Friday, January 27, 2012

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...  

Saturday, January 7, 2012

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!)