Fibular Hemimelia -Celebrating Life Wonderfully Made

Psalm 139:14

King James Version (KJV)

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

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

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

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

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

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

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

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

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

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

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

And I recall the command:

Philippians 4:4

King James Version (KJV)

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

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

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

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

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

 

Purpose

Isaiah 43:7  -Even every one that is called by my name: for I have created him for my glory, I have formed him; yea, I have made him.

 

I know what it is --our purpose in being here -on Earth, in southwest Virginia, in Dot, on Fields Drive.  It's to glorify Him.  I get that.  I cling to that truth, often losing it in the busyness of church and gymnastics and guitar lessons and baseball camp and spilled Cheerios.  I fight my way back to that truth at night when I wonder what I look like to Him, here in Dot, when the gymnast and the baseball player and the guitarist -and their dad -are asleep and it's just me and Him and my works spread bare before Him.  Glorifying --is that how I look --to Him?

 

Because it's not often how I feel.  Selfish, maybe, or tired.  I think that's how I must look.  Anxious -even anxious to please -is the face that I wear most nights --at least if I'm the one who's looking and judging and measuring up.  I do a lot of self measurement, and my ruler leaves little room for grace.   

 

I think of her, eating ants caught by her bed.  Ants  caught  by  her  bed.  And I think of my sweet girl, in her pink room, baby dolls nestled by her side.  And I wonder why --but mostly HOW or WHAT.  

 

What does YOUR glory look like? and HOW can it be fulfilled in me?  How can I reach her and teach her to think of more than herself?  

 

We pray for the Lord to give us a great work to do --a real work --a work that wells up inside us and spills out into the world.  And we wait, and I wonder, and I measure, and fall short.

 

And we give a ride to the woman at the grocery store who was on her way home with bags and no car.  And we promise to return to mow the grass that reaches up to her window sills.  And Emily asks if the woman is poor, and I say, "Not today."  And the work wells up and spills over.

 

And we pray to be spilled for Him who spilled Himself freely for us, to set us free.

and the Lame shall walk

 

My Sunday School ladies and I are making our way through Nehemiah, noting his faithfulness as he answered God’s call to rebuild the walls of Jerusalem.  God gave him a vision –compassion for His people who were hurting, living sinful lives behind unfortified walls.  Nehemiah, if you recall, was the cupbearer to King Artaxerxes, living in Shushan the palace in Persia.  In fact, he had lived his whole life in Persia, his family more than likely not returning to Jerusalem 70 years earlier when the Jews were granted freedom to return from exile.  Yet, Nehemiah was a Jew and Jerusalem was the home of his people; in fact, when his brother brought him word of the great affliction of the people who were left in Jerusalem and their broken down wall and burned gates, he wept, fasted, and prayed.  What he does next, however, is worth our attention.  He gets up, God answering his prayers by telling him of the work he is to do, asks Artaxerxes for permission to work on the wall, and goes to work, enlisting the help of everyone –from carpenters to apothecaries to priests to the daughters of the sonless men.  In 52 days, the wall is rebuilt, and Nehemiah begins his greater assignment –bringing the people back to the law which brings them to repentance. 

In a world in which there is Steubenville and Gosnell , we question How and Why and seem to forget that it’s all Sin and broken walls and burned gates and afflicted people.  And we wonder at the state of the world and gawk at headlines and make status updates of our “thoughts being with the hurting.”  Maybe we utter prayers.  Maybe we weep.  Do we fast?  Do we listen for His voice?  Do we rise to the calling of the wounded, His People who are perishing who have forgotten Him.  Do we take them back to the Word, to the Living Word, to the One WAY?  Do we help them fortify walls and rebuild burned gates?

In Acts 3, we read of another gate, this time an entrance to the temple within the walls of Jerusalem.

“2And a certain man lame from his mother's womb was carried, whom they laid daily at the gate of the temple which is called Beautiful, to ask alms of them that entered into the temple."

This story, of the lame man, grips me.  Maybe I see my little boy, challenged from his mother’s womb, born 2000 years before external fixators and shoe lifts and 8-plates and the Sinai hospital, sitting at that gate, carried there on the arms of friends.  Maybe I see him, limping and disgraced, cup lifted to those headed to the temple.  Maybe I pray that someone looks at him, really looks at him, before entering that gate called Beautiful and leaving him hurting and alone.  Maybe I pray that I wouldn’t have left him there lame and broken by sin.  That I would have SEEN him, would have realized that he was one of HIS children.  Maybe I pray for eyes to see ALL HIS CHILDREN to carry them to the gate, to the Christ, who alone can HEAL ALL WOUNDS.  That when I read of Boston and Texas, I get off of facebook and put my face to THE BOOK, my HEART to the heavens, and MY HANDS to SERVICE -- to the carrying of the lame to the KING, maybe not in Boston, but here, next door, next pew, next classroom, next to me on the bleachers at the JV game. 

