Wednesday, January 12, 2011

God's Pawns

First let me preface this post by saying that I'm glad you're reading my blog and it was started as a way not just to tell Owen's story but to share our family experiences.  I have always loved to write but have found that I hadn't been doing it really at all in the past few years.  This blog was a way to bring me back to journaling.  Everything I write comes from my heart and most of what I write is extremely personal.  Thanks for following our blog and I hope that you can gain some insights into your own heart through some of the posts like this one.

God's Pawns

Typically the word pawn carries with it a negative connotation but this morning as I was drawing up medicines for Owen and preparing to give them my mind started turning and that phrase came to mind and really got me thinking.  A day or so after we brought Owen home I was talking with someone and I said, as I've said months ago at the hospital - I believe that my entire life God was preparing me for this exact moment.  Now, there's no way to know when you are strolling through day to day what exactly God is preparing you for or how he will use an experience from 3 years ago to help you tomorrow but that's what God does.  It's like a chess game, and while I would only consider myself a novice at chess I know enough to know that it is a very strategic game and that every move you make is supposed to be a move to set you up for the best outcome.  Now I'm going two places with this.  1) I believe that is what God does for us - he moves us, uses us, & places us in order to set us up for the best possible outcome - maybe not today but in the end. And 2) what if we lived our own lives and made our choices the way God wants us to - in a way that sets us up for the best possible outcome.  I'm not suggesting that we know better than God, but I am suggesting that all to often we know that what we are doing, whether it be the relationship we are in, a friendship taking us down the wrong road, some conviction we can't shake, whatever it may be, we do things knowing that if we wanted the very BEST possible outcome for ourselves we wouldn't do it.  Take for example money, we are all guilty of it, myself included (maybe even especially), we too often sacrifice what we want/need the MOST for what we want/need NOW. Choices.

I don't want to get off-track here so I'll just move on.  What got me thinking about this in the first place (months ago) was remembering something that happened years ago.  About 3 years ago I took a job teaching ESE Pre-K.  I had never really wanted to teach ESE - in fact to be completely honest about it I was initially scared that it would be more than I could handle.  But one day, I remember clear as day, as I was working with my students, and receiving hugs, and helping them understand things in their own way I had a revelation.  It occurred to me in that moment that maybe just maybe God had put me in that position to prepare me for something down the road.  I never could really shake that thought.  When I was told of Owen's diagnosis and as the doctors were finishing procedures and telling us there was no way to know what if any brain damage Owen would have (early in his treatment) I immediately went back to that moment and I knew that God had definitely put me in that place to prepare me for this time in my life. 

On the day we came home under hospice care it occurred to me again, how awesome our God is and how he had been preparing me MY ENTIRE LIFE for this right now.  Ed and I had been looking for a church home since before we got married, we'd visited many different churches when we were able to go (his work schedule prevented us from going together many times on Sundays).  Almost exactly a month before we found out about Owen's condition God sent us to Evangel, now you may not believe that but I know it is true.  We were actually preparing to go to a different church that morning, but we were running late (imagine that), and so I said let's just go to Evangel this morning we can make it there on time, and that was the end of that - no more looking we were home.  We didn't know then how much we needed a church home, we just wanted one, but God knew what was coming and he made sure we were where we needed to be to prepare for what was ahead of us.  On the day we came home under hospice care our pastors were the ones who were so great to drive us home, we walked into the door and the admissions nurse was someone who knew us from church (several of the staff in fact knew us from church - the social worker at the hospital said it was the easiest hospice discharge she had ever worked they were prepared for us).  The social worker at the house was a previous photography client of mine and had become a friend over time.  The man who brought the medical equipment to the house was my good friend's dad (he had known me since middle school).  We were not alone through this because God had moved us over the years in ways that put us right where we needed to be in the middle of a circle of people who genuinely cared about us through what will be the most difficult part of our life.  And that's truly just a small example of how God has put people in our lives, and put us in moments to prepare us for today, and for our future.

I'm sure if you take a good look at your own life you will see how you have been God's pawn and he has put you right where you need to be when you need to be there.  I know that not every day is easy breezy, it's hard to praise God when things are going wrong in your life, but all I can think is PRAISE God for the day they diagnosed Owen, that wasn't a bad day, it was a horrible moment in our lives but it was a GOOD day, God showed us what we shouldn't have been able to see and we knew ahead of time what we were facing.  Every person you encounter good or bad influences your life, changes the fabric of who you are in some tiny way, the way you handle people, react to situations, treat others, they are all choices and I try to live by a quote about choices.  It's a famous quote though few reference the beginning of it and I just don't see how it makes the same sense without it.  William Shakespere wrote, "The choices you make dictate the life you will lead. To thine own self be true."  Life is about choices - today I choose to be a pawn for God for there is victory in Jesus (checkmate).

