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.
Welcome to our world - one recently turned upside down by the birth of our first child Owen. Here we will chronicle tiny glimpses of our day to day life as new parents - smidges and smudges of the thing we call life. This could get interesting.
Wednesday, January 12, 2011
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.
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.
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.
Friday, December 31, 2010
2010 - What I've Learned
So I absolutely LOVE New Years - it's probably my favorite holiday. To me New Year's has always had this romance to it, being able to shed off the mistakes and heartbreaks of the previous year and look forward with excitement and optimism of the year ahead. I love the end of the year countdowns whether its the top songs of the year or the biggest celebrity blunders of the year. I LOVE remembering what was and hoping for what will be.
This year New Years feels all different though and the things I'm recalling are much bigger and more meaningful than ever before. I suppose you could say that's all part of growing up but I think more than anything its a reflection of where I am spiritually in my life and how my faith and belief in God have really shaped this year for me and my family.
First of all, I think of all the incredible blessings we've had this year and all the heartache and in each blessing I can see heartbreak and in each heartbreak I can find the blessings. I probably lost you huh?
This year was especially hard for us, but it was by far the most rewarding year of my life. I experienced the greatest joy I've ever known and also the most piercing grief. I lost friends and found new ones. I witnessed miracles and experienced great suffering. I saw life come into the world and held a hand as it slipped away to heaven. I watched my husband stand strong in the face of adversity and be a safe place for me to fall at the end of many days spent wondering what the doctors would say next. I experienced faith like never before.
This year I learned that I am stronger than I ever knew anyone could be but I am only strong because I walk in faith that God is in control of my life, without him I am nothing, but with him I can face the impossible and persevere. I saw the tiniest little man I've ever met face great obstacles, baffle doctors, and fight for every single breath he takes. I am so proud to be Owen's mother and I anticipate with great excitement all that God has in store for his life.
This year I took on the toughest and most rewarding role of my life, being Owen's mother and as I make my resolutions the top of my list is to be the best mom I can possibly be to my little man. Becoming a mommy was the best thing that has ever happened in my life.
This year I watched as my angel on Earth, my granny departed from this life and entered into her eternal life. She was the sweetest (albeit the feistiest) little old lady in the world. She loved me and all of the rest of us SO much. She taught me kindness, and generosity, and how much a little girl could get away with when her parents weren't around. I loved her so much and I pray that Owen will know and love her through the legacy she left with all of us. Losing her was one of the hardest things I've been through in my life, but I got to hold her hand as she slipped away into the presence of the Lord. I think about this year and I think I've never been closer to heaven than in that moment or in the moment Owen came rushing into this world. How precious. How remarkable. How lucky am I to have felt so close to heaven?
I've spoken about it before but the worst day of my life was on September 13, 2010 when Owen was just a week old, and I didn't think he would survive the day. I don't think I will ever forget just how bad that day was or how hard it was to see him like that but God was with us and our faith was strong. I overcame my fear of witnessing to people this year. I'm not sure why I ever had a problem with it but I did. Me, an award winning public speaker, actually was afraid to talk about something, but until this year I always shied away from witnessing to people, even though I knew it was something I was supposed to do as a Christian. I just wasn't comfortable with it, but Owen has helped me overcome that.
Owen is without a doubt the greatest blessing of my life. I don't know what I did to deserve to get to be his mom but it is an honor and I am so proud to call him my son. But as I said before no blessing came to us without heartache. We have cried and worried and faced impossible situations but we have overcome them all - Praise God. Owen has given me strength I didn't know I had and I know with God, and Ed at our sides we can face anything.
Those who know our story know that Owen is an absolute miracle, when he was born his apgar score was a 1 and anyone who knows what an apgar score is knows that that is the worse it can be. When he was a week old his lactic acid levels were a 9 and a doctor told me "only a baby could have survived that." Another doctor said he had 0% chance of making it without us as his parents, but all I could think was Thank God we believed in a higher power because it wasn't us it was God. There's no doubt I witnessed multiple miracles in Owen alone but I was blessed to see many more in other children and families this year and I believe that everyday holds the possibility for miracles. I think that's how I will go into the New Year, knowing that God can do anything and miracles really do happen. Knowing that with every heartache we can be blessed beyond measure, believing that what you put out into this universe inevitably comes back to you, trying my hardest to take on life with this new positive attitude I've found through my son. I have high expectations for 2011 but only because I've seen how incredibly wonderful life can be (even in the midst of great turmoil), and I know that God will bless us when we least expect it in the most miraculous ways.
Tonight I pray for Owen as always, and I pray for Ed and I to find comfort and strength along the way. I pray for our family and for every single person who has prayed for Owen. I pray for the life that God has planned for Owen and the journey that we are on. I believe that even though this year has been so amazing (and I truly mean that) that next year will be even more incredible and that blessings will reign down on my son. I think if you put yourself in the right frame of mind as you think back on what was and what will be you can see that even the worst really wasn't so bad. I will miss my Granny for the rest of my life but I was so blessed to have 30 full years with her.