Peter and John meet this lame man.  Not only do they look at him, they tell him to look at them.  And they perform a miracle in the Name of the MIRACLE MAKER:  “In the name of Jesus Christ of Nazareth rise up and walk.”  They extend their hands before he can even answer and raise him on his feet –“immediately his feet and ankle bones received strength.”  Do you need strength to stand today?  Are your feet and ankle bones taxed with anxiety, with fear, with guilt, with remorse, with doubt?  There is ONE whose HAND extends to YOU.   He will give you strength.  Are you HIS EYES today?  Are you carrying, extending?  Or are you on your way to worship, yet never see? 

One day this youngest boy of mine will stand in a kingdom with feet and ankle bones strengthened and whole, with a praise for HIS KING that I, with ten toes and aligned tibias and femurs, cannot fathom.  His weakness here will make his walk through that gate called BEAUTIFUL there all the more sweet.  While we are HERE, we must drag ourselves to Him, wall restorer, gate fortifier, and carry as many with us as outstretched arms can hold.

FIERY TRIALS

REJOICE. PRAY. GIVE THANKS. HOLD FAST.

This little stash of make-up isn’t an ad for Estee Lauder or even a look at what it takes to make me presentable in the morning. Its significance goes beyond covering up imperfections, and instead points to the ending of a month of difficulty. As I put away the mascara and the blush this morning, I thanked God for His unending mercy and grace, for the fact that I was putting this away in my own bathroom this morning and not in the hospital room of a sick little boy. One day, a little over nine years ago, I took a little boy to the ER because of a severe headache, and I didn’t come back home that night. Instead, I frantically called my mom in the hospital parking lot and spoke words that haunt her to this day, “Josh has a brain mass.” That night long ago ended with an ambulance ride, an IV, and an MRI. A few days ago, I was afraid of reliving that nightmare again; I was packed and ready.
When the doctor tells you that your son’s blood tests are abnormal and that no conclusive reason can be found for his recurrent fever (19 days of fever in one month) and that the next logical step is a trip to St. Jude to rule out leukemia or lymphoma, you stop breathing, your chest seems too weighted down with fear to move in the up and down rhythm required in simply breathing. The colors of life seem to diminish.

Let me back up a bit.

Ethan has a rap sheet of illnesses, fibular hemimelia obviously being a major one, but he has also been diagnosed with PFAPA, recurrent fever. About every 4-5 weeks, starting around age five, he had a fever for about three days with no other symptoms. This fever proved frustrating and was accompanied by many doctors’ visits and negative strep, ear infection, flu, etc. tests. Finally, an infectious disease doctor gave us the PFAPA diagnosis along with a prescription for tagamet and prednisone, and we have seen the fevers diminish greatly. This month, however, his “normal” fever went beyond the typical PFAPA symptoms and seemed relentless in its attack of his body, escalating to 105, sometimes with a strange rash. Again, we were met with testing for the typical kids’ junk: flu, strep, mono, etc., and all proved negative. Then, when the fever keep returning, he was tested for the next stage of diseases: lupus, rheumatoid arthritis, Kawasaki syndrome, etc. –all of which came back negative. After infectious disease and autoimmune disorders, the next step was oncology.

Let me back up a bit.

In the ten years since Freddie and I have been married, we have endured Josh’s brain mass and subsequent surgery, Freddie’s own brain mass and surgery, Ethan’s birth, fibular hemimelia diagnosis and external fixator surgery, Emily’s birth that literally tore my uterus, resulting in blood transfusions and a near mental breakdown.

Let me pause for breath and be real honest.

Sometimes I get hung up on the list. Sometimes it makes me angry. Sometimes I look at others and wonder why their lists seem much shorter in comparison. Sometimes I wonder what HE is thinking.

Let me tell you what I’ve learned.

I’ve learned that we all have lists, and relatively speaking, they’re all difficult to bear.

I’ve learned not to bear mine alone.

