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!

Fibular Hemimelia: At the Cross

I was asked to speak tomorrow night at a ladies' fellowship meeting in order to share my thoughts about this summer and how I've grown spiritually.  Hmmm .... which lead me to ask myself, "How have I grown spiritually?"  Well, the blogs have slowed down a bit since being home for two main reasons:  1.  The world outside the basement is, in many ways, much more stressful than was the world inside the basement.  2.  I've had some struggles. 

What?  Me, struggle?  The blogger? 

If you know me at all, then you know that I suffer from a terrible disease:  perfectionism.  Apparently it's not contagious, and the symptoms are wide ranging:  anxiety, fear, workaholicism, weariness, and feelings of inadequacy.  Odd symptoms I know for a disease that involves trying to be perfect, but hey, it's exhausting.  I apply my disease to all walks of life:  my marriage, my mothering, my teaching, and even my blogging --which means that I don't want to blog until I have things "figured" out, something profound to say.  Unfortunately, life isn't easy to "figure" out and just when I think I have things "figured" out, something happens to blow my theories to bits.

There is a cure for my disease, though.  And it's found in the most humble of places ... at the foot of the cross.  There, I lay down my imperfection and allow His perfect sacrifice to cover me --to cover all the places I need hidden, those hurtful places no one sees or even knows exists.  It's only then that I can rise and share something profound --profound not because it comes from me, but becomes it comes from Him.

So, what has He told me lately?  What did He allow me to realize this summer?  Hold on now, some of this you've heard before, but it bears repeating.

1.  He is Sovereign. 

Matthew 6:26 -²⁶Behold the fowls of the air: for they sow not, neither do they reap, nor gather into barns; yet your heavenly Father feedeth them. Are ye not much better than they?

Life lessons.  They're for the birds!  My Heavenly Father knew the needs I had this summer and provided for them in quite miraculous ways.  He knew we needed a place to stay, and He gave us not just a basement apartment, but a family to look after us during the hardest summer we've yet to experience.  He also timed Hurricane Irene to hit the Baltimore area two weeks after we'd packed up for home.  The resulting damage to the basement was quite severe; in fact, my Baltimore family jokingly said that we would have floated out of the basement on our air mattresses!  My God knew that we needed financial help as well; two public school teachers hardly have the means to pay for thousands of dollars in surgery and physical therapy costs.  What a blessing that the cost of living in Maryland so exceeds that of Southwest Virginia that we qualified for 100% financial aid at Mt. Sinai.  The $48,000 surgery bill we received yesterday, we don't have to pay.  You could only imagine the looks on our faces when we opened the letter that explained we'd be responsible for zero dollars!  What a miracle that He burdened the hearts of so many to give to us; we left Virginia with gift cards that paid for many meals and several tanks of gas. 

You have to realize that these answers to prayer came after I cried and worried and prayed and cried and worried and prayed some more! What did God teach me?  That I am a bird of the air -no, better -- I am a child of the King!  At first I thought that I must have been doing something right for God to so richly bless me --to supply all of my needs.  But He quickly reminded me that I don't earn GRACE.  God lavishes us, not because we deserve it, but because He loves us.  Notice those birds --they don't reap or sow, yet God cares for them.  Oh, He cares for me, too! --And He cares for you!

2.  We see Him through the CLOUDS!
I'll refer back to Oswald Chambers:  "It is not true to say that God wants to teach us something in our trials. Through every cloud He brings our way, He wants us to unlearn something. His purpose in using the cloud is to simplify our beliefs until our relationship with Him is exactly like that of a child— a relationship simply between God and our own souls, and where other people are but shadows."

So what have I unlearned?  I've unlearned that blessings come only through joy!  I've learned that when your circumstances are difficult, you seek the Lord.  And His Word tells us:  "And ye shall seek me, and find me, when ye shall search for me with all your heart" (Jeremiah 29:13).  The song by Laura Blessing comes to mind:

What if Your blessings come through raindrops
What if Your healing comes through tears
And what if a thousand sleepless nights
Are what it takes to know You’re near
What if my greatest disappointments
Or the aching(s) of this life
Is the revealing of a greater thirst this world can’t satisfy
And what if trials of this life
The rain, the storms, the hardest nights
Are Your mercies in disguise

When did Laura Story begin asking these "What If" questions? --Only after her husband was diagnosed with a brain tumor and the newly married couple struggled with his surgery and postoperative memory and vision loss.

"God has grown us up," Laura states, "deepened our faith, our awareness of our great need for him as a savior, daily. We knew it before, but we didn’t see it. This is a good place to be.”

