Fibular Hemimelia: a pictorial of Sixteen years

I wanted to compile a chronicle of pictures of Ethan's journey thus far.  Sometimes it's helpful when thinking of the future to realize how far we have come!

I wish I had taken many more baby pictures of his feet and legs!  When Ethan was born, his nine toes surprised us, but doctors did not provide a diagnosis of fibular hemimelia until Ethan was 9 months old.  This was after I noticed his leg length discrepancy when he was three or four months of age -obvious in the pictures below! (2004)

By five-years-old, his discrepancy was about 5-6 centimeters, and we had made our way to Baltimore and Dr. Standard.  He experienced no problems or limitations -aside from an occasional knee pain or two (probably caused by his valgus (knock-knees).


 

Ethan's first surgery was performed four months before his 7th birthday; this involved the placement of an external fixator on the tibia/fibula and an 8-plate insertion.  The first six weeks were rough -as he lost the ability to bend his knee without excruciating pain.  After much therapy, however, he began to make great gains.  His leg was quite cooperative, and aside from a few pin site infections, things progressed rather smoothly.  We stayed in Baltimore for 10 weeks post-surgery in order to be near Dr. Standard and the physical therapy department. Ethan had land and pool therapy three times a week and x-rays every two weeks! We were able to watch his leg grow 6 centimeters as new bone developed (2011)

 

Six months later, Ethan had his second surgery - to remove the fixator and replace it with a thigh-high cast. (2011)



Though a bit cumbersome, wearing a cast for eight weeks was a sigh of relief in comparison to the ex-fix!

 



After a couple of months, the first cast was replaced with a removable one, and after almost 9 months, his leg was free!  Ethan began therapy to strengthen his leg and to learn to walk with a normal gait.  As the picture above shows, the valgus in his knee was still an issue after removal, and his scarring was quite prominent. (2012)

 A year after fixator surgery, Ethan had his third surgery to move the 8-plate in his femur to his tibia -to continue working on the valgus in his knee -and ultimately straighten his leg.  Dr. Standard also attempted to release his scars in order to correct the deeper scars that wanted to adhere to the bone (pins from the ex-fix had pushed the skin to the bone). Ultimately, some scars simply were corrected while others returned to the previous "sunken" state. Recovery was surprisingly quick with minimal pain. (2012)



The pictures above show the difference that 8-plates can make in the overall "straightness" of the legs!  However, fibular hemimelia legs are apt to slide back into a valgus position -and that's what Ethan's legs did -requiring another 8-plate transfer -this time from the tibia back to the femur.

This is a pic of the 8-plate that has been so necessary, and yet so troublesome!

Ethan's second 8-plate surgery (fourth surgery in total) was successful, and Dr. Standard again performed a scar release, this time more extensively -so that the scars were reopened and stitched.  This was a rough recovery -being in quite a bit of pain following the surgery. His pain subsided within a few hours, though, and he was excited to finally have crutches, having graduated from the walker! The recovery period involved soreness and about ten days of limited activity. (2014)

 

Less than a year later, Ethan's femur slipped back into a valgus position, so another 8-plate surgery (fifth surgery in total) was required.  Dr. Standard also decided to address his ankle! As the pic below illustrates, his ankle turns in, as it is also in a valgus position.  Therefore, an 8-plate of sorts was inserted in the ankle as well, projected to take a couple of years to correct.