I don't always have it together.  I won't pretend like I always made the best choices because I know I didn't and those who truly know me know that too.  But everything I have gone through has made me stronger for now.  My greatest fault is probably that I speak too often before I have a chance to think and I used to be very quick to react first and I'm working on that now.  This situation has helped me learn to think before I act as the choices I make today effect not only me but my son and husband as well.  I think all parents should understand (and many do) that every decision you make after you become a parent directly effects someone else.  But that's a whole different blog post right there. 

I was telling my mom last night that I used to think that if I gave my life completely to God that I would miss certain things (I can't even think what that might be now).  I would think, I will have to be good all the time, I won't be able to think bad things, and all these other things I thought being a devout Christian would keep me from but I was so wrong.  Now that I'm here in this place spiritually there is nothing I can't do - there is such a freedom in living for Christ.  I haven't gotten in trouble by anyone, I haven't had to do anything I didn't want to do, there's nothing I've wanted to do that I haven't been able to do - in fact just the opposite - I've had so many more opportunities, so many more blessings in this place than I ever did before.  My life holds more joy even though I'm facing the saddest hardest moments of my life.  We have been extremely blessed every step of the way because we serve an awesome God.  Before now, I couldn't understand the power of God because things of the world had power over me, but now I know that there is nothing God can't do in my life, there is nothing that is more important to me than living for God. I'm not perfect, I will slip, I will get upset, and I may even get angry, but Praise God that my Lord is a forgiving God, he accepts me as I am, he loves me more than I can even comprehend, he washes away my sins, with God who can stand against me?  Yes Lord I will be your pawn, every day of my life.

Lord, I submit to you, use me, move me, place me how you see fit. Lord only you know the future, guide my steps and my heart to lead me where you want me to go. Lord that your will may be done in my life.  Thank you Jesus. Amen.

Tuesday, January 11, 2011

A Big Boy

This warms my heart I hope it does yours too.

My grandpa - Owen's Great-Grandpa is almost 84 years old and on Friday he came by to see Owen as he has a few times this past week.  He was holding Owen and said "He's going to be a big boy."  I said I know Grandpa he is.  He said, "No, he's going to be a big boy."  I said I know.

He then told me a story how he was sitting in his chair at home and dosed off and Owen walked by him and tapped him on his knee and woke him up.  He said Owen woke him up two different times.  I just smiled and thought of what could be and I couldn't help but think so that's where Owen goes when he sleeps.

Staying positive always.

Clinging to the Cross - Our Last Trip to the Hospital

I have to share this short story.  Really its just a few lines.  Owen has taught me faith which I haven't learned in three decades of being in and out of church.  His whole life has been a testimony to God and his strength amazes me.

Our latest trip to the hospital was on Christmas night.  It was the beginning of the end.  Owen's shunt wasn't working properly again, the top piece and the valve were working but the bottom part was clogged causing the fluid to swell around his shunt.  You could visibly see a huge mass protruding around the valve on his head.  Poor baby was screaming in pain and Tylenol wasn't helping any.  We left during Christmas Dinner (around 3 or 4 pm) and took him to Tallahassee Memorial Hospital to the ER.  When he was being admitted the nurse took him into another room to get his weight.  As she was handing him back to me he grabbed ahold of her necklace and wouldn't let go.  At first I was taken back because Owen didn't grab ANYTHING except to wrap his hand around a finger and squeeze.  He didn't grab for toys or pull my hair but here we were in the hospital in a strangers arms and he had her in a tight spot holding onto her necklace.  While I was thinking about what an accomplishment this was for him she was trying to unlatch his fingers from her necklace and I began helping.  It literally took both of us to pull his fingers away from and as we peeled his fingers back I saw what he had such a desperate hold on - it was a crucifix of Jesus Christ on the cross.

What a powerful moment.  God I want to have a hold on you like that because I know that's the hold God has on me.  Right now, through all of this he is holding our family tight and Owen knows him and desires him.  I know not what the future holds but I know who holds the future.

That was going to be the end of this post and I was going to post this separately but I decided to just continue on - I hope you don't mind.