At the end of the day, at the end of the year I look back with great joy on the year that was, I feel extremely blessed and thankful for the experiences and I can't wait to see how those experiences shape the person I am and the things that will come in the new year.
Happy New Years everyone! Be blessed.
This year New Years feels all different though and the things I'm recalling are much bigger and more meaningful than ever before. I suppose you could say that's all part of growing up but I think more than anything its a reflection of where I am spiritually in my life and how my faith and belief in God have really shaped this year for me and my family.
First of all, I think of all the incredible blessings we've had this year and all the heartache and in each blessing I can see heartbreak and in each heartbreak I can find the blessings. I probably lost you huh?
This year was especially hard for us, but it was by far the most rewarding year of my life. I experienced the greatest joy I've ever known and also the most piercing grief. I lost friends and found new ones. I witnessed miracles and experienced great suffering. I saw life come into the world and held a hand as it slipped away to heaven. I watched my husband stand strong in the face of adversity and be a safe place for me to fall at the end of many days spent wondering what the doctors would say next. I experienced faith like never before.
This year I learned that I am stronger than I ever knew anyone could be but I am only strong because I walk in faith that God is in control of my life, without him I am nothing, but with him I can face the impossible and persevere. I saw the tiniest little man I've ever met face great obstacles, baffle doctors, and fight for every single breath he takes. I am so proud to be Owen's mother and I anticipate with great excitement all that God has in store for his life.
This year I took on the toughest and most rewarding role of my life, being Owen's mother and as I make my resolutions the top of my list is to be the best mom I can possibly be to my little man. Becoming a mommy was the best thing that has ever happened in my life.
This year I watched as my angel on Earth, my granny departed from this life and entered into her eternal life. She was the sweetest (albeit the feistiest) little old lady in the world. She loved me and all of the rest of us SO much. She taught me kindness, and generosity, and how much a little girl could get away with when her parents weren't around. I loved her so much and I pray that Owen will know and love her through the legacy she left with all of us. Losing her was one of the hardest things I've been through in my life, but I got to hold her hand as she slipped away into the presence of the Lord. I think about this year and I think I've never been closer to heaven than in that moment or in the moment Owen came rushing into this world. How precious. How remarkable. How lucky am I to have felt so close to heaven?
I've spoken about it before but the worst day of my life was on September 13, 2010 when Owen was just a week old, and I didn't think he would survive the day. I don't think I will ever forget just how bad that day was or how hard it was to see him like that but God was with us and our faith was strong. I overcame my fear of witnessing to people this year. I'm not sure why I ever had a problem with it but I did. Me, an award winning public speaker, actually was afraid to talk about something, but until this year I always shied away from witnessing to people, even though I knew it was something I was supposed to do as a Christian. I just wasn't comfortable with it, but Owen has helped me overcome that.
Owen is without a doubt the greatest blessing of my life. I don't know what I did to deserve to get to be his mom but it is an honor and I am so proud to call him my son. But as I said before no blessing came to us without heartache. We have cried and worried and faced impossible situations but we have overcome them all - Praise God. Owen has given me strength I didn't know I had and I know with God, and Ed at our sides we can face anything.
Those who know our story know that Owen is an absolute miracle, when he was born his apgar score was a 1 and anyone who knows what an apgar score is knows that that is the worse it can be. When he was a week old his lactic acid levels were a 9 and a doctor told me "only a baby could have survived that." Another doctor said he had 0% chance of making it without us as his parents, but all I could think was Thank God we believed in a higher power because it wasn't us it was God. There's no doubt I witnessed multiple miracles in Owen alone but I was blessed to see many more in other children and families this year and I believe that everyday holds the possibility for miracles. I think that's how I will go into the New Year, knowing that God can do anything and miracles really do happen. Knowing that with every heartache we can be blessed beyond measure, believing that what you put out into this universe inevitably comes back to you, trying my hardest to take on life with this new positive attitude I've found through my son. I have high expectations for 2011 but only because I've seen how incredibly wonderful life can be (even in the midst of great turmoil), and I know that God will bless us when we least expect it in the most miraculous ways.
Tonight I pray for Owen as always, and I pray for Ed and I to find comfort and strength along the way. I pray for our family and for every single person who has prayed for Owen. I pray for the life that God has planned for Owen and the journey that we are on. I believe that even though this year has been so amazing (and I truly mean that) that next year will be even more incredible and that blessings will reign down on my son. I think if you put yourself in the right frame of mind as you think back on what was and what will be you can see that even the worst really wasn't so bad. I will miss my Granny for the rest of my life but I was so blessed to have 30 full years with her.
At the end of the day, at the end of the year I look back with great joy on the year that was, I feel extremely blessed and thankful for the experiences and I can't wait to see how those experiences shape the person I am and the things that will come in the new year.
Happy New Years everyone! Be blessed.
