Well we are a little more than a week past Abby's surgery.  It wasn't perfect, but almost nothing is.  She was sick, we were tired.

When really intense situations begin to come to an end, you finally realize that you are tired; that's how I know that things are improving for me.  It's still intense and we are watching carefully, but I am exhausted.  That is a good thing.  I have spent the last nine days in response mode.  Running on adrenaline and making decisions, projections, mistakes.  When I can finally process that I am really, really tired, I am coming back.

I may have said before that I have tunnel vision.  It completely takes over in times like these.  I can't even think of what's going on outside of that hospital room beyond making sure the kids are where they need to be and have the proper rides, sitters, etc.  Whether or not they've done their homework, had dinner, need a bedtime story doesn't come anywhere near my consciousness.  Neither does feeling anything other than what is in the exact moment I'm in.

Nine days doesn't sound long to me.  A nine day vacation would fly by.  Nine days leading up to her surgery felt like a minute.  Nine days before Christmas can be cause for complete and utter panic.  Nine days waiting and watching for some sign that the child I bring home from the hospital will be the same child mentally and physically she was before is an eternity.  That's 216 hours, 12,960 minutes of wondering if our lives would ever be the same.

Her little body went through so much.  She has a 3 1/2 inch incision on her abdomen below her right rib cage and a 2 1/2 inch incision over her spine.  She has a pump sitting inside of  her abdomen that looks and feels like a hockey puck, which also bruised.  She has extensive bruising from her right hip to almost her left hip.  When I say extensive, I mean that I have never before seen such deep purple bruising in my life.  To say I was unprepared is an understatement.  She has bruises from attempts at IVs when she was dehydrated.  They finally found one in her foot.  Bruising from the IV infiltrating in her arm and leaking potassium into her tissue.  Redness on her body and sores on her ears from laying in the bed.  She vomited until she could barely lift her head.  I'm sure that just scratching the surface of what my girl has been through.

I am at that place where I can say all of that and still say I think I would have made the same decision again.  I am waiting for feeling like the results of the pump are worth everything Abby went through.  How strange it is to worry she won't be the same when the entire purpose of this surgery was to help her be different.  She really isn't the same child, I think she's better.  I haven't put a bib on her all day today unless she was eating.  All day!  I haven't been able to do that--maybe ever?  She slobbers.  She can't help it, but it's not that cute.  She's not slobbering nearly as much.  Her shirt isn't getting wet.  That's amazing to me.  She's more relaxed, but not floppy (that could change).  She's still kicking an playing.  She is using her hands so well!  They are open (they used to be fisted all the time), she's swiping with them, grabbing things.  I love it.  She still has CP of course, but it's a little better CP.  I'll take it!

I want to talk about how present God has been through all of this and where he is when we can't even see where we are.  I can't wait to tell you how AMAZING our God is, but I don't want it to be a paragraph at the end of a surgical description, even thought he is definitely and maybe most importantly here at the end of a surgical description.  He really showed himself to me and I felt peace. 

This is from last week, so I'll update soon :)

Baclofen pump

We have decided to have a baclofen pump inserted into Abby's abdomen.  It will continuously pump medication into her spinal fluid to help reduce the spasticity.  It just sounds horrible. 

It is overwhelming being charged with the life of another person.  I have to make decisions that can help her or kill her.  She will be in pain and I made the decision for that to happen.  I know that I am doing it for all the right reasons, but at the end of the day all the right reasons in the world won't make my child not hurt. 

I have prayed and researched and spoken to other children with device.  It seems like the most difficult thing is getting the dose right.  It takes quite a bit of tweaking to deliver enough of the medication to help her without over-medicating her. 

Her surgery is tomorrow.  I hate that I am still going back and forth with this decision.  I've already postponed it once.  I felt good about it and now I feel worried.  I want to help her, but what if this doesn't help her?  My head tells me all of the research, doctors and parents I've spoken to are right, this is good for her.  My mommy heart says don't put her through anything else.  Don't ask this of this child. 

If it were me, it would be so easy.  If I thought the procedure was right for my own body I would do it and easily accept all of the risks of complications and the inevitable pain any surgery brings.  But it's not me and I am not accepting the risks and pain.  I am saying it is okay for my daughter to take it on.  I am risking her life and well being.  I wish I could take it from her.  I have to bear witness to her pain, and not take it as my own.  I have to step aside to not allow all of my own heartbreak and worry to take from her experience.

I wish she didn't have cerebral palsy.  I wish I didn't even know what this pump was, but I do.  It won't fix anything that is wrong with her.  We are hoping it will bring her some comfort.  Our prayer is that her body will not be so contorted because her muscles pull at it.  It should help to relax some of that tone.  The risks are infection, pump malformation, overdose,withdrawal, tubes breaking and leaking, coma and death.  Am I crazy?  Are these my options?

