Rare

"No, we've never seen this happen before....we're not sure what to do...it just doesn't happen with these cases.....it is rare."

Not the words you want to hear as a parent, sitting in a sterile office, watching your sweet child's every move..staring at a wound and incisions that just won't heal.  In fact, they are infected and it is rare that it happens.  But it happened.

Sweet Grace, despite what looked to be a successful surgery, is battling an infection in her repair that is ripping the incisions and pulling and tugging her beautiful new lip and space between her upper lip and nose.  Nothing has gone right so far, except that her lip is pretty amazing and lovely.  But, her nose collapsed and pinched nostrils much more that the team hoped for and her labored breathing during sleep is something that they have never seen before and now this.  At dinner last night, we thought she turned wrong in her highchair and nicked her incision.  There was gushing blood on the kitchen floor and Cory and I panicked.  We could see what was a deep hole, right above her lip.  It is unlikely the high chair did it, but that the infection was slowly breaking down that part of her repair and it just came undone and split open.  This post is not for the weak of stomach or heart, I'm sorry!  So, her incision has just oozed infection all day and we make daily trips to the hospital to monitor it.

"It is rare."  The Lord has reminded me today of another season that we walked (or limped through) where a rare disease literally ate my left knee and down into my shin and no one could figure it out.  For years.  A slow death of bone on an otherwise healthy mom.  Someday I'll write about it because several have asked me to do so, but the important part tonight is that it was rare.  Unexpected.  Hard to explain.  The calling card of the enemy, because it about took me out in every way, but what the Lord did in the working of good...His calling card...well, it was life changing and it is much better on the other side.  A deposit was made that would not have been had it not happened.  When you can't walk and lose control, and come out on the other side hand in hand with the Lord, control doesn't seem to be an issue anymore.  And it really hasn't been.  It pops up now and then, but overall it got cut out with a blade just like my buttery knee bone was sliced and removed.  The story looks a little different though with a child.  My child.  If I was in control, it wouldn't look this way.  Like any parent, you don't wish bad on yourself, but you would trade places if you could.

But today and this week, we know that the Lord will allow this and use it for many reasons beyond our grasp.  But there is one that resonates currently with both Cory and I.  There is a refinement for us to behold.  To be and to hold.  Thanksgiving despite circumstances, rejoicing in all trials and situations, abiding peace when fear threatens to take over.  Trust in the only ONE worth trusting.  No, we haven't arrived there yet and have failed miserably on several occasions this week, but we are closer to that shore than we've ever been before.  It is OK to grieve with a good Father.  And, we are.  No parent wants to see their child suffer.  We pray that the infection stops and exits, that there is no worse damage that needs further procedures and that her repair does not break down anymore.  We pray she doesn't have to go through any more trauma than necessary.  We grieve that it happened.  What?!  God, aren't we supposed to have some heavenly free pass?  We adopted, we got her, we moved heaven and earth.  She is special needs as it is..doesn't that exempt us somehow?  Shouldn't all surgeries be smooth?  Hasn't she earned that right?

I came home from the hospital today around lunch time and saw the news where the leader of North Korea sent America some sort of twisted hallmark card.  I didn't watch it but felt the Lord saying, "What that leader just sent to America, is what infection looks like.  The same kind that is threatening to tear down your baby's incisions, wants to seep in and bring fear and hate and destruction to the world.  That is never my work.   Aren't you glad you have me?  Aren't you glad I am Master of you and Grace?  Don't you wish he had me?  (insert picture of North Korean leader) Wouldn't things look different?

What is happening this week is rare.  I don't fully understand it or what the outcome or ramifications are going to be.  I do know this with all my heart.  We serve a rare God.  The only one from any study that I've done that conquered death and took our place so we could be near His perfect Holiness.  So we could look like our Father, get to Him and be sons and daughters.  Not because of anything we did or do or didn't do.  All because of what He did.  He sets the table for us and invites us there.  That is rare.  The rarest thing of all.  If I chose too, I can set this week up next to that and know that it is going to be OK.  That His great love for us is enough.

