Saturday, October 3, 2015

Fibular Hemimelia -Decisions

In the next few months, Freddie, Ethan, and I will have to prayerfully make a decision regarding Ethan’s future surgeries. The weight of this decision feels physical, pressing on my heart and mind, bringing tears to my eyes even as I type.  His left femur is projected to be 2 ¼ inches shorter than his right at the end of growth (it’s over an inch shorter now), and we have two options:  1) to lengthen the femur internally -which involves a major surgery, therapy, and about six months of his life, but is a much easier procedure and less risky than the external lengthening he has already endured - or 2) to slow the growth in the right leg -which involves a minor surgery on his otherwise healthy leg, resulting in the loss of a bit over two inches of height.  

Such a strange decision to be placed in our hands:  how tall will your son be.  

God mercifully chooses our babies’ eye colors, the outline of their precious faces, the color and number of hairs on their heads. So I see this decision as a heavy one.  Ethan’s wise, we know that, and practical, and his voice will be heard. But can you imagine even making this choice for yourself? Would you endure another surgery? Would you permanently alter your stature?

I’ve preached to young girls many times -and daily to myself -that God created your body, formed it perfectly. Whether it be full hips or boyish figures, we’re fearfully made.  And Ethan is, too- masterfully knitted by the hands of God.  And God has walked this before us, I know, and will answer our prayers for peace.

And when I think of all of the decisions we make each day -and their implications - I know that this one, though weighty, is not life. And simply pales in comparison to the decision we saw those young students make this week - the decision to stand in the face of fear and boldly choose Christ.

Each day, though, whether we acknowledge the fact or not, we make the same choice -we either choose Christ or we don’t.  Second Peter tells us that the Christian walk should be a diligent one - a continual choosing of holiness over unrighteousness, a pressing on toward godliness, an adding of attributes: faith, virtue, knowledge of God.  Be sure of your calling, he warns -because those who are assured look and live differently than those who are not -not because of our innate goodness, but because of the God who indwells us -who compels us -toward Himself -who promises to finish the work that He’s started -who promises to keep us from falling and to present us faultless before His glory!

He alone is WORTHY of our PRAISE!

And He Alone will help us decide what’s best, I know.  

But He also calls us to pray together -to stand together -especially here in these last days (or so they seem to be) -to finish together. So, pray for us and our decision -as your examine your decisions each day.  Let’s compel each other, each day, to choose Jesus -and to be so BOLD in our choosing that a lost and dying world might yearn for the Christ in us! Let us live each day radically choosing Jesus, so that if our death comes in martyrdom, it will be a fitting end to a life lived daily proclaiming His name, choosing Him over hatefulness, over worldliness, over selfishness, over bitterness - over all sin.

Sunday, September 6, 2015

Fibular Hemimelia: a pictorial of eleven 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 -after I noticed his leg length discrepancy by three or four months of age -obvious in the picture above! (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 the valgus in his knee).

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, the fixator was removed -and replaced with a thigh-high cast.

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 another 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 simple 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 was successful, and Dr. Standard again performed a scar release, this time more extensively -so that the scars were reopened and stitched.  This was his roughest 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 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 experience 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 6th 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 on of his favorite teachers Mr. Trent! (2015)

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!

Friday, May 22, 2015

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.