Honestly, yes.  They are my options.  This is when faith is either real or not.  Do I really believe that NO MATTER WHAT God loves and has my daughter in his hands.  I'm not talking about when everything turns out well, but when I'm not sure.  I am walking in the dark and trusting that even if the worst happens He is caring for us in ways that I may never be able to see. 

I believe that nothing we will ever go through on this earth is greater than the resurrecting power of Christ.  There is no situation that is greater than his power to heal or transform.  Paul says in 1 cor. 15:26 The last enemy to be destroyed is death,  and Jesus already overcame the grave.  Then Paul ends with: Therefore Dear Brothers and sisters, stand firm, let nothing move you.  To me that means that my faith has to be the same today as it is tomorrow, whatever tomorrow brings.  Even Jesus knowing what he would face cried: take this cup of pain, let is pass from me, but if through pain I must obey your will, I will go further still.  Facing such suffering and death was breaking his heart, but his desire was to obey so that God's greater plan for you and me could be realized. 

So all I can do now, and all I should ever do is follow his example and go to God in prayer.

Father God, my source and my strength, take my sweet child into your arms.  Love her, protect her and above all let your will be done in her life and in mine.  Use this medication to help and not harm her, take her pain, use her life that you would be seen in her.  Use me, that I will not have believed in vain, that my faith will be even greater as I watch you work in this situation.  May the eyes of those around us see your good works and your hands as they hold us.  In Jesus name!

Tunnel Vision

I am driving myself crazy.  I wish it was a longer drive.

Today I'm thinking that my problem is I'm just not a multi-tasker. I wish I was.   Everyone thinks I am because I have so many responsibilities.  I want to be able to have several things going at once and be really good at all of them.  But sadly, instead, I have a horrible case of tunnel vision. 

Oh how lovely it would be if I were a June Cleaver wife and mom.  I would keep the house company ready at all times and the laundry would always be done (which by the way, I completely understand women who go to the grocery store in their bathrobes--one day I will do this just so I don't have to wash clothes).  I would sit everyday and write about all of wonderful things God has done for me.  I would run marathons and my jeans would never be too tight.  I wouldn't even own that secret pair of "fat jeans" I keep stashed in my closet because I would be thin all the time.  I would spend time in the word everyday and live my life as close to Christ-like as possible.  Ya, that would be me....

If I wasn't tired just writing about it.  I can do one thing at a time.  It is annoying.  I can run consistently and everything else falls in line after that.  I can write 3-4 times a week- every week, but then the secret jeans gain a place at the front of the closet.  I can keep up with the house and the kids and do nothing else.  I can be a great bible study girl and read and pray everyday, well, you get it. 

I want to do it all.  I try to pray while I'm running, but I end up wondering how much radiation is leaking out of the power lines.  I come home to cool down and straighten up quickly so I can write a while before grocery store runs, or errands or time with friends and church.  I usually get distracted somewhere in the house and have one incredibly clean room, the rest not so much.  By the time I get back around to that room again the vicious cycle has restarted.  I write when I can, but I have about 17 draft blogs that I don't love or just never finished.  Did you notice yet that my bible time keeps coming at the end of my lists? 

I'm sitting here wishing I could multi-task when what I need to do is prioritize.  I need to move my list around so that my day begins with prayer and bible time; then move on from there.  He desires to show me how to live in a way that honors him and all I need to do.  I have to learn to consistently flip that list of mine around.

Maybe tunnel vision wouldn't be so bad if I tunneled it in the right place.  If I focused on him and what he wants from me, instead of my own crazy schedule and busyness.  Most of my testimony comes from learning to surrender my plans for his and here I am in the day to day moments of my life wishing I could re-order it. 

Most of us will react well in the big moments when we're standing in the spotlight.  It's the everyday that really defines us.  The moments when we acknowledge our true selves and own our choices.  That's why I drive myself crazy.  In the times when I look at all of the moments that add up to days and eventually a life, I want to feel like I've accomplished something .  I want to open myself to what God's plans are for me. 

So, what do I do with all of this?  Wanting to say "Yes Lord!"  when he calls, but feeling completely inadequate because I haven't sat at my computer and finished one little blog, a giant pile of unfinished laundry is giving me a mean look, and an infinite list of what I didn't even start is running through my head?

I stop. 

That's it.  I remind myself that those thoughts are not from God.  He didn't create that spirit in me.  I move the bottom of my list up to the top.  I go to his word to hear his voice and then I write, run, clean, parent, cook, plan and whatever else pops up.  I'm thankful that as I've gotten older I recognize who it is that brings me back and stops me from going completely off the deep end, but one day I pray it will be my only thought.  To look to him and listen.

