Spirit Walk

 If we live in the Spirit, let us also walk in the Spirit.-Gal. 5:25

I've been asked to speak at a women's retreat at my church, and at first I sought God as to what He would have me teach.  What He has pressed upon me, however, is not the what but the who --who I should be as a teacher, as His child, as His earthly example.

Sometimes, I get caught ... caught in the world's idea of "ideal."  I'm striving hard to lose those last 10 pounds and striving hard to pay off debt so that I can go back into debt to renovate my house.  Vanity.  Isn't it?  What is it that I hope to achieve with these goals?  Who is it that I'll be when they're achieved?  I'll be more accepted by a world that rejects my Savior ... and that really hurts to type.

A couple of weeks ago, during Spring Break at my school, I walked early in the morning at a local park (you know to achieve the 10 pound goal), and as I walked, I began to pray.  With a husband, three kids, and a full time job teaching, plus the all time consuming, albeit entertaining, Little League, life is so busy.  Not busy with sinful things, but busy with things that distract from the one GOOD thing (need I remind you of Mary and Martha?).  Prayer sometimes ends up at the bottom of a pile of good intentions --first thing in the morning --or after the kids are in the bed --having fallen through the cracks of tiredness and selfishness.  This morning, however, it was just me and my Savior --and the few men on the clean-up crew working on the debris from a day or two of heavy rain.  As I walked, pouring out my brokenness and confusion, my failings and my fears, I began to cry, sob actually.  Sobbing soon lead to praising, as the result of true repentance always does.  I can only imagine the thoughts of the clean-up crew, probably thinking I was so out of shape that I was wiping sweat from my face and raising my arms to increase my oxygen level. Not the most flattering image I admit. 

God is so good.  As I continued to walk, I started laughing at the realization of something quite profound:  this Spirit Walk --this broken, sobbing, hand lifted mess --was all that I had to be to meet His approval.  At that moment I had achieved something:  I was "ideal."  Now don't get me wrong, I wasn't perfect, I was just YIELDED.  And I want to be every day.

Why do we have yield signs?  So that we don't plow into oncoming traffic, believing that we have the right of way.  When we yield to the Holy Spirit, we avoid as much destruction in our lives as we do when we yield to the tractor trailer barreling down the interstate.  I want to learn to give Him the right of way, to slow down to that still, soft voice --to really hear Him and to really obey.

I want my definition of ideal beauty to match His:
1.  I want to put Him first.  I want Him to have the first fruits of my time and my energy, my worship and my obedience.
2.  I want to honor my husband.  I want to honor him with my words and my actions, with the way that I dress and speak, with the way that I prioritize my time. 
3.  I want to efface myself --to get out of the way so that others see Jesus before they see me.  This means that I cannot wear things that draw attention to myself, to my body in a way that isn't glorifying to my God.  It doesn't mean that I can't be feminine or attractive, but it does mean that I have to be subtle and modest.  I do not want to be a stumbling block to another woman's husband --and ladies please don't be a stumbling block to mine!  I want my words to be glorying and not full or gossip or slander or anything that isn't for the edification of another (Eph 4:29).
4.  I want to mother my children.  I want to shower them with love and affection and REAL attention and TIME.  I want to teach them every day, in every way, about their Heavenly Father, about unconditional love, and about respect and obedience, and laughter and beauty.
5.  Oh the list could go on and on ... I want to please Him ... to hear Him say, "Well done."  I want to be a useful vessel, a clay pot worthy of the sacrifice with which I have been bought. And when I fail, I want to HANG on to GRACE, to weep at the unjustness of the One who died for such a one as I.

Will you Spirit Walk with me?  

Will you pray that each day, I fight sleepiness and selfishness and worldliness 

and 

simply

 YIELD?

One Thousand Gifts -Fibular Hemimelia

I've been awed and inspired by this woman's words and her book, One Thousand Gifts.  I encourage you to read it and marvel at the ability God is giving her to see grace in ALL things.  Godly disciplines are learned, not merely stumbled upon, and I am submitting myself as an eager, though struggling, student.

Grace is freely given, and we stand ready to be lavished when grace comes in the form of  free flowing blood from a cross we could never bear, or a well spring of forgiveness to blot out our shame. Yet grace often remains an unwanted gift.  Instead of opening our hands to receive God's graciousness, we stubbornly hide knotted fingers behind our backs, wanting grace in a different package than the one offered, arguing that the gift is, in fact, not grace at all.

What does grace look like exactly?  Is it packaged neatly in brightly colored paper, trimmed with ribbon poised and curled?  Sometimes.  Often, though, its wrapped in sorrow, bound tightly with difficulty.  Lonely in its appearance.  Uninviting and Austere. 

