointment tomorrow morning…last night, she wanted me to snuggle in her bed, and I happily obliged. I went to bed earlier than usual, and slept well except that I dreamed for what seemed like all night…it was ALL about this appointment tomorrow. Sadly, I think she feels my anxiety, the angst in my soul worrying about what these x-rays will show. Last visit, we were so happy to hear that her curve actually measured less - kudos to Effie for being an avid brace wearer and such a strong little girl. This time, I feel like she’s grown a bit more, and with growth comes more risk of that scoliosis curvature increasing. What if it does increase, and surgery comes up as a bigger possibility? What if when she does have surgery, she has to have rods? There’s a newer type of surgery that is called tethering…supposed to be less invasive, and if we stay steady like’s she’s done, that one sounds like it could a possibility instead…and of course we would love to avoid surgery all together, although that’s not likely with her situation.

She knew I was worried this morning, and although she’s a little worried, she was telling me that it would be fine. “I’m wearing my brace. I’m working out and running…it’s going to be better. I’ll be fine.”, she says with all the certainty that I wish I had.

One of Lauren Daigle’s songs, “Everything”, in the very first verse says this:

“Even the sparrow has a place to lay it’s head, so why would I let worries steal my breath?”

That gets me EVERY.SINGLE.TIME. If something as tiny as a wild sparrow has a place to sleep in this massive world, and that God made sure that tiny bird was taken care of…how could I let worry take my breath away?

Worry and some anxiety gets me even when I don’t want it to…it just does. Even when I know better.

This year, Effie made the Middle School Cross Country team…something she’s been dreaming of for over a year! Watching her run this season has been such a blessing. So many things in her life she has to work so hard at, and even though running and training requires work, she loves it so much, and the willingness to work at it and the ease at which it comes for her has been amazing to watch unfold. She has consistently been one of her team’s top runners - making friends with her older teammates, and seeming to fit it so well. The team aspect as a whole has been so comforting.

My dread for worsening of her spine curvature isn’t surgery really, although I would love for her not to go through it, but rather I know that if and when she has to do it, that it will sideline her for a while from one of the only things that has come so naturally for her…she loves it, and I don’t want her to ever lose it.

When she runs, it is without a brace, and that time that she’s running and working out counts just like she was wearing her brace, so those 22 hours she’s supposed to be in it, gets cut down when she’s active. As much as I would’ve loved for her to avoid dealing with any of this, I have come to believe that all of this is a blessing to her. She knows that in order to have a chance at avoiding major surgery, that she has to stay active…keep her core strong. She knows that not wearing her brace isn’t a choice that she can make. She knows that running has helped her, and she can’t just stop. She loves it, and the people she runs with…in Columbus and on her team…they seem to love her too. I’m sure some of them don’t know her story, but many of them do, and I think they admire her for it. I know I do.

I don’t know why I write this tonight, except to tell you where she is…and to ask you to say a prayer for her tonight. If you want to throw one in for a worrying mama, I won’t argue with you for that either. I know my anxiety about this if for naught…God has this under control. Lauren Daigle has another song called “Trust in You”…my favorite words in that song…

“There''s not a place I’ll go, you’ve not already stood.” God already knows what tomorrows x-rays will show, and for whatever that is, I know we will trust in His plan…but man, the waiting is so tough.

Faith….

It isn’t a feeling. It’s a choice to trust God even when the road ahead seems uncertain. (Davewillis.org)

Circle back...

It's hard to think back and gauge when Effie started running...somehow she ended up running a mile in my hometown with my parents several years ago...and I think, won the 1-mile overall female that year… surprising us!  Later that year, the boys played football in the middle of Columbus, and around that collection of fields, was a fantastic running/walking track.  For anyone that knows me, you'd know I can't sit still for very long.  The practices were long, and I needed to exercise anyway.  I remember asking Effie if she wanted to run while they practiced, and she answered an emphatic "yes!".  It was sometime after that I devised a plan for the two of us to walk/run the track while the boys practiced.  Gradually we would work our way up to running longer distances.  There were definitely days that she'd rather not run...days that she may have cried a little, but most days, we managed to push through, and both of us always felt better for it after.  It's funny to me...on the days I really didn't feel like running, she was pushing me...and on the days that she wasn't as up to it, I pushed her...it was a good team effort. 

Occasionally there was a 5k, and she did well for her age...I was proud of her for going that far.  Then, 2017, she started youth track in our county.  While trying to figure out what she would run best, the first unofficial meet, they had her in a sprint group...I think she cried the whole time...I thought “Oh Lord, what have we signed up for?”…it was distance from that point on...and you would never be able to convince her to do anything else.  She did pretty good for her first year, and again, we were proud of her attitude and what she was capable of at her age.  We continued to run some in off-season, and soon, it seemed like she was leaving me in the dust...and when I say "it seemed"...she WAS...and would laugh about it.  I would have to look for places to run where she could run ahead of me...if we ran on the road, she of course had to run slower to stay with me... and she hated the slower pace.

In the fall of 2017, she had her setback, and I just knew brain surgery would sideline her track season, but as she would work back to running, 2018 became her second year of youth track...she loved running and had seemed to find her niche.  Carson has always been the most athletic in the family...but soon, he even found out, that when it comes to running distance, he didn't stand a chance with Effie.  As much as track helped cement how much she loved running, she doesn't love running in circles...she would always rather run on a new track or a trail...she likes something different…new scenery.  She made it to state last year for her group, but missed placing in state by what I think was just a few seconds...she was devastated, but some failure is good for kids in my opinion, and her recovering from that to be successful now has done big things for her confidence level. 

