God and Bruce Lee

I am writing it all down so I can tell her someday in the words of one of my favorite songs, that it "looked like the evil side would win," but it was "LOVE that wrote the play."  And in this darkness LOVE will show the way...

After Mother's Day, things started to look a little worse for Grace.  We had sounded the call for healing and that palate seemed to just sit lower in her little mouth to spite us, on her tongue for most of the days beginning the week.  Just the sheer uncomfortable nature of her mouth being full of something just barely attached was good reason as to why she was completely miserable, crying and frustrated all day long.   I would be too.  It was heartbreaking and we couldn't do anything to help.  Add to that, her inability to eat and drink enough with that happening and we found ourselves exhausted and confused about what direction to take come Tuesday.  A dear friend stopped by that day, and I found myself grieving the entire thing; crying and certainly not sounding very eloquent or theological at all.  It had become very simple for me in the chaos.  I wanted Grace to heal.  I knew God is good and that He loves me and loves her and loves us but I don't quite understand.  I was  honestly being tossed about in that divine mystery of a windstorm of how Satan prowls around ready to devour and a Sovereign God who sees and allows, and the working of things to good and sifting like wheat and the testing and Job and David crying out and what we are really battling and the Great Physician and for some tearful hours that day, I was spinning a bit and in a crisis of how to pray about it.  Ultimately, I knew it would be ok somehow and someway, but it was as if I was spinning and could see the eye of the storm and had the capacity to jump to it when ready.  But the spinning was fast and I knew I could miss it and needed to land soft and center.  Because the eye held peace and I knew I just wasn't there yet.

Heap into that windstorm the effects of adoption.  I'll speak honestly here because I don't really know how else to explain it.  My hope is that it will encourage and link arms with a stranger or friend who is about to be there or is in it currently.  In that spinning I carried tremendous guilt.  Guilty that we had paid Grace's ransom only to bring her here to encounter not one surgery complication but now two.  Nothing had gone right for her and the result was pain.  Physical pain and emotional pain that reintroduced trauma back in (don't worry, we've instructed it to go).  Guilt that we were messing her up and our other children up and that I could possibly be looking at months logged into the hospital and a summer gone by.  Guilt and grief as I had "lost" some summers a time back when I couldn't stand well and invented every creative game of bubbles and paint on a fence and races and water all from the masqueraded comfort of a lawn chair.  Tremendous pain but smiling for the sake of children.  Trying to do that again this past week and wondering what things would look like.  An all too familiar pang in my heart that I had no intention of revisiting.  And that's when it happened.  When I started to see it for what it was.  Contrary to popular belief, I don't always see it this way.  Sometimes a hang nail is just a hang nail and not a hellish attack on the Providence of God in my life.  Attached to that pang though were some old acquaintances called fear and bitterness that disguise themselves as the comfort of friends.  They are "friends" that I don't care to have anymore and have kicked to the curb in times past.  What came with them was that stench of the enemy that I can smell a mile away.  The adversary, the thief.  Hand always overplayed, guilt and condemnation by the bucket full and in the next two days, an annoying opposition to anything good that we experienced.  In that spinning sort of windstorm it was then I could safely drop into the peaceful eye and into the presence of a loving Father and although I wasn't getting big direction or specific answers, I was getting a flicker of a flame expanded and not snuffed out.  When I got really still, that flame still read "Go for it.  Press in.  It's not about what you see.  The battle isn't against her fleshy palate hanging on by a literal thread.  It is unseen.  Stand here.  Stay here.  I've got this.   But, keep praying what I've already done."

So, we drove that afternoon to the hospital where Grace was admitted for dehydration and was pumped full of good IV fluids for two days to help with her inability to take anything in.  And we danced and sang and begged and tricked and tried anything to get her to take fluids by mouth.  A fight and a battle for sure.  Our clothes reeked of Pediasure and there is puree on blankets and all over furniture as we simply tried to get her to be nourished.  A little more success each day by the milliliter or teaspoon but something.  Cory took over one night so I could sleep at home and get my first 7 hours of sleep in I don't remember when.  A little time with the big kids and back at dawn the next morning.