She, like me, learned to see Him through the clouds.  My need for the Lord became more and more apparent as I watched my little boy struggle, saw him physically weakened and emotionally tired. --And I could do nothing.  I needed my Father to intervene -- to give Ethan the strength I could not muster, the courage I could not supply --And to heal my hurting heart.  He's still doing that --giving us enough strength and hope and healing for TODAY.  For that's something else I've unlearned.  The truth is that only today exists.  Philippians 4:8 reminds us:  "Finally, brethren, whatsoever things are true ... think on these things."  We can only live today ... only handle its challenges and even enjoy its blessings.  Jesus commands us to pray, "Give us this day our daily bread" (Matthew 6:11).  When we begin to pray for today and to watch Him supply our daily needs, then we begin to see Him.

3.  Prayer Changes Things!

Okay, this is my latest battle.  I've grappled with prayer and with what it changes.  Does it change my circumstances, does it change me, or does it change the mind of God?  The answer to the questions:  yes.  Our God who rightly declares:  "I the Lord do not change” (Malachi 3:6) also rightly declares: “My heart is changed within me; all my compassion is aroused” (Hosea 11:8).  Somehow the immutable God of the universe allows us, his children, to play a part in His grand design.  We rouse His compassion and He orchestrates events in order that "all things work together for good to them that love God, to them who are the called according to his purpose" (Romans 8:28).

So I'm learning "by prayer and supplication with thanksgiving" to  "let [my] requests be made known unto God" (Philippians 4:6) and to sit still and watch Him work it out for my good and His glory.  I'm learning through the example of Jesus, to ask from my heart, yet yield to His will:  "And [Jesus] went a little further, and fell on his face, and prayed, saying, O my Father, if it be possible, let this cup pass from me: nevertheless not as I will, but as thou wilt" (Matthew 26:39).

4.  "God has a special place for those who feel left out."

After Josh's brain surgery, we spent a pain staking three months waiting for his skull to heal.  This meant no running and playing and no P.E. or playground time at school.  For a little boy whose only request on his third birthday was "a big pile of gravel," this was a long three months.  Freddie's grandmother's sister, Barbara, feeling Josh's pain, gave him a book titled The Crippled Lamb by Max Lucado.  This book has long since been buried in a book shelf spilling over with children's books.  Just the other day, however, I stumbled across it again, and decided it would be Emily's story before bed.  Now believe me, I hadn't read this book in years.  Brace yourself ... and get out the tissue.  The first page reads:

Once upon a time there lived a little lamb named Joshua.  He was white with black spots, black feet, and ... sad eyes.  Josh felt sad when he saw the other lambs running and jumping, because he couldn't.

Josh had been born with one leg that didn't work right.  He always limped when he walked.

  When I read those words, my heart melted.  This BOOK, a gift for Josh, given eight years ago-- before Ethan was even born, was Ethan's STORY.  It continues ...

Abigail was Josh's best friend.  She was an old cow, and her voice was always kind and friendly.  Some of Josh's favorite hours were spent with Abigail.  ... When Josh got sad[,] ... Abigail would say, "Don't be sad, little Joshua.  God has a special place for those who feel left out."

Where is that place --the place for those who feel left out?  Well, for Joshua the crippled lamb that place is in a stable, warming the baby Jesus with his wool.  How did this little lamb, troubled and alone, make his way to Jesus?  You have to read the rest of the story ...

Had he been like the other sheep, he would have been away in the valley.  But since he was different, he was in the stable, among the first to welcome Jesus into the world.

For those who are hurting, who feel lost and alone, there is a place of quiet rest ... at the feet of Jesus.  Perhaps God allowed your difficult circumstance to bring you near to him.  For, "The LORD is near to the brokenhearted And saves those who are crushed in spirit" (Psalm 34:18).  There are many "away in the valley"; thank God if He has brought you back to the stable! 

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Charles Spurgeon asked, "How can you act as a guide through the wilderness if you have not walked through it?"  God allows our circumstances to point us back to the cross, and then we, in turn, are called to point others to Him.  Let your little light shine!

Fibular Hemimelia: Welcome Home

Let me tell you, a little place called Dot just warms my heart.  We are SO glad to be HOME!

Being home almost a week, we have certainly been met with some challenges.  Ethan is starting with a new therapist, getting a new shoe lift --ironically for the right foot because the fixator itself makes his left leg longer than the right which makes straightening his leg impossible, and he is about to venture into first grade!

It's this last "venture," the 1st grade one, that has been the most difficult for me to face.  Naively, I supposed that a child with a wheelchair and walker who needs assistance when ambulating would be given an aide in the classroom.  Unfortunately, this isn't the case.  Ethan's only option is switching to a first grade classroom that contains a teacher and an aide for special education students.  We've chosen this option because we believe that he will be safe with these two teachers and the school administration and staff --who understand the seriousness of something such as him falling.

Okay then, if I believe that he will be safe, what's the problem?  Why the blog?  Because sending him to first grade means that I am sending him beyond my reach, my watchful eye, my listening ear, and my aching heart.