If you then, being evil, know how to give good gifts to your children, how much more shall your Father which is in heaven give good things to them that ask him? -Matthew 7:11

Can you uncurl knotted fingers long enough to accept His gifts?  Can you look past your circumstance and see your way through to Him?  Ask Him to hold your hand?

If a son shall ask bread of any of you that is a father, will he give him a stone? Or if he ask a fish, will he for a fish give him a serpent? Or if he shall ask an egg, will he offer him a scorpion? If ye then, being evil, know how to give good gifts unto your children: how much more shall your heavenly Father give the Holy Spirit to them that ask him? -Luke 11:11-13

Last night I dreamed of Ethan running, abandoned and free --the way children run when they forget parents are watching.  His face upturned to the sky, his legs free of scars and pain.  It was one of those dreams that you don't remember when you awaken.  Instead, it washes over you unexpected, details falling into remembrance.  It met me early this morning, harsh and unfair.  Where's Grace to be found in crooked limb, in painful step, in watching sister dance and brother run?  In dreams yet unrealized?

 Thou tellest my wanderings: put thou my tears into thy bottle: are they not in thy book? -Psalm 56:8

Tears have a way, a Grace-like way, of bringing me running to my Father.  "Help him; heal him, " I managed to say.  "Make your Grace sufficient for him --for me."

 At school today, I recount the dream.  "Ah, you dreamed of hope," Joy Mac says.


And there it was:  GRACE.

Isn't it all Grace?  The pain that sends us to our knees.  The promises of healing.  The slow fading of scars.


By him therefore let us offer the sacrifice of praise to God continually, that is, the fruit of our lips giving thanks to his name. -Hebrews 13:15

(Titling the blog, I, at first, purposefully omitted the words "Fibular Hemimelia" that have donned every page.  "That's not what this one's about," I thought.  That still, small voice, however, told me instead:  "That's exactly what this is about, Sindy." Grace.)

Fibular Hemimelia: Cast On/Cast Off

 For those of you following the leg lengthening journey take heart!  Casting is quite easy --especially in comparison to the fixator!  Ethan spent 27 weeks with the external fixator --13 of which were spent turning and 14 of which were spent allowing the bone to consolidate. 

The morning of fixator removal, we saw Dr. Standard only briefly and Ethan was swept off to the OR  I got to accompany him, once again, into the OR until he was under anesthesia.  The procedure took less than 2 hours --and we were soon able to visit him in the recovery room.  He was a bit groggy and complained that his leg "hurt," but the pain must have subsided quickly because after we left the hospital, he didn't need even a single dose of pain medication.  He was released from the recovery room --with instructions to keep the cast dry and no physical therapy until after we returned in a month.  By the time we made in over to the Hackerman Patz house, via his wheelchair, he was ready to attempt walking.  In fact, with his walker, he was perfectly fine walking the evening of the surgery and had very little complaints.  He was a bit shaky and unbalanced --and the walker became a necessity again for a couple of weeks.

 

Ethan kept grabbing the oxygen mask, acting like he was hyperventilating.  They let him bring it home~

 

 

 

 

His first few steps were shaky, but exciting!

 Ethan's cast came up to the top of his thigh --and was quite an orange looking monster.  It make bathing hard --we opted mainly for sponge baths as opposed to trying garbage bags in the shower --and walking a bit cumbersome and awkward, but overall, he did great!  I was most afraid of the pin sites underneath the cast causing some sort of nasty infection, but that did not happen.  What did happen, though, was that the first night following surgery, he bled through the bottom of the cast --at his heel --just a few dark blotches showed on the cast and a few drops on the bedsheets.  Dr. Standard assured us that this was normal, and this didn't happen at any other instance.

Everyone seemed excited to sign Ethan's cast --and among the signatures were a few Ravens' cheerleaders!  Yep, that's right, cheerleaders.  We met these "cheerful" purple and black clad gals on Saturday night following his surgery at a local eatery.  Although we thought such signatures were at least pretty "cool,"  Ethan was none too impressed and opted not to have a picture taken with cheerleaders!  He was quite happy, though, to oblige the Mascot!  I was quite happy myself until the cheerleaders began handing out autographed bikini shots --which I soon confiscated much to the chagrin of my thirteen- year- old who thought they'd look awesome in his locker!

Our cast experience couldn't have been better timing --thank you Lord (even though I was sure anxious to get that fixator off when I thought was best)!  Ethan had two weeks of Christmas vacation before he had to return to school and attempt the classroom and hallways.  It took a week or so for him to learn to balance and ambulate without the walker.  We were super happy that "real" clothes fit again --at least wind suits and carpenter jeans!   And we were blessed with snow which cut out about 3 days of school.  All in all, he was only in the cast for 6 school days before we made the trip back to Baltimore.