 

 This was the first surgery in which Ethan experienced any anxiety.  He had to be given an IV prior to being moved to the O.R., and he had more questions than usual.  Being ten-years-old, he had a greater understanding of what he faced.  Despite his reservations, recovery was, again, rather quick -aided by the fact that we were snowed in for a few weeks during this one! (2015)

In October of 2015, Ethan had a sixth surgery to have both 8-plates removed -one from the femur and one from the tibia.  Recovery was rather smooth -and he enjoyed spending his P.E. time talking to one of his favorite teachers, Mr. Trent! (2015)

By March of 2017, Ethan's leg had, yet again, slipped into a valgus position, and this time, he was experiencing a lot of ankle pain.  Dr. Standard decided to perform an 8-plate insertion at both the femur and tibia, but to also address the ankle.  He cut part of Ethan's tibia that was impinging on his ankle in order to improve his flexion and hopefully help with the pain.  Because this procedure was more invasive, it required an overnight stay in the hospital.  Following the procedure, Ethan's leg was wrapped tightly, almost cast-like, and we returned to Baltimore in April to have the wrappings removed and replaced with a boot.  This seventh surgery proved to be quite painful for Ethan; the ankle procedure especially gave him a great deal of discomfort. (2017)

In April of 2018, both 8-plates were ready to be removed.  This was a simple, eighth surgery and recovery, and Dr. Standard declared Ethan holds the record for 8-plates! (2018).

In November of 2019, Ethan had his 9th surgery! This was a very difficult one, as Dr. Standard inserted a Precise Nail in the femur in order to lengthen Ethan’s leg 6 centimeters. This process involved the use of a magnet that, when placed on the leg, turned the rod inside and lengthened the bone. We stayed in Baltimore for 3 weeks this time in order for Ethan to receive physical therapy and to go to clinic appointments every two weeks. Once we returned home, we had to make the trip to Baltimore every two weeks for 3 months! Ethan continued physical therapy until May.  

Ethan’s 10th surgery was the result of an accident. Unfortunately in May of 2020, just a couple of weeks after finishing physical therapy, Ethan fell off a scooter and broke his hip! Because of the rod in his femur and the tightening/pressure on his hip from the lengthening procedure, the hip was more susceptible to breaking. Ethan describes this experience as his most painful to date. Dr. Standard inserted screws in Ethan’s hip, and he was in a hip brace for about 2 months. He returned to physical therapy once again to strengthen his hip and work on his gait. This all happened during a global pandemic! Only one parent was allowed in the hospital!

Ethan’s 11th surgery will be in June of 2021. This will be performed in order to remove the lengthening rod and the hip screws.

While you're here with me, can I just say that God has a plan for my son -that his diagnosis of fibular hemimelia -though labeled a "defect" by the world -is simply part of God's plan for his life.  Psalm 84:11 reassures us that God will not withhold any good thing from those who walk uprightly.  God has not chosen to withhold good things from Ethan; he promises, instead, to work all things -including this, to his good!

Grace Based Parenting because kids aren't standardized tests

Somewhere, somehow, I bought into the lies the world tells us about our children, but God is slowly doing a work in my heart to teach me the right way to see my three blessings.  What the world often uses as a measurement, God never uses.  I can’t find any biblical evidence of tests scores being an indication of right standing or a marker of one’s character.  Yet, I’ve found myself measuring my kids by their grades or, as sad as it sounds, their SOL scores–sometimes embarrassed when they haven’t measured up –and sometimes too overjoyed when they have.

Emily asked me once is if it was bad to have thin hair because they sell shampoo to make your hair thicker and should we get some for her? An obvious indicator of the amount of times she’s heard me say, “I can’t do anything with this thin hair of yours.” Kinda makes me a bit nauseous to think that by eight you’re already convinced that even your hair doesn’t pass the test.

Why is it that we allow the machine that is the media or the department of education or anyone to determine the value of our children –the worth of ourselves?

I remember a conversation in library school between mothers who were boasting about their children and the fact that their kindergartners had never “pulled a light,” and how they’d simply die if one came home with a disciplinary note –how parents today just needed to learn to parent their children.  I sat out of this one, given the fact that one of my children, not to name names, pretty much pulled a light a day for at least two years.  And I wondered if I should think less of my talkative one –who typically wasn’t disrespectful, just had a lot to say –and had God not intervened, I probably would have gone home and punished him for his preschool days just because I had lost out on bragging rights in the library.  If you’ve been around me much, I’m sure you know I don’t let much air fill a conversation –and I can certainly see where my kids have learned the art of conversation.  But isn’t that okay? Is being quiet the only thing worth celebrating in our children?  Or if you have a quiet one, one someone is always trying to pull out of her “shell” –one you’ve been made to see as odd or antisocial or somehow misfitted with the rest of the world—don’t you think there’s a place for her –a God ordained place where her quiet, reflective nature can be used.