Back at dawn with my Bruce Lee t shirt on.  A shirt that Cory gave me this Christmas because we think Grace has Bruce Lee hair.  Don't get me wrong, it is beautiful and curly and really unique.  But in the bed head of the morning it is Bruce Lee.  Sort of like when her mom sleeps on wet hair.  Big and powerful.  So I came back with a little sleep and a little fight left and faith the size of a pumpkin seed or two.  I've never seen a mustard seed but when I measured my faith for a miracle that morning, it was pumpkin seed sized and although it felt very small compared to the pumpkin sized faith I carry for other people, I knew it was enough.  It had rooted down some hope and fight that were distracted the day or two before.  So I bribed Grace with the promise of sitting with me and watching cartoons hooked up to machines and all and it worked.  God has been really good at providing little epiphanies of how to meet Grace where she is.  Some little "g" grace for tough moments.  This was one.  I had been kicked and hit and screamed and yelled at by my frightened daughter and she downed the can of pediasure and looked and felt content.  Similar to earlier in the week when she downed a smoothie drink and baby food puree at Target in the cart before we paid for it.  The thrill of "breaking the rules" seemed to do the trick.  I can't take credit though...it was God who knows her and knew she would like the control and excitement where she has none right now.  To pick off shelves and eat it in the store was a pretty big deal and the only food we got in her that entire day before waving the white flag and traveling to the hospital.

So, some success.  But here is the most amazing.  That little palate that had landed on her tongue was raising.  Not so low anymore.  Actually kind of high during parts of the day.  I can tell you honestly that we didn't believe it to be possible.  It looked wrecked.  But, not so much anymore.  It was pink and alive and fitting like a puzzle piece where it should or close to it, like when you find the spot that the puzzle piece should fit and just haven't set it right yet.  In a 30 year career of one of the consulting surgeons, he had only seen this happen eight times.  How about those odds for our little statistical anomaly?  Our surgeon had never seen it.  Another surgeon said he had seen it before, although not often and it heals on its own every time.    The night prior, we had a renewed sense of hope and direction and I remember that Cory and I had prayed for her on each side of that hospital crib.   I was praying resurrection life over her palate (because doesn't that cover it?).  I stole that prayer from a friend and liked it so much that I have added it to my arsenal.  Cory, who I had watched with his head in his hands feel so disappointed at the horrific outcome, was praying raising and sealing and healing with the twinkle back in his eye and he continued to pray in that manner every hour that night when she would wake up confused and upset.  Over and over again.  And we were seeing it.  After about 24 hours, we agree with great joy that her palate is raised.  It just needs to seal now.  We believe it will.

In the last 24 hours, Grace has almost completely turned around.  While eating even just liquids and puree hurts, she is trying more and more.  A friend brought over a beautiful mexican dinner and as we ooohed and awed over the presentation, Grace was pointing and saying "more."  After a week of not eating, she requested and devoured TWO bowls of refried beans thinned out with sour cream and water.  When I called this friend to thank her and tell her of the joy my mama's heart felt seeing my baby eat, she informed me that she had prayed over that food all day long.  That it would be used for God's glory.  It is now known as the anointed refried beans and just confirms that Grace belongs with us and in San Antonio!

Something changed when the Bruce Lee t shirt came on.  Not in a crazy superstitious way but in the way that the natural always reflects the heavenly.  I grew up dozing on a couch on Sunday afternoons when football or golf wasn't on, occasionally seeing a Bruce Lee film that my Dad and brother were watching.  My husband and oldest son can get pulled in too.  The skill and training and work and effort look fluid and well, effortless when you watch him fight.  It is almost like dancing.  We have pondered this week if the Lord is not only raising and sealing Grace's palate, but if He is raising and sealing her in  Him.  Raising and sealing us even more.  Training us in the battle with a great purpose but so it looks effortless next time.  Like  dancing.  It can't look like that without something in the past stretching us towards the next glory.  Not without a deposit of faith when you can't see the outcome.  Not without some bruises or bumps along the way.  Grace starts eating, and my sweet sister in law gets hit with the stomach bug plague at home as she is caring for our older children.  Grace's palate starts to raise and her nose revision stitches fail.  Surgical Complication number three.  We finally get home from the hospital and our air conditioning breaks for 24 hours in 97 degree Texas heat.  Backfist, Front kick, Shadowless kick.  Like a dance.  "And yet I will still Praise you Lord" said outloud to whoever was listening as I bathed a weary baby for the first time in 3 days.  "Really Lord?" said to Him not in a backtalk way, but in a real kind of way, like, "Are you seeing this?  I know you are.  Quite the dance, quite the battle we are in.  Glad we're on your team."  Kung fu moves have styles and names that are expressive and symbolic.  Let me tell you some that we used this past week.  When we were needy, Yahweh-Yireh, the Lord provides.  For relief for a hurting child, Yahweh-Rophi, the Lord who heals.  When there is victory in the battle, Yahweh-Nissi, the Lord our banner.  When the windstorm is spinning and you drop to the soft center, Yahweh-Shalom, the Lord is peace.  And my very favorite move, Yahweh-Shammah, the Lord who is there.