If you look closely at the cast removal shots, you can see pure terror in Ethan's eyes.  You can't hold a miniature saw blade in hand and tell a seven- year- old, "It won't hurt a bit."  Freddie and I were super anxious to see what that leg would look like --and it was actually much less gruesome than we expected.  Now, it certainly looks war torn or at least battle scarred (much befitting a soldier of Christ), but much better than clad in a metal fixator or heavy cast!  The nurse simply cut the cast down the front in two places, put in new lining, and attached velcro straps.  Voila --removable cast!

First peek at what was underneath!

 

Dr. Standards's instructions were to resume therapy and continue 2-3 days a week for the next six weeks until we return yet again for another follow up.  Ethan was more than happy to get into the shower that first night --free from fixators and casts --but I will admit that rubbing my hands over what is essentially small holes or divots in the skin turned my stomach a bit!  The old pin sites have to be rubbed out --basically when the pins are inserted into the bones, they take skin with them, and this skin can permanently adhere to the bone.  So, we're busy rubbing lotion --to help with the itching that came as soon as the cast was lifted off his leg --and to help break up the scar tissue.  We've been home only six days and things are progressing.  He is understandably reluctant to walk on his leg, but is being brave and taking steps throughout the house.  He has restarted therapy at school and at home --most of which consists of exercises to regain range of motion in his leg and ankle and to simply build back lost muscle.  His favorite thing so far ... a nice, hot tub bath ... with no parents lingering near to help wash!  I didn't think we'd coax him out the first night (after all, it had been 7 months).  The last procedure (we think) will happen this summer when the 8-plate is removed from the knee.  Hopefully, it will do its job and straighten out his leg --as far as his knock kneed problem goes.

You can see that the left tibia is now straight, but the leg is veering in the wrong direction from the knee!

I'm sure there's lots more lessons to learn and trials to come, but we're enjoying what we hope is the last few weeks of this one.  Ethan's perseverance and general attitude remains a blessing to me.  I'm looking forward to the simple things now ...  seeing him curl up on the couch, holding him tightly in my lap, watching him run...  

Fibular Hemimelia - Portrait of a "Real" Man

One day it occurred to me that in all the blogs, he hasn't had much space.

 

 He will probably more than likely kill me for the above picture, but I think it's pretty great.

Chip Ingram has a lecture series called "House or Home" in which he paints a picture of what a "real" man looks like as opposed to the not so flattering ... not so responsible ... not so godly images of men plastered in the media. I suppose it's hard to be a man ... especially in 2012.  Today, a man is defined less by his morality and more by his check book ... not to mention his appearance, his golf swing, or his female conquests.  What's a man to do?  Well, my man (I know you're grinning by now) uses the Bible as his mirror and not the world --and the result is a pretty good lookin' guy!

When he married me in 2003 after quite a fabulous, albeit whirlwind courtship, I'm not so sure he knew what he was in for!  Now don't get me wrong, he was a gentleman to be sure.  On our second date, which happened to be my birthday, he asked, "The sky's the limit; where shall we go?"  Seeing as it was my 29th birthday and I had already begun the list of things to do before old age set in (you know, 30!), I picked something from my list!  I responded, "I want to see the Mississippi River --and my only catch:  you've gotta have me home in time for Sunday School!"  After an eight hour drive to Nashville, I could just make out the River through the darkness.  What could I see for sure?  This guy in his faded baseball cap and shined up pick up truck was sweeping me right off my feet!  Four months later ... we ran away, Vegas style, and just got hitched!  (Oh, and by the way, he got me home in time for church.)

(Can you see that big grin --and the fact that he's peeking during the prayer --now that's a real man!)

Fresh from the plane and the Excalibur Wedding Chapel, life got complicated.  The Mississippi man became step-dad --and this little guy:

 

who was busy taking care of his Momma:  

came with a list of challenges from the start.

Most people, I don't image, expect the kind of  challenges we faced that first year of married life!  God knows what we can handle with Him --and what we need to experience in order to grow in His likeness --and that year certainly provided much opportunity to grow!  Six weeks after the wedding, Josh was diagnosed with a brain mass; five months after the wedding, I found out we were expecting Ethan; and eight months after the wedding, Freddie was diagnosed with the exact same brain mass as Josh.  Yep, two brain surgeries and a baby (who we would soon find out came along with quite a few challenges of his own, too)!