Pulling into my driveway, I thought I was coming back from Baltimore much stronger in faith than when I left.  In fact, I have marveled and openly and honestly praised the Lord --mostly for his Sovereignty!  Yet, the first moment Ethan gets beyond MY control, my first reaction is to panic or to worry or to fear.  Darn it, Satan, you know my weaknesses!  Thankfully, my Heavenly Father does, too.  In fact, He keeps growing me --by giving me practice in my weakest area:  letting go.

I'm a crier --you know that by now, and last night was no exception.  I kept saying, "Lord, we've brought him this far.  I don't want to leave him now.  I'm so afraid that something will happen to him."  What God did, though, is that marvelous thing that He does when we go to Him with a broken and contrite spirit (Psalm 34:18). He came near.  He simply pointed out that I give myself way too much credit.  He had, in fact, brought Ethan this far, and He would gladly stay with him at school.  If I would kindly get out of His way, He would fulfill His promise to prosper Ethan and not to harm him (Jeremiah 29:11).  When God changed that "we" of my thoughts to that "He," He also exchanged my fear for peace.  If I truly believe that God's will for Ethan's life is perfect, then I have to believe that whatever God allows is for Ethan's good and God's glory.  Easy truth to write down, but a hard truth to follow --except for the fact that this truth ultimately gives to me  burdens lifted.  Thank God, I'm not responsible for Ethan's health because I am quite fallible.  Yes, God expects me to use the intelligence and nurturing spirit that he has given me, but God has Ethan's health safely in His hands --and I have to leave it there.

George Mueller, a remarkable Christian man who established orphanages in the late 1800s and preached to thousands, clearly understood God's Sovereignty and Love.  He accepted no salary and never directly asked anyone for funds for the orphanages.  He simply prayed for his financial needs to be met and then watched as God met each one!  Oh, what simplicity in trusting God!  What freedom from fear and worry!  I'm so glad that He loves me so much that He's giving me yet another chance to trust in Him and in His Word!  He's not finished with me, and as a great friend pointed out today, had this been even a year ago, my ability to Let Go and Let God, would have taken so much longer ... and required of me so many more tears and sleepless nights!  One Glorious Day, He will complete in me this work that He has begun (Philippians 1:6)!

Mueller inspires me --as he put his trust in God.  He profoundly reminds us: "'The Lord God is a sun and shield, the Lord will give grace and glory, no good thing will he withhold from them that walk uprightly.' Now, if we have believed in the Lord Jesus Christ, we have received grace, we are partakers of grace, and to all such he will give glory also." Mueller recognized that he was a sinner, but had been saved by grace through faith in the Lord Jesus Christ; therefore, he knew that no good thing would be withheld from him.  He was "satisfied with God," and explained that his satisfaction came from "taking God at his word, believing what he says."

The following quote is a plea from Mueller to all believers:

My dear Christian reader, will you not try this way? Will you not know for yourself . . . the preciousness and the happiness of this way of casting all your cares and burdens and necessities upon God? This way is as open to you as to me. . . . Every one is invited and commanded to trust in the Lord, to trust in Him with all his heart, and to cast his burden upon Him, and to call upon Him in the day of trouble. Will you not do this, my dear brethren in Christ? I long that you may do so. I desire that you may taste the sweetness of that state of heart, in which, while surrounded by difficulties and necessities, you can yet be at peace, because you know that the living God, your Father in heaven, cares for you

Oh, Christians.  Let's try this way ... God's way!

Fibular Hemimelia -GOODBYE BALTIMORE -

Goodbye Baltimore,

Goodbye City Streets,

 

 Goodbye Crowds and Goodbye Treats.

Goodbye Sweet Kids Who Came to Play,

 

Goodbye New Friends,

Goodbye Chesapeake Bay!

 

Goodbye Hospital,

Goodbye Miss Sunni,

Goodbye Pool Therapy and Smiles that are Funny!

 

Goodbye Kate,

and Goodbye Jake!

Goodbye Nice House,

 

And Goodbye Mouse!

Goodbye Mr. Moesha, 

Goodbye Miss Kim,

Goodbye Alli, Getting Ready to Swim.

Goodbye Cassidy,

Goodbye Sweet Marcie and Doug, too!

Goodbye Alister who takes care of the pool, 

Goodbye Alivia, the sweet little girl with a fixator, too!

Goodbye Mailbox,

Goodbye Ocean,

Goodbye O's,

And Goodbye Long, Hard Road!

The Fields Family is Coming Home!

Fibular Hemimelia: Oh, Cloudy Day!

Have you ever read a simple devotion that touched your heart in such a way that you knew the author must have been writing just to you?  Well, Oswald Chambers must have had me on his mind when he penned his famous work:  My Utmost for His Highest -especially on July 29th.

