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.

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.