Now, do I think it's pretty crazy that Freddie and Josh would, within six months, both be diagnosed with a cavernous angioma?  Yes, that's an understatement and what the doctors called pretty astronomical odds.  It certainly put life into perspective and my love and need of them both was (and is) overwhelming.  More than anything, however, this time in my life was the beginning of my dependency on the Lord --and my realization that His plans, despite my finite understanding of them, are always best!

When real men get married, they do it for life; they allow those vows to resonate.  Because sometimes it's not health, it's brain tumors or fibular hemimelia; and more often than not, it's poorer rather than richer --at least in terms of finances. We have made what God calls a covenant --an unbreakable promise --like the one Christ made to return for His church --and it simply can't be broken.  I can read some of your thoughts --that's quite a risky thing to say in print --on the Internet --that's kinda like writing with a Sharpie.  Well, our marriage is written in permanent ink because that man of mine --he's first of all, a child of His --the one who established marriage, who knew it wasn't good for us to be alone.  And every day when He loves us and He forgives us, He reminds us of the definition of UNCONDITIONAL love --and He gives us the strength and courage and perseverance to love each other despite ourselves --because it's not about ourselves --it's about HIM!

It doesn't take real men long to fall in love, not only with their wives, but with their children, too.  Suddenly, improving his golf swing became replaced with improving his T-ball swing instead.

Oh, and when that little girl came along ... all that was left of his heart was simply surrendered!  Admittedly, he has the ability to take her from this little princess:

 To this tough little football fan (How 'bout them Cowboys!):

A real man has muscle --and my man has used his mightily this year.  Not only has he carried a little boy in a fixator and now in a cast, but he has certainly carried me.  He has carried me through doubt and fear and sadness and joy and never once complained of an aching back. Over the last 8 years, I have watched him carry the weight of a youth ministry at church --and at home. I've listened to him read the Bible to our children and other people's children too many times to count and heard countless prayers in a youth filled church classroom and in our children's small bedrooms, too.   That's right --real men pray; real men study; real men repent; real men recognize their need for help from the only One who can fill them with strength so that they, in turn, can strengthen their wives and children, too!

If you haven't figured it out yet, I love this man.  I prayed for him specifically --for a man who would first love God and then love me and Josh (we were a package deal)!   He has been with me from this:

  

to this:

to this today:

(I need to remind him of the grin from the wedding picture!)

 If you are blessed enough to have a real man, thank God for him, encourage your sons to be like him, stop nagging him and start supporting him through submission, pray for him --for he will stand before God one day to give an account of the way he's directed your family.  Chip Ingram said that when he was a child, his heroes were firemen and policemen and doctors --men who did heroic deeds and saved lives.  Today, our boys idolize rock stars and basketball players --men who've figured out how to get paid for playing well.  My boys, however, have a hero in the house --and it's not on the television.  He's God's Warrior, a husband, a father, a son, a son-in-law, a brother, an uncle, a teacher, a friend, a REAL MAN! (now be careful ladies, he's mine!)

Fibular Hemimelia: It's all about Perspective

PERSPECTIVE -
 n.

1.

a. A view or vista.

b. A mental view or outlook: "It is useful occasionally to look at the past to gain a perspective on the present" (Fabian Linden).

2. The appearance of objects in depth as perceived by normal binocular vision.

3.

a. The relationship of aspects of a subject to each other and to a whole: a perspective of history; a need to view the problem in the proper perspective.

b. Subjective evaluation of relative significance; a point of view: the perspective of the displaced homemaker.

c. The ability to perceive things in their actual interrelations or comparative importance: tried to keep my perspective throughout the crisis.

4. The technique of representing three-dimensional objects and depth relationships on a two-dimensional surface

Let's stick with 1 b.  today, shall we?

The nice thing about a blog is that it is also a chronicle.  That is, today I reread entries from before the lengthening surgery and am amazed at how quickly time has passed and how the events of this year have helped shaped my perspective on life.

Expecting parents typically respond to the question, "Do you want a boy or a girl?" with this answer:  "I don't care, as long as it's healthy."  Well, what if the baby you deliver is a perfectly beautiful baby boy with ten fingers and nine toes?  You change your perspective.  You realize that the answer to the question probably should be that you want God's will ... along with His strength to handle His will!  Of course we all want healthy children, that's not what I'm saying at all, but more than that, I want to learn what He has to teach me through my children, and I want them to learn what He has to teach them through the circumstances that he allows.