Our sweet Grace, despite current events, is still her beautiful self...waving at everyone in the hospital and placing stickers on my behind as I answered phone calls today, as if to say, "I am really over all of the hooplah about my face... can we just get into some things that we shouldn't be?"  After Grace went to sleep tonight (here's hoping for night #2 of good sleep thanks to prayer and breathe right strips!) we had a talk with our big kids, letting them share their thoughts and questions and honest little hearts about this whole situation.  They love her and are worried and think the scar is really gross with what looks like snot pouring out and wish she wouldn't cry so much but she is worth it.  We prayed and apologized for the places where we didn't do it as well as we could have this week and everyone went off to bed.  And Cory and I spoke about the weights we carry that aren't ours to hold in this.  As a surgeon, Cory's burden is heavy.  What he knows and how he watches Grace's care is indicative to him.  Terribly hard.  The burdens that I carry (and didn't even know were there until a dear friend showed up at my house to pray with me today) are the pressure to walk this out well. To meet all four children's needs in pinterest/sally clarkson/mrs. cleaver fashion and do it smiling and impeccably groomed.  What was rare was me driving down the interstate in my pajama pants this morning to pass Grace to Cory because her wound was opening worse and seeping.  Even more rare was me showing up to the hospital without a stitch of makeup or hair combed and deciding to keep it that way all day.  I have discovered that this produces results!  If I look like this, it must be bad! :)

Those aren't my burdens to carry...the pressure and guilt if not suffering perfectly...they are false and not from the Lord.  The condemnation is not from Him either.  Sometime in the last few weeks, I was standing at the kitchen sink and telling the Lord who felt near and close, that "I am a bad mom today."  His response was quick.  "Yes, but you are a bad mom today but you love me.  And, I love you more than you love yourself and I love your children more than you do.  And with that, you are going to be just fine."  And I laughed in relief.  His mercy is new.  It is rare that the creator of the Universe would want to commune like that.  I know of no other god who can do that.  Be that immense and that huge and speak so personally.  So, I trust Him in this, despite not knowing the outcome.  He is worthy to be trusted and worthy to be praised in the midst.

I have thought about Superman today too.  I have stared at those incisions on Grace like I had laser beams that could come out of my eyes.  Watching for infection to spread, for pieces to fall apart or disconnect.  I wish I had the laser beam eyes...just fix everything with a glance.  If I concentrate really hard, it could just heal!  I know Jesus can do that.  I'm asking Him to do so.  I don't know of anyone who has that gifting...laser beam healing eyes...but if you do, I would like to have it right now!   You can come and pray that gifting for me as we could use it! :)  And, I would totally be in with the 4 year old superhero crowd.

My favorite thing that Grace and I did today was meticulously stack and count duplos and place them in a plastic bin.  We did this over and over...I think she is like her mom in that it was a soothing and therapeutic thing to see success that easily and order in what has felt chaotic.  She is learning to count and we placed them quietly and carefully in the bin.  But here was the fun part.  The biblical part I believe.  Once the duplos were in, I shook the bin like a crazy woman and we both screamed in shock and delight as they flew all over the room.  Then we picked them up and did it over and over again.  I saw and heard her cackle with glee...something we had not heard in a while.  A big smile creeping over her tight and infected mouth.  Giggle upon giggle.  Joy in the trial.  Rejoicing in the suffering.
I want to camp there no matter what tomorrow holds.  I don't want it to be rare to land there.  I want it to be rare not to.

Please pray for our amazing Grace.  Thank you for the calls and emails and texts and surprise meatloaf and playdates.  And thanks for the prayers...we know the One who hears them.  And He is always good.

Grace's Lip Repair and other new things

First, a disclaimer.  My last post was indeed my "favorite things."  Not, "this is how things always look at my home" post or "every moment of Christmas looks like this."  I had so many nice phone calls and emails and comments that I just wanted to be very clear.  On a blog, you can put your favorite things if you want.  This is not how it always plays out.  I was about to be invited to speak at a Homeschool Convention because those pictures and posts and poems look so organized!  (Not really.  That is a shout out to my homeschool mom friends.  Even on my favorite things post, I have not arrived to your level! :)  )  So, to keep it real, please know that there were Christmas time outs for the older three and a couple "time ins" for the newest addition, AND I am pretty sure that Cory threatened to cancel Christmas at least once.  It is another holiday tradition that I look forward to.  The annual threat of demolishing Christmas.  And just for good measure, here is a picture of NOT one of my favorite things.