Somehow we’ve erected this childhood idol –this straight A, rule following, college-bound, polite sports star that sometimes, if we are honest, we really want our kid to be.  We want the facebook picture of the most valuable player –but what is it that we are really being taught to value? Satan always lies, ALWAYS –and he always distorts truth, ALWAYS –and we have to be good discerners to catch this subtle lie that’s invading our ears.

The one who finishes her work on time, colors within the lines, says please and thank you –sure that girl has potential, but I was that girl –and I allowed perfectionism to almost claim me on many occasions because I internalized that A’s were good –therefore, the more A’s I produced, the better I was –and the more I was rewarded with praise (from well-intentioned people) and scholarships and awards which only fed my need to keep achieving to keep being “good.”

God doesn’t have an achievement system, though-- he has a grace based parenting approach –a “my grace is sufficient for your needs” approach –a “you don’t have to work to please me” approach –a “you’re created in my image” approach –that looks a lot different that the approach the world is embracing.  And I don’t want to be a part of the world.  I want to be SET APART instead.

Do you know what He’s teaching me to love most about Emily? How about the fact that whatever she eats inevitably finds its way all over her face –and usually in her hair –and on her clothes.  She wears one of those KoolAid grins –the kind that brings a smile to anyone’s face who sees her.  She’s the kid whose teacher says, “I bet there’s never a dull moment in your house.” –and I want to embrace this –to run with this –to enjoy this –this girl of mine who knows how to live in a way that I still haven’t figured out –who enjoys each second of each day to the fullest –who’s still talking when I’m walking out of her room at night –and wakes up with this hair that has never figured out how to be tamed.  Can I just love this about her –and stop worrying about spelling words and lady-like speech and just relax a bit and see what God’s going to do with this one?

And this middle one, this entertainer, the talkative light pulling one –who has endured so much more than me so far.  Can I just love the fact that he corrects everything I say because he knows every random fact in the universe including when all three of the three Stooges were born and when they died and how to make Origami versions of all the Star Wars characters.  Instead of pushing him to “reach his full potential,” can’t I just let him read all the corny joke books he can digest and useless information about Elvis or his fascination of the week? Can’t I just like his quick wit --that I’m sure got him in trouble the day he asked how M&Ms and cheeseballs could really help him and his classmates on standardized testing—and see how God uses all this?

And this last one, this first one, who seems so old, and so young, too –can I just like him –in his boots and jeans and t-shirt –and his pickup truck.  He was the one whose blonde hair I kept in a bowl cut –wasn’t that the sure fire method of creating a prepping boy –one who would like to read and like school –and be like me and fulfill all these meaningless arbitrary expectations that I created? I’m ready to watch him now, God’s helping me –to watch him be loyal to this group of friends that he loves and to work hard outside with his hands –doing a man’s job –and to see who He wants him to be –that will so exceed what I could have ever dreamed up in this head of mine.

Can I encourage you, as he’s encouraging me –to love your little one right where they are?  Can I remind you, as He’s reminding me, that slow workers sometimes do the best work –and that dawdling and doodling isn’t sinful.  That it takes all kinds –and that standardized isn’t a term that applies to relationships- to real love- to God’s design.

Stillness and Real Living

I read her article this morning (click the link, you won't be disappointed), and I haven't stopped crying, but it's one of those good cries, the cleansing kind -the kind that washes away facade and leads to better living.  I'm okay with that.  In fact, I've been crying, too, because He loves me enough to bring me to repentance --to change me, to make me new.