Yesterday, Emily knocked a pretty hefty glass bowl off of a china cabinet and onto her leg, slicing her skin just at the knee.  Needless to say, she was hysterical.  The more hysterical child, however, was the little boy in the thigh high orange cast, lying face down on the coach, screaming in tears at the sight of his sister hurt.  Now, from my perspective, I didn't know what to cry about more... Emily's bleeding leg or Ethan's bleeding heart!  This little boy couldn't have handled watching his sister endure what he has endured for the last six months, and I'm sure the Lord took that into consideration when He perfectly formed these babies in my womb.

My perspective in August, when school started and therapy was quite painful for Ethan and watching his friends play on the playground without him was even more painful for both of us, was one of wishing we had never started this process!  Those feelings come, I guess, when we "lose" perspective.  What does that mean exactly?  I suppose it means that we focus on the "now" -- today, and lose sight of the bigger picture.  That's what happens when we buy Christmas presents that we cannot afford and our children really never asked for, when we fuss at our husbands about their balled up socks on the floor, when we cry that we're never going to lose those last 10 pounds.  We forget that Christmas is about Christ, marriage is about sacrifice, and our bodies are holy temples, intricately and perfectly designed.

This past year, the Lord has helped me maintain a long range perspective ... He has kept me wondering what plans He has for Ethan.  How these months of perseverance will serve him later on ... how these months of perseverance will serve me ... and Freddie, and Josh, and Emily as well.  I don't know that answer, but one day I will.  Someone once described our lives as a tapestry .... what we see is the back of the artwork, tangles of string and color.  What He sees is the flip-side -- a beautiful, complete picture.  One day we will see that, too.  Sometimes, he allows us to see glimpses of  His glory, His working out pieces in the design, His delicate weaving of threads.  How beautifully He crafts our lives!  What we need is perspective ... and patience ... as He works.

The picture below is my favorite of all the "fixator/surgery" pictures.  And, it wasn't taken by me.  It was taken by Ethan ... and showcases what he has seen for the last several months ... life from his perspective.  When I found this in the pictures file on my phone, I was speechless for a few moments because no matter how much we love someone, we cannot truly know what they are experiencing.

The next picture leaves me speechless as well ... simply because He does know exactly what we all experience.  This difficult glimpse at those few moments that changed history ... including me ... puts all things into perspective.  When I surrendered at the cross, I also surrendered my rights to doubt His love for me ... to doubt His timing ... to doubt His mercy ... to doubt His plan.  Oh Lord Jesus, keep molding me to be more like you, use my circumstance, my children ... to complete this work You have begun in me.

Fibular Hemimelia -Miracles and Thanksgiving

With it being November and all and reading all the Facebook thankful lists, I thought I'd try my hand at a thankful blog.  The problem is that once I started naming my blessings one by one, I have a tendency to get carried away; therefore, I'm limiting my list.  Be patient ... this should be a good post!


 After Josh was born by C-section, six weeks earlier than expected ... and breech, I quickly added his middle name ... Caleb ... in honor of the two biblical brothers who made it through the wilderness to see the Promised Land.  I knew there was "fight" in that 4 lb, 12 oz cotton haired boy ... and I was right.  Eight years ago, when I drove him to the E.R. to find out why his head would not quit hurting, expecting to hear that he had a virus or another ear infection (he had tubes in his ears 5 times!), nothing could have prepared me for the words uttered by the physician on call.  "Good thing we did a CT scan, " she said, a bit too triumphantly. "He has a mass on his brain."  My mom says she'll never forget that phone call. The one I made from the parking lot screaming in tears, repeating the words I had just heard.  ... After meeting with a neurosurgeon that night at midnight and quickly scheduling brain surgery, I was left in shock and fear.  "Where was my God," I questioned.  "Why did he pick my child?"  He showed up soon enough ... even before the operation began.  The morning of surgery, the anesthesiologists at the hospital refused to aid in the surgery.  Apparently, brain surgery on a child had never been performed at that hospital ... or at least not in the last 10 years.  Their refusal lead us on to a different, much more equipped hospital, where Josh had surgery and emerged unscathed without any residual effects. Oh, how my heart sings in praise of my God.  Why did He intervene?  Why did He extend such mercy and grace?  What must He have in store for my now 13 year old blonde headed boy? Oh how I thank Him.