I could write and write about the things God has taught me through my list, but I’ll stick to the latest lessons with this post. This time, He taught me about the Body, the Word, and Grace.

THE BODY

My dad danced when we found out that what doctors suspected was a malignant brain tumor turned out to be a malformed blood vessel in Josh’s brain. My mom cried when I called to say, “No leukemia, no cancer.” Today, a friend at little league sign- ups could not have smiled any brighter when I responded to his hesitant questions, “Ethan’s fine.” My church family and friends joined me last night (and nine years ago) in my praise of the God Who Heals. My children’s victories have been their victories, too. Through prayer, we unite and become instruments in God’s sovereign plan. God knows we need one another. In fact, Christ’s final prayer before the cross was that we be as One.

John 17: 9 I pray for them: I pray not for the world, but for them which thou hast given me; for they are thine. 10 And all mine are thine, and thine are mine; and I am glorified in them. 11 And now I am no more in the world, but these are in the world, and I come to thee. Holy Father, keep through thine own name those whom thou hast given me, that they may be one, as we are.

We are His hands, and this month, those hands enveloped me in prayer and encouragement.

THE WORD

A godly friend encouraged me to surround myself and Ethan with the Word of God. I knew that the Word was powerful, but during this trial, I learned to wield the sword. I printed verses of healing and put them in my pocket, in Ethan’s room, and even under our mattresses. I opened a Bible to these verses –and sat it opened beside his bed.

Mark 1: 29 And forthwith, when they were come out of the synagogue, they entered into the house of Simon and Andrew, with James and John. 30 But Simon's wife's mother lay sick of a fever, and anon they tell him of her. 31 And he came and took her by the hand, and lifted her up; and immediately the fever left her, and she ministered unto them.

I told Ethan with great confidence that satan could not cross over the Word to reach him in his bed, and I prayed, cried aloud to the Lord, to lift Ethan up and to heal him of his fever as He had healed Simon’s mother-in-law. And then I wondered, why I wasn’t crying for my other children, my marriage, my home with verses raised and repeated back to the God who spoke them.

GRACE

This past week, the week of Valentines, gave me a glimpse of the One who calls me His Beloved. On the day that the packet from St. Jude came in the mail, before I could open the envelope, I first had to plow through cards and letters sent from my church family and friends, full of verses of encouragement and promises of prayer and healing. The Lord sent a mailbox full of love notes, promises made and kept. He saw me in my pain and in my tears, and He made sure that I saw Him. On the way home from school a few days before the appointment, Josh and I saw a beautiful rainbow, shining through a few drops of rain. Oh, how I marveled at the beauty of that bow, its otherworldliness, almost unreal in its appearance. And how my heart recalled the promises of the Lord, promises to work things to my good, to never leave me nor forsake me, promises of the availing of my prayers despite the rain.

God is Real. He sent real cards. He put our family on the hearts of a group of students who gave a sweet card and 86 dollars, mainly in ones. He put our family on the hearts of another family with small children who sent drawings and 40 dollars for gas and food. He put our family on the heart of a sweet man in our church who folded a 100 dollar bill into my hand after the church gathered as one to pray for Ethan. Did I mention that Ethan’s ER trip and CT scan cost $200 dollars beyond what our insurance would pay and that when Ethan picked the Golden Corral for his celebration lunch –can’t resist the chocolate fountain-- it cost $27 dollars? He paid our bills, really.

Let me keep praising.

We left St. Jude with negative test results. We still aren’t sure what caused Ethan’s fevers or if his future holds other months of sickness and uncertainty; we have a few possible causes, such as Juvenile Rheumatoid Arthritis, but no definitive answers. We hold to the real possibility as well that the Lord has seen fit to deliver him completely from this sickness.

What is True.

What we do know is that God sees us, He provides for us (to the penny of our every need), He loves us, and He intends our “lists” to prosperous us and not to harm us. Please re-read the verse that heads the blog. Praise be unto His name forever!

1 Thessalonians 5:
16 Rejoice evermore.
17 Pray without ceasing.
18 In every thing give thanks: for this is the will of God in Christ Jesus concerning you.
19 Quench not the Spirit.
20 Despise not prophesyings.
21 Prove all things; hold fast that which is good.
22 Abstain from all appearance of evil.
23 And the very God of peace sanctify you wholly; and I pray God your whole spirit and soul and body be preserved blameless unto the coming of our Lord Jesus Christ.

shameless pictures of their cuteness