Bruce Lee could take out entire factories of evil workers in a matter of minutes.  I'm sure there will be those who are offended at my mention of him and his cinematic gems in the midst of a post about God, but sometimes wasn't Bruce sort of smiling or had a cocky grin in the process of liberation?  Quite the battle, quite the dance, but He who sits in the heavens laughs.  A joyful confidence.  Because He's already won.  He has won it for Grace.

And for us.  So we will just keep on kung fu fighting.

Sweet little Grace asleep in the hospital bed

Safe with Dad

I was napping in the bed with her and in her sleep that little leg plopped itself on top of mine.  She slept like that another whole hour.  I loved it.

Really wanted to push the bed buttons.  Wasn't allowed to call the nurse station.   So she drifted off to sleep making the monkey do it.

Finally home to a house without AC.  But you still get a bath and get to yell into the fans so it's all good.

A Different Kind of Mother's Day

(I realize that I have been a slacker of a blogger.  Life has been full and rich and good and I haven't taken the time.  I will go back and fill in with fun pictures and updates later on.  I tend to write when I NEED to write and this is one of those nights.  Grace's lip, although needing a revision in about a year, did heal and we are thankful and have just lived life since!  This post deals with her palate repair, that was done earlier this week on May 7th.)



I had a different kind of Mother's Day today.  It is one that I will remember and one that will stand out in the years of flowers and cards.  I woke up this morning with an unusual anguish in my spirit; unusual because it is rare that I feel that way.  I remember feeling it when it looked as though Grace's lip repair would bust wide open with infection.  It did not.  I remember it when I couldn't walk well and the prognosis was grim, but with the help of some metal, I got a second chance on an active life.  I had been up every hour the previous night as Grace struggled and kicked and cried and tried to restlessly sleep.  A response to surgery or painkillers or just agitated in general, her night and our night was rough.  She and I had just had a string of rough nights in the hospital and I am walking that all too familiar "mom fog" that is a combination of adrenaline and hope and protective survival that many new mothers know and I now know is common for mothers who are caring for a hurting child.  The day before, Cory and I noticed that Grace's brand new palate looked as though it was moving and loose.  As the day progressed, we noticed that the one part of the palate was hanging down in her mouth.  That palate that had been so carefully constructed over hours of parents waiting and praying and passing time.  That palate with the "successful outcome" pronounced as the surgeon walked us to her PICU room, where upon just seeing her for a moment, I started crying.  That was my daughter surrounded by doctors and nurses and techs and I couldn't get to her just yet.  My sweet sweet daughter who held my hand in the dark of that room with a swollen tongue that just threatened to obstruct her airway, but never succeeded.  My little fighter who is tough but graceful enough even post surgery to hug and kiss her doctors.  And so this morning, when Cory and I were confident that something was indeed truly wrong and one phone call to the surgeon confirmed it,  the fact that it was Mother's Day only made my emotions that much stronger for my children.  Grieving that my oldest three wanted me to see their cards and homemade gifts and I couldn't just yet, because Grace was crying and agitated and refusing any and all liquids even though she really needed them.  Grieving that I couldn't make it better in that moment for any of them and feeling really helpless.  And that anguish that a mom has when her children are in pain and confused.  And this crazy deep gratitude that the Lord chose me to be their mom.   In the midst of it all.  As helpless and exhausted as I felt, that I still got the job.  It is strange but, I don't know if I have ever been more thankful on Mother's Day.

Now, some reality.  No matter what, I knew and know that it would be ok.  There are some cleft kids who go through 3 palate repairs before it holds.  We know that.  It is rare and we just thought it would be fine this time.  There are mothers who, every holiday, wake up anguished over not being able to make it better.  My day is fleeting and it will get better.  If we have to make a space age palate out of plastic for Grace to wear her entire life, we will do it.  Whatever it takes.  She is ours.  But, this morning, when I spoke to my mom to wish her Happy Mother's Day, I broke.  Sobbed like a girl.  Not because it was terrible, but I heard her voice and how it sounds like mine and how she was mad at the enemy (also sounds like something I would say) for messing with her granddaughter.  I just needed to hear my mom.  I hung up the phone and needed to hear my God.  And I needed Him to hear me.  The sobs turned into prayers without words and the groans that Jesus hears and carries and keeps.  They seemed to say, "Please heal.  I know you do.  She has gone through so much.  Please no more trauma for this sweet girl.  I don't understand why but there is this little place of knowing that you will work it all for good.  Please.  I know you are good in it all."