It's funny how God works -though articles, people, circumstances, His Word.  On Wednesday night, I had a "moment" -one of those, "What was I thinking kind" of moments after Emily, my seven-year-old won a "wacky-tacky Christmas" contest, and Ethan, my ten-year-old, huffed in the backseat because he had lost.  What really occurred was that Emily let me create her "costume" -a Christmas window I crafted from a piece of foam board, some old paint, a gift bag, and a hot-glue gun.  Don't let me downplay it too much --a friend told me it was "Pinterest" worthy!  Anyway, Ethan wanted to create his own design, but had "crafters' block," and I strategically made him into a "Christmas bag" complete with tissue paper and bows -at the last minute (hang in there -the point will come, and it's a major one!). In the van listening to his disappointment and vow that "he never wins anything,"  I prayed, "Lord, help him learn to lose with grace." But what the Lord whispered back took me my surprise. He said, in the stillness of my thoughts, "They don't need grace to lose, but to live."

Grace.  It's my life song -the lesson He keeps teaching me over and over, and I keep forgetting.  It's the lesson that perfectionism keeps stealing from me -and today, He told me, "Pinterest worthy mom," the need to impress, to over-do, to out-do --took joy right from the fingertips of those babies. And He was so right.

I'm "that mom" -the one whose kids match on Christmas and Easter -who repainted a bit on childhood hand prints -to make the priceless pictures "just right." I'm the one who cleans for 8 hours before inviting anyone over and declares that the house is such a "mess." I'm the one who almost died, literally, when her daughter drank Kool-aid on the day of family pictures and developed an orange-ish mustache in the process.  I dot concealer on scratches before school pictures and practice smiling with Ethan so that his eyes don't have too much squint. Yep, that's me -or it was.

The article I mentioned at the top -click here-was a confirmation of this lesson that He's so willing to teach me.  It simply talks of family pictures -of little girls in stiff dresses and exasperated parents trying to coax little ones into sitting still in order to capture the quintessential family moment -and how such moments, such images, aren't real and fail to capture the beauty of family.  The photographer, instead, prefers moments of living -moments of laughter and messes and Kool-Aid smiles and squinty grins. I looked up from the the article to see the row of picture collages on my hallway wall, and what struck me most was the stillness -the poses and the perfection of curls and matching sweaters and children lined up in a neat row.  I kinda sank a little against the wall to take in the realization of what I had been missing.  I thought I knew that life isn't about stillness --about getting my ducks all lined up in a row, but the pictures say that I have a lot to learn -a lot of grace bottled up that needs pouring out.  I wanted to take them all down, almost ashamed of what they represent -of this part of me that needs something -even a picture - to turn out "just right."

I want to let my kids live --real lives, not scripted one.  Lives where they make a bad grade on spelling every now and then because we were playing Monopoly and forgot about lists of words. Where Kool-Aid mouths are kissed and little boys make their own wacky-tacky costumes and order Elvis backpacks if that's what they want.  Lives whose seeming perfectionism aren't stumbling blocks for others.

When did we fall, I fall, for such lies? --that what's best is what's still?  I have read, many times, poems about holding our children's hands, of how time passes too quickly.  And truthfully, I know this --I do take time to see my kids -to watch Emily's one thousandth hand stand onto the couch and to listen to Ethan's random facts about the Three Stooges and to sit next to Josh and gleam what I can from his day.

But somehow the truth -the beauty of these moments -seems drowned in a world pushing us to be something that we're not --to achieve things that we can't.  Doesn't the unlined face and the unchanged body -doesn't it indicate a lack of life --and yet that's what the world demands, celebrates even.  What is Satan doing here -telling us to hold to things that aren't true --to seek happiness in seeming perfection -- in a facade that doesn't really exist -when it's actually found in the mundane, the everyday, the stretch-marked bellies that held babies and sticky counters where memories were made?  Why is knowing the truth so easy, yet putting it into practice so hard?