We read Psalm 71 in my bible study this morning.  It was written by an older man looking back at his life and praising God.  We talked about how we look back at our own lives and what we see.  Someone saw restoration; all of the places God had healed, changed and renewed.  I love that word: Restored.  I could write all night about that one word.  But I won't.  I'll be thankful that I did bible study today, cleaned a little, wrote a little, spent time with my girls, and I'm going to wrap up and watch some TV with my guy, then tomorrow I will wake up and try to tunnel my vision vertically. 

She will only see the baby

The first time I stepped into the Neonatal Intensive Care Unit I was bombarded with sound.  Sound from everywhere!  Monitors going off, ventilators breathing for babies, nurses and doctors talking and moving.  And tears.  Not crying, just silent terrified tears.  I am amazed that silence can sometimes be the loudest sound in the room.  My first day I looked into the eyes of another mother standing beside the plastic box that held her baby.  Her silent tears held every one of those sounds.  Her child would die 7 months later, having only left the hospital to die at home.  Her tears are still the sound in my heart when I remember.

Then the light. The babies actually had to improve enough to go into an isolette.  They stayed on the open table until they were stable enough for the little boxes, then, they covered their isolettes with blankets to block some of the light.  Can you imagine growing in lights and sounds when you should have been warm and dark in your momma?  I felt assaulted by everything going on.  So much information, such tiny babies, such real fear. 

I also felt so sorry that my girls had to live that way.  I felt guilty that I couldn't do better for them.  I hated that my body didn't hold them and I ached because my arms couldn't hold them.  They had to go through it alone.  I wanted to somehow take it for them, but I couldn't.  I watched as they were stuck, poked, scanned, medicated, breathed for, and felt helpless.  I willed them to live and would have done anything to make that happen.  It was a selfish desire to want that at any cost, because it cost them everything. 

There is a weight in that unit.  So many parents and babies, afraid and sick.  There is an unspoken terror of death.  Losing a child is so unnatural.  There is no way to prepare for it.  It felt completely wrong, like a sin to even think of the possibility, but it was always there with us.  Every night we would leave the hospital to sleep and dread that middle of the night call saying something was wrong.  We began to look for the parents and babies in the morning to see who was still there.

The social worker asked us early on about bringing Hannah to see the girls.  I couldn't imagine it.  I felt so overwhelmed in there, I thought it would terrify Hannah to see her sisters that way.  The social worker told us not to worry and then said something I will never forget: "Trust me, she will only see the babies.  Children don't see the tubes and wires, they see the baby because they are looking for a baby." 

Hannah walked into the nursery and saw the baby.  She had no expectations of perfect.  She had no idea that every baby wasn't born that way.  She hadn't dreamed them and felt them move inside of her.  She didn't know the feeling of overwhelming sorrow for all they were going through.  She could walk in and be genuinely excited because she was a big sister.  Children are amazing.  I wanted that childlike heart too.  I wanted to see my babies, just them.  It was hard for me to do that, but a few times I think I did.  This is a picture of Emily the first time I saw her whole face.  She had been extubated (breathing tube removed) for just a few minutes and I snapped a quick picture. 

I guess the point isn't seeing them when the tubes are removed, but being able to see past all of that.  Being able to look at that mess of tangled wires and sounds forcing life into them and seeing a child.  A real living breathing human with a future and filled with potential and love.  I wonder if God looks down at me like that.  Does he see the tubes and tangles I make in life?  Does he look at me and see my mistakes and insecurities; the artificial things I reach for to force life into myself?  I know he deals with that mess I am, but I also believe he looks past all of that and sees his child.

As I was writing this today, I could feel God asking "You know I see you, but how do you see me?  Do you see me as complicated and confusing?  Do you wonder about my answers and my care?"

Wow.  Can I look past all of the sorrow of the world, the insecurities in myself, the necessity of provision and see his face?  Do I see everything that complicates that relationship with him, or I can I come to him with a childlike innocence; without expectation and the weight of loss and regret and see a king who created me?  His arms ache to hold me, just as I ached to hold my girls.  To comfort as I desired to comfort.  That and immeasurably more.  Can you trust me Andrea?  Can you allow me to work in you that which is pleasing to me?   Can you trust your girls to me? 

That is the desire of my heart.  To trust him completely.  To walk with Jesus daily, to fill with his word.  Looking at that new terrified mommy up there gently touching her sick baby, I can't believe the person he has molded today.  Faith is a choice I have to make every single day, it is a verb--an action that requires moving forward when I want to stand still.  Most of all, it is reaching up and taking his hand, or some days crawling into his lap and allowing the Prince of Peace, the Living Water to fill in the holes of a sometimes very painful life.