I love Ann Voskamp's take on eucharisteo.   She took it from the Bible and I have loved that book long.  That thanksgiving that wells up despite it all.  I chose to be there this week.  Please know, it was a decision.  Even this morning.  I was thankful in the sobbing that God was safe to sob too.  That He knew.  That even in my lack of understanding, I trust that He knows.  And cares.  And loves.  I was thankful that I married a man who was praying the Word of God over my daughter.  That the same God that raises from the dead and seals with the Holy Spirit  would raise and seal Grace's palate.  Those are fighting words.  Big time.  No matter what, we trust God but I will camp with that faith regardless of the outcome anytime.  I like how he is betting and WHO he is betting on.  So much so that I'll put it in a blog not knowing how things will turn out because the deposit of faith is so much better and richer and more fun than the cavern of emptiness without.

So, we drove down the highway with our little girl to meet our surgeon on a Sunday.  I was thankful as we drove by the restaurants that I wasn't waiting in the lines and that a very kind friend and mother was making us food today.  Grace, with half her palate hanging in her mouth (very gross and kind of scary to see...trust us on this one) strode into the hospital with her little walk like she owns the place.  Her "fight" makes me crazy sometimes when she is kicking in anger or agitation about something small but it is that "fight" that keeps her resilient despite the circumstances.  Praise the Lord that we found a water fountain and my little girl who is refusing a lot of liquids, drank and drank because 1. It was fun.  2.  She got to push the button.  3.  It was something new.   Tomorrow a man is coming to our home to install a water fountain for this season.

Our surgeon confirmed what we had seen and that the palate had come apart on a side and in the front. Here is the amazing part.  It should, by the shear mechanism of her tongue, be put in place over the next days and heal and seal on it's own.  I remember when Cory was in medical school and that he would comment that he didn't understand how anyone could doubt God's existence when you look inside the inner workings and intricacies of the human body.  That this dangling palate has the capability and possibility to heal itself is nothing short of miraculous.  I am still trying to figure out how they made her one in the first place!  So we hope.  We hope for the miraculous but hope more in the God of hope who is filling us with all joy and peace as we trust in Him, so that we may overflow with hope.  Would you join us in hoping like that?  If you know my Jesus, would you ask Him to be who He already is and seal and raise her palate into place?

I was reading a devotional tonight to my children and it spoke of hope.  That if you belong to Jesus, there are 3 things you can hope in.
1.  God will turn even the bad things around for your good in the end.
2.  Your good things can't ever be taken away from you.
3.  The best things are yet to come.

So, we are hoping for healing.  Knowing that no matter what, we have Jesus.  Knowing that if I'm to write someday about all of the rare and crazy things that can happen with cleft palate surgery, at least it will have hope.  And maybe some humor too.
I did have a different but very good Mother's Day.  Today I didn't want gifts.  Just time with each child.  I had been at the hospital all week and missed them.  I took Grace for a walk in the stroller around the neighborhood, thankful that she was instructing me on which wildflowers she wanted in her hands along the way.  I "did school" (his choice!) with William and we colored and read and did patterns and it was so sweet.  I took a walk this evening with Carter who filled my ears with fourth grade fun and questions and retelling of tales.  Tomorrow I am planning to steal away my oldest daughter for lunch (she is street smart and knows that by waiting an extra day, she gets a sweet deal!).  I did get a gift and homemade cards, and duct tape vases and grocery list holders and even an original song with dance moves to end the night.  I was also asked in all seriousness today from one of my children who shall remain nameless, if I could "teach them how to hold their pooters in."  A good skill to have but not one I really know how to teach.  I mean, I have a Masters Degree in Mom but that one threw me and almost caused their aunt to fall out of her chair.
I loved this Mother's Day.  I would have written it differently but I still loved it.  I don't have the pretty picture going to church with kids all clean and dressed today.   They dressed themselves and the clean is questionable and their mom looks exhausted and graying hair that needs colored and a new normal of four children with one with a special need and surgery and therapy and this. is. what. makes. being. a. mother. really. special.  Grateful in the mess.  Joy in the sorrow.  A new memory for this holiday that has some meat on it's bones.  Some depth.  Happy Mothers Day.