After giving birth to two boys, how thankful I was for a pink nursery, a pink receiving blanket, a little pink pacifier, and a 6 lb, 15 oz  baby girl!  Emily's birth story is no less miraculous than Josh's.  Like her much older brother, Emily was breech; therefore, a C-section was scheduled.  Unfortunately, I went into labor before the scheduled date.  After checking into the hospital, I waited in a room for a delivery OR to open.  I waited too long.  By the time the OR was ready and a nurse finally returned to check on me, my labor had progressed rapidly.  In fact, I was at a 10 (meaning ready to deliver), screaming in pain, thinking I would vomit because of the intensity of the contractions.  Without as much as a Tylenol (the nurses insisted I wait until I got to the OR for an epidural), I lie in that hospital bed as my uterus tore down both sides. After the C-section was finally performed, my mom watched as blood was suctioned from Emily's mouth.  Had she been in utero much longer, she could have died, for as my uterus was filling with blood, so was her tiny body.  After much suturing and two blood transfusions, my uterus was salvaged, but my mind was left in need of a great deal of healing.  I'm not sure where the greater miracle occurred ... my life being saved from such a great loss of blood, Emily's first breath from clear lungs, or God pulling me from the darkness that consumed my heart for months following the delivery.  Oh, how my heart sings in praise of my God.  Why did He intervene?  Why did He extend such mercy and grace?  Oh how I am thankful to the One who gave me my beautiful girl to mother here on earth ... and gave me back my life after losing it in the dismal regions of my mind.  What must He have in store for my now 5 year old blonde haired girl ... and her mother?

 What can I say about Ethan's story that hasn't already been said?  I hope my thankfulness for God's provision exudes from the pages of the blog, but there is an untold story ... so read on.  Many days in Baltimore, I felt hopeless only to come home from therapy and check the little Blue's Clues Mailbox waiting by the stairs.  More often than not, a card would be waiting.  I tear up now at the thought.  A verse would be inside the card ... perhaps something about perseverance or God's watchful hand ... and I would smile again.  Sometimes, a coloring book or stickers greeted Ethan and Emily and made a difficult day a brighter one.  Their favorite gift?  Five dollar McDonald's cards they could swipe at the register all by themselves.  Some days, Joy Mac or my bff would post a comment to the blog and I would feel heard and loved.  Ethan's greatest well wisher at the church we attended was an elderly lady who eased up the aisle with the aide of a walker much like Ethan's.  Each Sunday she never failed to ask Ethan to race her 70 year old self to the door on our way out.  In good fun, she presented him with a horn for his walker ... to match the one on hers!  Before he graduated to the walker, the quilting ladies from the church gave him a beautiful, patriotic themed quilt for use in his wheelchair.  And those same ladies were the first to Praise God the first morning he walked in on his own two feet!  May God teach us all the power of a simple word or gift of kindness!  When we returned from Baltimore the cards stopped, the blog posts slowed, and life returned to a sense of normalcy.  I craved the kindness.  One day Ethan came home from first grade with a multicolored afghan given to him by a fellow classmate.  "She said it was a prayer cloth," Ethan said.  "And when I asked her what that was, she said that her grandmother had make it for me and that her church had prayed over it for me."  Kindness returned.  Now, do I believe that this small afghan holds power? No, but I do believe in the power of the One this grandmother and her church petitioned on behalf of my son.  What greater gift can you receive than the gift of prayer -especially the gift of prayer for your child.  The miracle continues ... At school, I shared Ethan's prayer shawl story with my friend Joy Mac who had endured difficulties of her own this past year.  I shared my concern that this family may never know how they had touched my heart.  How my heart sang to my God who had laid my child on their hearts.  The following Sunday at her church, Joy Mac, too received a prayer shawl, given prayerfully in love that she might enjoy the fruits of a healthy pregnancy.  Joy relay Ethan's story to the gift giver and how my heart was touched as was her own.  The gift giver's eyes began to fill with tears, for her family had made not only Joy's quilt, but Ethan's as well.  This family heard my heart felt thanks that morning ... even though I have yet to meet them face to face.  This grandmother who crocheted Ethan's blanket was going through her own battle.  In fact, she had fallen and injured her foot and ankle so badly that she was wheelchair bound.  As she began to question why God allowed this to happen, perhaps her granddaughter thought of the little boy in her first grade class who sat in his wheelchair, desiring to run and play with his classmates, and learning to accept life's challenges and God's will.  Please remember that I cried when Ethan was moved to this first grade classroom away from most of his little friends.  Ethan's best buddy in this class, Noah, is a little boy who struggles with Charge Syndrome ... who has hearing difficulties and cannot speak because of a trachea.  I commented to his mother that if Jesus came back their classroom is where I wanted to be.  I want to see the lame walk, the deaf hear, and the closed mouth speak!Oh God, how you knew Noah needed Ethan to be his friend ... to see another face challenges like him each day.  How you knew this grandmother would need to hear about Ethan's struggles! From her wheelchair she is serving the Lord, and her service to my son gave me the chance to glory in His greatness, in his Omnipotence!  What a mighty God!  Oh how my heart sings in praise of my God.  Why did He intervene?  Why did He extend such mercy and grace?  What must he have in story for my now 7 year old beautiful boy ... and for Noah ... and this grandmother? Oh, how I thank Him.