Four children are no joke.  Neither is the laundry they produce.  If you can't find me, I've been swallowed up by the black hole of never-ending laundry.

So, some new things in the new year that are fun...

Everything is better with a visit from Palpa!  The new year brought a much anticipated visit from Cory's Dad which was so much fun!

Palpa's visit also prompted Will to take off his training wheels and burn rubber on a new bike.   Palpa and Will went and picked it out.  He learned fast and is breaking hearts left and right on his "Blue Thunder."

There are so many captions I could pick for this picture, but I'm going to go with, "Duke.  Represent.  Or get off my driveway."

Just beautiful.  This is how Grace looked before surgery.  There is a nasoalveolar molding that Grace wore in her mouth, covering her teeth where her palette should be.  It also went into her nostrils to help prepare her for the lip repair.  It moved gum lines and teeth center, while keeping the nose from collapsing.  She wore this for 6 weeks, along with the taping, that stretched her skin around her lip and nose area so that the repair could be made with plenty of skin to use.  No one thought she would keep all of this in, but she did.  It really worked and really helped her outcome.

This is Grace a day or two before surgery without the tape on.

If you have to wear all this stuff on your face, you can definitely look stylish doing so.    She is so girly and loves bows and shoes and makeup (stealing her mom's makeup and attempting to put it on and rub it in the carpet).

If you're going to have surgery, a first trip to Krispy Kreme is a good way to celebrate.   Grace gave it 2 glazed thumbs up!

Up close shot.  We are constantly amazed at how willingly she let us pull out the retainer and tape and clean it and reapply every night with more tape and surgical glue.  Never moved or tried to take it off.  Sweet girl.

Way too early and just a bit giggly on the morning of surgery.

This is Grace the morning of her lip repair surgery.  We had to wake up at 4 am so she was a little tired, but so very sweet.  She let us cuddle her and sing to her.  I will never know if she knew what was going to happen, but she was very clearly ours and so loving.  It was such a wonderful gift.

She looked very cute in the Looney Tunes pjs and started to act a little looney tunes when they brought her a nice "cocktail" right before they took her from us.  We are thankful that she won't remember that part.

After surgery that evening.  Grace and Mom prepare to settle in for the night.

Look at that happy face.  Traumatized by every doctor or staff who walked in our recovery room EXCEPT when her brothers and sister showed up.  She squealed in delight!!  She was jabbering away and pointing to all the cool buttons on her space age crib.  They sang songs for her and Cory and I stood back and watched with thanksgiving.  We are family.  

Four days home.  Outside with big brother William getting some fresh air.

So, Grace's first surgery went very well.  Her recovery has been rough in that she is having trouble sleeping due to some "fight or flight" old habits coming back from the experience of all of this surgery and doctors and strangeness and getting used to a new way of breathing while asleep.  Grace, Cory and I have averaged 3 hours of sleep each night this week as Grace easily wakes up uncomfortable and with a temporary sleep apnea response to a new nose and lip.  We don't think she is in much pain anymore, but likely sore and stiff.  I will post more up close "before and after" shots in the next post, but am too tired to line them up the way I want and the man with the answers is sound asleep on the couch.  So, those can wait a few days more!  We are trying to document each day with a picture (thanks Amanda!) so we can see the progress, which I will share soon!  She should feel much better in a week or two and the dramatic difference in her lip and nose will be noticeable in a couple of months, although we are pretty amazed already.  Plastic surgery is such a phenomenal common grace, especially for little children.  That Grace can already say new sounds and blow bubbles and have a sucking reflex that we hope to try with a straw soon is just such a gift.
Honestly, we miss that sweet little cleft lip face that we fell in love with...we all have adjusted to a new look on this girl we love and it took some getting used to.  I know it sounds weird, but we loved her as she was.  And, we love her now as we are starting to see glimpses of our Grace come back as the swelling goes down and a little smile starts to try and creep in, despite a very sore lip.  Tonight she was dancing and giggling and her little exhausted eyes lit up like we know and love.



Before I close this out tonight...
Two last pictures....
Right before Grace's surgery, Claire and Cory had a date to the movies.
1.  The only man that will be kissing Claire in the movies for quite some time.
2.  The only man that she will be kissing for quite some time.  In the movies.  Out of the movies.
3.  Super cute pics and so glad my daughters have a Dad like this.