Most Christians are quite familiar with the old hymn "Uncloudy Day," but in case you've forgotten:

Oh, they tell me of a home far beyond the skies
And they tell me of a home far away
Oh, they tell me of a home where no storm clouds rise
Oh, they tell me of an uncloudy day


An uncloudy day, then, is a day without sorrow or pain --a day when our faith will finally become sight and Heaven will be our home.

We associate cloudless skies with joy and clouds with sorrow, but Chambers provides a different perspective.

He writes:

Do you see Jesus in your clouds?

"Behold, He is coming with clouds ...." Rev 1:7

In the Bible clouds are always associated with God. Clouds are the sorrows, sufferings, or providential circumstances, within or without our personal lives, which actually seem to contradict the sovereignty of God. Yet it is through these very clouds that the Spirit of God is teaching us how to walk by faith. If there were never any clouds in our lives, we would have no faith. “The clouds are the dust of His feet” (Nahum 1:3). They are a sign that God is there. What a revelation it is to know that sorrow, bereavement, and suffering are actually the clouds that come along with God! God cannot come near us without clouds— He does not come in clear-shining brightness.

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There is a connection between the strange providential circumstances allowed by God and what we know of Him, and we have to learn to interpret the mysteries of life in the light of our knowledge of God. Until we can come face to face with the deepest, darkest fact of life without damaging our view of God’s character, we do not yet know Him.


What beautiful truths that I had never considered.

When my oldest son Josh was diagnosed with a brain mass at the age of five, I came face to face with an aspect of God that I did not understand:  His Sovereignty.  I actually thought that I had a measure of control over Josh's life.  I believed that as long as I took good care of him, then he would be okay.  Isn't that often what we, as parents, tell ourselves in order to feel safe?  Yes, God entrusts us with our children while they are here on earth, but their lives are in His hands, not ours.  At first the idea that God would decide what was best for Josh --even if that meant brain surgery --was an overwhelmingly fearful one for me.  Giving up control left me feeling just that --out of control.  What God wanted from me was submission --the handing over of all aspects of my life to Him, including my children.  He slowly replaced my fear with faith.  Ultimately I realized that Josh was better off in the hands of an all powerful, all knowing, loving God --than in my hands.  Talk about a cloudy day.  The day we heard the words brain mass,  I remember calling my mom in the hospital parking lot, screaming and crying in fear. Without this cloudy day, however, I wouldn't know my Father and the peace found in submitting to His Sovereign will.

Throughout Ethan's surgery and recovery, we have seen our share of cloudy days.  As I think of what I've most learned about my God through this experience, His Provision most comes to mind.  I've always prayed for needs that arise, but never have I seen God answer so specifically as He has this summer.  Although there is housing available in Baltimore for the families of children undergoing limb lengthening surgeries, the housing is expensive --especially for two public school teachers.  So, we prayed for financial help.  What we didn't expect was to find the Ensleys, the family of family that has become our family now --who offered us a home away from home, complete with playmates for Ethan and Emily and more love than we could have hoped.  What we have learned from this family is to cultivate a heart of generosity; I can only hope to give to others as they have so generously given to us by opening their home and hearts.  Although we will certainly be glad to pack up for home, I will shed bittersweet tears for the family who provided more for us than they will ever know.  What my children have seen, then, is the hand of God --his Provision for our needs that have been beyond what we could have thought or prayed (Eph 3:20 ).  Because of Ethan's surgery, we know Him more.

Each cloud in our lives is an opportunity to know our Father.  I've had time this summer to study a lot about God's Sovereignty versus man's free will, an issue that has been so difficult for me to reconcile.  What God has finally taught me, though, is that whether he decrees suffering or allows it to happen or whether we chose Him or He chooses us, He is God alone and is worthy of my praise.  He is all of His attributes all of the time:  Sovereign, Truth, Love, Holy, Justice, Spirit, Life, Immutable, Omnipresent.

Our Sovereign Lord has taught Ethan much this summer.  As he sat out during recess time at VBS tonight, watching other children playing a game that he'd love to play, I realized that he has gained an understanding of those with limitations much more so than other children -and adults.  As he has struggled to regain the ability to bend his knee, he has learned that daily discipline, though difficult, produces lasting results.  As he has prayed for his Jewish therapist, he has learned that only one thing in life matters:  your relationship with Christ.

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A blog cannot be complete without a few pictures.  The following pics are from our trip to Lancaster, Pennsylvania.  Although I am quite impressed with the Amish "plain" style and respect their desire and willingness to distance themselves from the things of the world, there is one attribute of our Father that they do not embrace, and I could not live without:  Grace.  Oh, Lord Jesus, thank you for showering me each day with the grace that I do not deserve.

One last note:  my favorite cloud song -"Days of Elijah"

Behold he comes
Riding on a cloud
Shining like the sun
At the trumpet's call
Lift your voice
It's the year of jubilee
Out of Zion's hill salvation comes