We continued to run, and heading into the summer of 2018, I decided to sign her up for a Summer Series with a local running group...it included five races...you have to run at least four, one of which was a 5-miler,  to be qualified for awards at the end of the series.  I signed both of us up...I don't run to win anything...I'm really not that fast...I run because running with Effie is by far, one of my most favorite things in life at this season of life.  It also helps to hold me accountable to run with her through the week, and maintain a level of exercise in the midst of this crazy, busy life.  

We combined the Summer Series with many additional races, and in most of those, she placed in the top 3 for her age group.  Her most impressive finish to me was at the end of April, when she finished first in her age group in a 5K with a time of 23:36, but placed 18th out of 219 runners total...men included.  When I look back at that statistic, it blows my mind. 

As many of you know, prior to that 2018 track season, a routine well visit turned into the perfect storm of chaos for us...three weeks after that visit, my husband and I would watch her roll into the OR to have brain surgery. Surgery to decompress a Chiari Malformation and relieve pressure that had built up in her spinal cord...something we had no idea of prior to that pediatrician visit.  Her success in running faced so many questions in my mind...would she be the same after surgery...would she run again...would she want to?  The doctors assured us, it was possible, but then, we also had to tackle scoliosis head-on after recovery from surgery.  She would be wearing a big brace 22 hours a day...how well would she deal with this?  So many questions, and so few answers.  Recovery was H.A.R.D.   It's excruciating watching your child hurt, and being so unable to calm or sooth them.  Then one day, she turned a corner...I arrived home from work one afternoon, and she was up walking unassisted!  After surgery, she kept stepping over her feet...what I mean by that is that she kept crossing them over each other when she took steps...on the inside, I was internally terrified.  She certainly can't run THAT way.  Our orthopedic and neurosurgeon said to give it time.  We held the faith and just kept believing it would return to normal. And it did.

Just six weeks after brain surgery, we ran our first mile after surgery...she was slower than she had been, but she felt great and still beat the brakes off of my time!  It was a near freezing 42 degrees outside...her nose was red and cold...but SHE WAS RUNNING.  My heart could just explode.  I've probably told that story already on my blog someplace, but somehow it slips in here again.  It was a turning point for what those next thirteen months have held, and we couldn't be more thankful. 

Effie has had anxiety for years, and she used to cry and get super anxious when we would be preparing to line up to run a 5K...almost into anxiety attack mode.  Then in April for that run, a friend joined us...not even 1/2 mile into that run, I could no longer see her.  From that day forward, there's been no real anxiety before races...we usually go for a slow warm up run, then when they call the runners to the line, she grabs me, kisses me and says "I'll see you at the end!"...and her tiny little body will often put herself in the front area of the group of runners...and she can certainly hold her own in that spot.  Each race, I think builds her confidence even more, and this past weekend, we ran a half-marathon…something she had been contemplating in her mind, although until recently, she really doubted she could go that far. She finished fourth in her age group at 2 hours and 5 minutes…she’s ten years old and weighs 55 pounds. The running community in Columbus is so strong, and again we are able to see that Effie is right where God would have her be right now…surrounded by a great group of folks that love running as well…and so many of them are so supportive to Effie…cheering her along the way when I can’t keep up (which is every time by the way;)) We’ve added youth training workouts this fall at a great locally owned business, Impact Performance. She’s fun to watch in those groups and with their wonderful coaches. I hope she can realize how taking care of her body is helping her bent little body so much. And for this year, our plan is to continue to run as many races as we can, and her eyes are on trying out for our cross-country team for their next season.

Each week when we go out for runs, we usually end up somewhere, at least once, that she has to stay more with me, rather than set her own pace.  So many times running, she will do her normal what we call "circle back" to me...it's a saying we came up with when she would get far enough ahead of me, that I thought she needed to come back and run with me...usually on the highway or a trail...I'm not comfortable with her being too far out of sight.  She does it instinctively now...and I always think, “what a great heart that girl has!”.  She continues to work hard...and she knows I'm working hard, but even though I am a little (or a lot) slower than she is...she's willing to run back to me, then start again.  This happens many times on our runs, but a few months ago, it just hit my heart differently.

I think God works like this so often...He's ahead of us...all-knowing...all-powerful...we try and keep our eye on Him, but even when we lose sight of Him, and we fall a little behind or need His encouragement, He "circles back" to pick us up...to carry us further. 

I’ve had a good deal of bitterness in the wake of all of Effie’s troubles…not towards God at all, but towards medical mistakes that were made in the couple of years before we found out…I’m working on that in my heart, and trusting in God to see that through to complete peace for me, but that’s a different blog for a different day.

This week, I’m looking up and asking God to stay by our side. We go back on Friday for our routine, every six month, x-rays to evaluate Effie’s spine curvatures. She continues to wear her brace when she’s not active, up to the 22 hours per day, but it’s not a cure…it’s more of a “let’s try and slow this curve down” kind of tool. So far, she hasn’t increased that curvature, but every time we go for one of these appointments, I’m anxious. I know as she grows, her risks increase for that number to rise, so at some point, we’ll face that. Every time, I ask for it not to be “this time”. And again, I find myself asking God for more time, and more good news…news that this curve hasn’t changed, that what we are doing is working for now, and that all of Effie’s hard work in compliance in bracing is paying off for her…I’m asking for more time to run, more time to build confidence and love for something that has been a saving grace for us both, and more time for her to see that even after surgery one day, running will be worth fighting her way back to.

She is a warrior I will always want in my corner...and just like God, I pray she always "circles back" for me.

Nine miles+ in and she was still smiling!

“It always seems impossible until it’s done.” ”

— Nelson Mandela

"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?!