One of my newest, favorite songs:  "Someone Worth Dying For" ... includes these lyrics:

I wanna believe that
I'm not just some wandering soul
That you don't see and you don't know
Yeah I wanna believe, Jesus help me believe that I
Am someone worth dying for..

Oh, how most of all, I'm thankful that I'm not a wondering soul ... that my God sees me ... and that most of all, He considered me worth dying for.

Fibular Hemimelia -Let's Get "Real" -pains, pants, pictures, and all!

Now, I'm no pessimist; I guess I'm more of what you'd call a realist --and the reality of a leg lengthening surgery is "real" hard.  (Yeah, I know it should be "really" -but just follow along with the "real" theme).  Yes, I know that Ethan's outlook is "real" good and we have been "real" blessed by all those who have helped us get through these last few months, but there are things that I wished I had known beforehand to better prepare my heart and my mind.  Honestly, though, I have doubts about publishing this post because sometimes too much information is just that --too much to handle.  Knowledge is power, though --and perhaps someone can make a wiser decision after reading the blog or at least know what questions to ask at a doctor's visit.  Perhaps you can begin praying more specifically for your child when you know what they will face.

Nevertheless, this is my "Real" list:

1.  Your child will be in "real" pain about 4 days after surgery when he/she is weaned off of the epidural.  Watching your child's realization that this "thing on their leg" hurts --will hurt you more than you might have expected.  However, once pain meds are regulated, the pain will be tolerable.  Ethan only required pain meds before physical therapy after about the third week past surgery.  And even the need for medication prior to therapy stopped around week 10.  Kids are obviously different.  Some kids we befriended were still on pain meds every 4 hours weeks into their lengthening.

2.  You will be "real" intimidated and down right scared sometimes as you learn to care for your child after surgery.  When you leave the hospital, your next appointment will be in 2 weeks.  Two weeks will seem like a "real" long time --especially doing pin care and turning struts without someone reassuring you that all is well.  The pins will be "real" crusty and "real" sensitive and the cleaning will be "real" difficult during those first few days.  Pool therapy will be the most helpful for cleaning pins --as the water loosens a lot of gunk and aids in cleaning/healing the pins.  Eventually, the pins will calm down.  Ethan's top two pins have drained throughout the lengthening --especially if his leg was bumped.  The leg is so swollen that draining is quite normal.  The wires have proven to be the hardest to clean --simply because they hurt and pull his skin whenever they are touched.

3.  You will wait a "real" long time at a clinic visit --at Sinai at least.   We waited for 3 hours to see Dr. Standard at Ethan's 2 week appointment and then saw him for only 10 minutes!  The next 2 week visit was also a 3 hour wait to see Dr. Herzenberg because Dr. Standard was out of town.  So, the first month left us feeling quite alone and "real" frustrated!  When we saw Dr. Standard at the next visit, we did get much more time --and we able to ask a lot of questions.  We always felt, though, like there should be weekly visits or checks with a nurse to answer questions, etc.

4.  Your therapist will be "real" important!  We loved all of the physical therapists at Sinai.  Not only were they knowledgeable --as they dealt specifically with children with fixators on a daily basis, but I never heard one harsh word spoken in the therapy room despite whining, crying, and generally uncooperative children.  Ethan's main therapist, Sunni, checked his pin sites, reassured us about therapy, and was genuinely sad to see him leave.  The therapists also have a direct line to the PAs on call --which was always the best way to get a question answered or a prescription filled.  What the doctor never warned us about prior to surgery was the reality of physical therapy.  Your child will probably be in pain and may have sessions in which s/he cries.  Doing therapy at home on the off days will also be a challenge --both for you and the child.  I didn't realize that a lengthening procedure could be stopped if PT does not go smoothly.  That is, Ethan worked for 6 weeks to regain the ability to bend his knee.  Had this ability not returned, the turns would have been slowed down or stopped to keep his knee from permanent damage.  The same is true toward the end of the lengthening with regard to straightening.  After his range of motion in his knee returned, the new fear became losing the ability to fully extended his leg.  If a child develops a knee flexion contraction, then a knee bar could be attached to the fixator or they could require further surgery after the fixator is removed.  One child we befriended who was going through a femur lengthening experienced the fixator bar breaking.  After this, the child never regained knee range of motion and the lengthening was stopped --only mid-way through.  We met another child whose bone consolidated so quickly that she had to have a second, minor surgery to re break the leg so that lengthening could continue.