One of the redeeming photos on my wall is this black and white photograph of my dad and Josh -who was probably four at the time.  They were dancing --smiling -not at the camera, but at life.  That's my resolve this year -to smile at life -at the imperfection of it all -the changes that come -and to pour out this bottled up grace.  Grace for mistakes and losses and wins and Kool-Aid mouths.  Oh, how I need His grace today -so undeserved -but isn't that what makes it grace?

Let's help one another today -to "get it" this time -to err on the side of grace -and not let Satan take any more of our JOY!

Hebrews 3:13 -But exhort one another daily, while it is called To day!

Fibular Hemimelia -Scars and Grace

This little left leg, in a few weeks, will boast a new scar, somewhere next to an old one, maybe even through the old one, breaking scar tissue.  This little tibia, once a bit bowed and slanted too much toward the inside of the knee is now corrected, standing straight and tall, ready for a guiding 8-plate to be removed.  This femur, still a bit sluggish to cooperate, is getting an 8-plate of its own.  

This little one isn't worried, not anxious, not him.  He's looking forward to a nice pair of crutches.  When you're six or seven, you leave surgery with a walker, but when you're nine, it's crutches, baby, and you suddenly become the third grade star --at least for a day or two!

This blogger, she's written a lot about perspective because God's granted her a bit of wisdom; given all the scars, she had to ask --and He's a gracious giver.  She often wonders why He keeps giving, freely, abundantly to her --who fails and complains and wanders (and wonders).   And He reminds her, quietly, gently that the gift isn't about her, isn't tied to her worth, her work, but to His.

The way an 8-plate works is by turning the leg in the right direction as it grows.  (This blogger, she's crying, because all she wants is a Word from Him, and when He gives one, a clear one, she's overwhelmed by Him ... she's simply undone).  We who believe, not just sign a card or raise a hand or call ourselves by His name, but we who Confess and Repent and Believe and Live, we have this guiding force within.  His guiding force.  His Spirit.  Him.  Ethan's plate was implanted, surgically, and can only be removed by cutting through skin and through bone.  Our Spirit within, past skin, past bone --even the surgeon can't touch.  Nothing can remove this God from His Children, nothing can separate us from His love.  Who can undo the Seal of the Sealer? Not death, nor life, nor angels, nor principalities, nor powers, nor things present, nor things to come, Nor height, nor depth, nor any other creature (Romans 8:38-39).  Paul was convinced, and this blogger, she is too.  For without this promise, this grace, this unmerited favor, this love, this Saviour, she's lost.   Remember the failing and complaining and wandering and wondering.  Without His Spirit, she'd never find her way back.  But He promised, Paul gives us another Word, he was convinced and confident of ONE thing, and this blogger, she is too:  Being confident of this very thing, that he which hath begun a good work in you will perform it until the day of Jesus Christ (1:6).  He is going to perform this work IN me because I can't perform it myself.  He began it, He performs it. He comes back for me.  It's all about Him.  What does that look like, Him performing in me? Like a puppet pulling strings? Like me without a voice, without a choice?  Maybe like a knee turning, straightening, a guide in the background.  Sometimes it's a painful turning, but a purposeful one:  For whom the Lord loveth he chasteneth, and scourgeth every son whom he receiveth (Hebrews 12:6).  Paul was struck down in his sin by his God who started the work in him: ...[I]t pleased God, who separated me from my mother's womb, and called me by his grace, To  reveal his Son in me, that I might preach him among the heathen,   This God who has set us apart tells us: Abide in me, and I in you (John 15:4).  

Strong's defines abide:  

to remain, abide

1. in reference to place
   1. to sojourn, tarry
   2. not to depart
      1. to continue to be present
      2. to be held, kept, continually

What's key to our abiding when we fail, complain, wonder, and wander?  Simply tarry there where we are "held, kept CONTINUALLY."  When we are a part of the vine, we don't have to worry about tarrying, even, for His Spirit draws us, comforts us, brings His Word to our remembrance.  He won't let us leave Him.  When we feel unworthy, when our hearts are weary, we are reminded:  For if our heart condemn us, God is greater than our heart, and knoweth all things (1 John 3:20).  