Keep Clinging to the Cross

Owen was in the hospital from Christmas Day until January 4, 2011 this last time from Saturday to Tuesday, a week and a half.   The doctors originally said his shunt was clogged and that he had an infection in the shunt.  They immediately removed his shunt and began treating him with antibiotics.  Everyday I asked about the infection and everyday they said there was nothing growing in his culture - meaning no bacterial infection, maybe a viral infection.  Day after day they said the same thing.  On Thursday the pediatric intensive care unit doctor told us that he was doing great and if he kept this up he'd be in surgery on Monday and home by the middle of the week.  Most of you know that Sunday Owen began having seizures, over 20 in a relatively short period of time and they intubated him and sent him for more tests.  Ed had gone home Sunday morning and been at work in touch with us all day worried. I felt bad that he was working but I was there for Owen.  On Monday morning his neurosurgeon was back from "vacation" he came in first thing and things sounded grim but he told us they would be doing another embolization on Tuesday and then they would go in and replace his shunt.  He said, "I mean for things to sound as bad as they do."  I immediately called Ed and Mom and they came on to Gainesville.  A few minutes later the nurse said the doctor wanted to know when Ed would be here so he could talk to us together - a first.  I knew something was bad wrong.  I told them he'd be there in a couple of hours.  About 30 minutes later as I sat alone by Owen's bed holding his hand the doctor and his nurse practitioner came back and the doctor pulled up a chair beside me.  Without warning the words came, "We can't fix him. . . irreversible brain damage . . . we've done all we can do . . . "  I just remember he sat there looking at me forever and I finally said, "I don't know what you want me to say."   A little later he left.  I cried so hard my face hurt my eyes burned I was so empty.  I held Owen until after Ed & Mom showed up.  I had to tell them the news myself.  The doctors said we didn't have to make any decisions until Tuesday but that we had a few options.  None were good. 

We called the family in and made arrangements for our pastor to baptize him on Tuesday morning.  We would remove the breathing tube that afternoon.  The machine was giving him 20 breaths per minute and he wasn't taking any breaths on his own. They wouldn't wean him off the ventilator as they had always done, typically they'd wean him over a period of 4-24 hours. They didn't expect him to survive the extubation if he did we would just hold him until he passed, that was our understanding.

We braced ourselves for the worse.  Owen did fine off the ventilator.  Within an hour they had hospice lined up.  Our pastors drove us home so we could rest and not worry about the road.  His neurosurgeon said he would die from seizures because the aneurysm would keep causing more and more seizures.  His neurologist says he won't die from seizures it will be something else that kills him.  The neurosurgeon refused to place his shunt back in his brain.  He said we were at a place where we would just be doing things to him not for him.

After coming to peace with everything and beginning to prepare for the end for Owen I had a revelation.  God has been telling me since the VERY FIRST day that I found out about Owen's condition that "it's going to be okay."  Why had I allowed doctors to change that conviction in me.  Right then I remembered a doctor in New York who many people from overseas had used for VOG malformations.  I immediately found his number and called and talked to his nurse.  I had Owen's records overnighted and at first glance he said there was significant brain damage but he wanted to see a few other images from his embolizations. I ordered those and had them overnighted.  I spent all day yesterday and most of this morning making arrangements for second opinions elsewhere.  I had gotten an appointment for Owen at Children's Hospital Boston the number one pediatric neurosurgery center in the country only to find out that Medicaid won't allow him to be treated out of the state because there are pediatric neurosurgeons here in Florida.  And there are a handful of pediatric neurosurgeons in Florida, but only two of those, to my knowledge can treat Owen's condition and one of the two have REFUSED to continue to care for Owen.  I can't even begin to explain how gut-wrenching it is to have a sick child and to have the top center in the country lined up only to be told I'd have to pay out of pocket up front before he could be treated at all.  What do you do?

We just keep clinging to the cross, just like Owen.  Many have asked about the doctor in New York and he did call today.  His recommendation was for us to have another baby.  I don't know how that helps Owen but that was what he recommended.  I've prayed for guidance and I know that God is still directing our steps.  I know what the doctors are saying but I rebuke it in the name of Jesus.  I believe that Owen will live and claim the works of the Lord.  I believe in miracles, it's a miracle that Owen is still alive, he shouldn't have lived past the first few days.  It's a miracle that Owen lived the first month, the second, third and fourth.  It's a miracle that Owen survived the ventilator - as the doctors hadn't intended for him to.  It's a miracle that Owen has been home an entire week now and has had NO swelling and NO seizures.  Regardless of what happens to Owen, God has had his hand on our little man from before he was even born.  Miracles happen everyday.  Every moment I spend with Owen is a miracle in itself.   I keep hearing God whispering everyday "It's going to be okay."  And I don't know if he'll be okay here or if he'll be okay in heaven but I KNOW without a doubt that HE WILL BE OKAY.

Please continue to pray for Owen.  We are asking specifically for God's will, healing, strength, guidance, comfort, & more miracles.  I don't deserve this but Owen certainly does.  Thank you all for your continued support.  We love you more than we can express.