5.  Your child will probably fall and you will probably be "real" worried.  The first day Ethan stayed at the Hackerman Patz house after surgery, we got him up to take a few steps with the walker.  After two successful steps, he feel backward and landed on his bottom.  He screamed, I cried, and we all panicked.  Thankfully, nothing happened.  Only two weeks after surgery, we were in a car accident in Baltimore --a fender bender.  Again, Ethan screamed, I cried, and we all panicked.  After a trip to the hospital and X-rays, however, we were reassured that all was well.  The first week we came home --around week 11 -Ethan fell 4 times!  He turned over a rolling chair, tripped on his shoestring, and slid on the hardwood floor twice.  Again, no problems.  Dr. Standard said that a child in a fixator fell down an entire flight of stairs --this resulted in a broken arm, but no harm to the leg!  He did mention, though, that an older brother sat on a younger brother's "fixator leg" -and broke the bone!

6.  At times, you are going to be "real" discouraged and "real" tired.  Watching your child struggle isn't easy.  Ethan has had very few days in which he has been genuinely discouraged or cried because of the fixator.  I, however, have had my share of those days!  It's hard to watch him being left out as his friends run and play or to see simple things such as climbing stairs become a challenge.  Having a child in a fixator is reminiscent of having a newborn.  In the beginning, I didn't sleep because I constantly checked on him!  Staying in a different city away from your family is probably harder than you think.  But, God can provide you comforting friends.  We met many parents who were in the same situation and took comfort in their presence, rejoicing with them as their children made strides toward healing.  Leaving those friends is also "real" hard!  Going back to school was especially difficult for Ethan in the beginning.  Being in Baltimore, we weren't around a lot of other children.  When first grade started, Ethan commented that school was simply too "sad."  This sadness came as a result of watching his friends play on the playground, participate in P.E., or simply act like kids.  This feeling has waned as time has gone on, and he has simply gotten accustomed to his limitations --especially realizing that his aren't permanent limitations while other children aren't as blessed.

7.  Things will be "real" different after "turning" stops.  I was quite surprised to see the difference in Ethan after we stopped turning the struts.  Honestly, the last few weeks of turning were the hardest, as was therapy.  Logically, his leg was being "stretched" to the limit --as were his muscles and tendons.  In as little as a week or two, therapy was suddenly easy --and evoked little response from him.  Also, since we stopped turning three weeks ago, Ethan hasn't had a pin site infection --despite the fact that he had an infection for at least 6 of the 12 weeks while turning.

8.  You'll ask yourself some "real" hard questions along the way.  Should we have done this?  Was this the right time?  I second guessed myself in spite of the obvious answers to prayer and Ethan's progress.  Some days seemed so challenging that I wanted to find the mother in the Sinai video who says that the leg lengthening was all "butterflies and rainbows" for her daughter and ask her what drugs she was taking!  All kidding aside, right before turning stopped, if asked, I would have said I would not do this over if given the chance.  Today, however, I am glad; sometimes with the end in sight, our "sight" becomes clearer.

9.   Your attitude will be "real" influential.  Ethan has done well despite my meltdowns because he hasn't seen them!  Yes, he has heard me say that I want the fixator off and I want him to be able to play again --even to wear two shoes again or to simply take a bath!  However, more often, he has heard me say that God can help us get through this --that we need to be thankful for a doctor and a procedure that will change his life --that this, too, will pass!

10.  Finally, your need for your Savior will be "real" apparent --so much so that it will change your life.  Knowing that there are things that you cannot change and comfort that you cannot bring will send you to your knees, bowing humbly to the only One who can bring both peace and assurance.  I have come to greater knowledge of our God and for that I am thankful.  I tell Ethan that God entrusted him with this condition and these months of difficulty and this is one of his chances to bring honor and glory to the name of God.

"REAL" CUTE PICTURES!

Did I mention that your child's leg will get "REAL" HAIRY?!  Apparently, the fact that the leg never exfoliates creates a very hairy result!

 Riding His Sister's Pink Powerwheels 4-Wheeler, is well, "Real" Cute! -and an excellent way to transverse the yard!

Oh, and Emily is still "Real" Cute, too! 

Playing with your sister in leaves is "real" fall fun!
 ..............
Finding pants has been a "real" hard task.  There are very few places that offer snap off pants anymore!  Thanks to the grandparents, Ethan has a few pairs of adapted pants as well!

 

Finally, duct tape will be "real" helpful when it's time to tape down the struts and the lifted shoe makes a "real" difference!  The right shoe had to be lifted to compensate for the fixator -and it stopped him from falling and made him much more secure on his feet!