We can REST in Him, work for Him because His very Spirit compels us to do so.  For, in the end, we  will not say that it was our working, our praying, our witnessing, our studying that kept up secure in Him. Instead, we'll cry, "Jesus, He held us."

He receives All Glory All Praise!

Until that day, His Spirit keeps molding, turning, straightening, conforming us into His Image!  Oh Glorious Day!

  

Fibular Hemimelia -Celebrating Life Wonderfully Made

Psalm 139:14

King James Version (KJV)

¹⁴ I will praise thee; for I am fearfully and wonderfully made: marvellous are thy works; and that my soul knoweth right well.

It's interesting how we define perfection.  What we tell ourselves we should be.  What we try to impose on our children.  Ten fingers and nine toes equals less than expected.  Less than expected leads to doubts.  "What did I do wrong?" quickly becomes "Why did He do wrong?"  

Yet, the Truth of His Word declares that the Works of His Hands are "Wondrous" and "Worthy" of "Praise." 

What happens when we stop Asking Why and start Embracing Why?

On the way to church Wednesday, he feel asleep in the car, tired out from a weekend of 104 fevers, his face still pale and drained.  I stared at this little face, the perfection of smooth, eight-year-old skin, and wondered about the Why.

Today, on his ninth birthday, I still wonder.  About the nine toes and the recurrent fevers, the surgery scarred leg with surgeries yet to come.

This morning, sitting on the back pew with his three best buddies fresh from a sleepover, he answered the alter call, walking up the aisle with a still less than expected gait.  On his return, he whispered to the friend on his right, "Have you been saved?"

I smiled a bit.  He answers even our wonders. He know that we are dust.  He lavishes grace and fills a mother's heart, scarred from wondering and watching, with peace.

What will this nine-year-old become that this is necessary?  Will he minister to those society rejects?  Will his hand one day reach out to the fever stricken child or the amputee?  Will he testify of God's Provision, of His Goodness, of His Mercy and Grace?

This afternoon, he visits his great aunt Lynn, pained with cancer, unable to eat or to speak.  I watch her sleep and remember the letters and sweet cards, sent to Baltimore to him and to his sister, both eager to hear from home.  She was faithful to write to them each week and they have been faithful to pray for her each night.  Today her mother, his great-grandmother, sits at her bedside, grieved beyond words.  And I wonder why.  Why should a mother outlive her child?  Why so many burdens, so many burdened?  

I think of the little one from our little community waiting to be well enough for a new heart.  And I think of his parents, waiting in a hospital room so far from their home, at times, I'm sure, wondering why.  And the nine toes and shorter limb seem so pale in comparison.

And I recall the command:

Philippians 4:4

King James Version (KJV)

⁴ Rejoice in the Lord always: and again I say, Rejoice.

And I think it's too hard.  This is too much to ask.  To rejoice always and again rejoice.  And I reread because I think it's too hard, and in the rereading, I see the Lord.  He is in the middle of the Rejoicing.  Do you see Him?  Can you see Him in the middle of the verse, in the middle of the circumstance, in the midst of your life?  Are you looking closely enough or are you stuck in the difficulty?  He isn't asking you to rejoice in the difficulty, He is asking you to rejoice in Him.

We can find Him, He reassures, IF we seek for Him with all of our hearts (Jeremiah 29:13)?  If He knows us, that we are prone to wandering, then the Why's may be the only way to bring us to the SEEKING, and the SEEKING is the only way to bring us to HIM.  

He humbles me, then, giving me Why's, leading me to Himself, leading me to lead you to Himself.

Will you Praise Him with me today, for fearfully, wonderfully orchestrating ALL things to bring You to Him?  Will you Praise Him today who has prepared places for us --here and for all eternity!