Sunday, December 26, 2010
Owen's First Christmas 2010
I'm posting this simply to say that this was the best Christmas of our lives. Our little "gift" from God was home with us and although he wasn't feeling wonderful we were able to start traditions and enjoy spending time with our entire family on Owen's First Christmas. He received many gifts, mostly from other people (we figured we'll have to go overboard next year so we'd slide by this year). Ed, Owen, and I had the best day together and while it ended up turning into a second day as we took him to the hospital and got no sleep we got all we wanted in being able to have Owen home for Christmas. Yes, we are now back at Shands and there is no telling how long we will be here this time but our wish for a wonderful 1st Christmas together was granted. I will post pictures for this blog once we get back home again.
Saturday, December 18, 2010
Angels Unaware
As we were driving home with Owen yesterday an idea for a blog post popped into my head. I remembered a scripture that says, "Careful lest ye be entertaining angels unaware." Hebrews 13:2.
So I'm thinking about what to say and how to say it then I notice a billboard and it says "Hear God's Word and Do as it says." I was like wow okay. Then the very next song that came on the radio was Alabama's "Angels Among Us." So here we go.
I know that our faith alone is what has gotten us to where we are right now with Owen and I praise God for that. I also praise God for sending us angels to comfort us on our journey.
Now I don't know what you believe but I believe in two kinds of angels, the kind we can see and the kind we can't. Most people know that while I was pregnant with my son I lost one of my angels on Earth, my Granny Polly. She had the biggest heart of anyone I've known. She was a bright spirit with so much love to give anyone who was around to accept it. She was so excited about Owen, I'm thankful that she never knew his diagnosis because it would have made her heart so heavy. But I'm equally thankful that she was a nurse because I know through all this she was with us, with Owen, and more importantly with Owen's medical staff. I'm certain that she had some say in some of the nurses we were blessed to have with us. That's the power of believing in something bigger than this world, you know that God can put all things into play to work out for your benefit.
I get a lot of people telling me that I've been so positive, that I'm an inspiration, and so on, but I don't feel like I've done anything. All I did was put my faith in God and it allowed me to stay positive throughout all of this. There was nothing I could do and I can promise you that you get out of this world what you give it, I'd like good things to come to my son so I've tried extra hard to only think of the good.
God blessed us with many angels, some he loaned us from heaven but so many he placed here on Earth for us. Our doctors and nurses were some of the best ever, while they were extrememly good at what they do they also had a very human side to them they were compassionate and caring, they were approachable, they were amazing. We had many angels in our nursing staff but three very special ladies who would become just as much friends to us as they were nurses. With Laura we could always tell exactly what she was thinking by the expression on her face. If there was cause for disappointment we knew it when Owen had done something awesome and was making progress we knew that too. She was a great advocate for our son and made sure I was too and she became a great friend to us. I don't know how I would have gotten through all of this without Laura to turn to for so much advice. Tracie was another one of our nurse angels, she was our tell ya like it is angel and we thank her for that now. Tracie was Owen's nurse the day of his very first embolization, the one where the doctor said "Oh he did great yall should be able to go home in a couple of weeks." Tracie shot him a look like you have lost your mind before she even realized what she'd done. Well we saw it and my mom confronted her about it. Tracie told us like it was and from that day forward she was never shy about telling us what we were really looking at with Owen and things that we should be very cautious of. Tracie prepared us for so much of what we were facing and even going home some of her final words are what guide my decisions with Owen day in and day out. And finally there was Jen. She reminded us of a friend back home and she talks faster than I do. She was a nurse but she had also been in our shoes having had one of her children in the NICU. She saw things from our perspective and helped us (me especially) deal with feelings that I couldn't explain. I know beyond a shadow of a doubt that God put these three ladies in our lives for a reason and I am thankful.
We were blessed with other families who became extensions of our own family, Becca and her parents who were there day in and day out. Richard and Grace who were told to abort their precious angel Hailey. I would jokingly call Richard my husbands boyfriend because they became such fast friends but they were who we needed when we needed them and I'd like to think we were the same for them.
Mrs. Judy Angley is an angel on Earth if there ever was one. She was "the March of Dimes" lady and provided a creative outlet for families as well as free pizza once a week, but more than that she had giving heart and was always available to really listen to anything, whether it was a problem with the hospital staff, parking, or just getting to know you by sharing personal experiences.
Everyday our nurses would change, if we were lucky we might get one nurse for two or three days in a row, but everyday like clockwork the clerk staff stayed the same. In a time where everything was always changing it was great to know that from 3-11 during the week we would have our angels Ashley and Lori there to buzz us in and out of the NICU. Over time they became our friends, real friends. Every night as we'd leave we'd spend a little time with them and we came to expect big huge laughs while we were with them. In a place where the laughter and smiles were few and far between they truly were angels in helping us deal with everything we were going through. We made some really great Shands memories with those two crazy girls. And on our second visit instead of us going to them they came to where we were to check on us and spend time with Owen.
It's amazing how God uses people and places them in your life for a specific reason. There was Lindsey Wheeler, who when we finally talked face-to-face said, "we've met a few times through friends and you were always so nice to me." She made sure I was able to get my post-natal check-up done while Owen was in surgery so I wouldn't be sitting in a waiting room when he got out. There was Cassie Goodson with the Pentacostals of Gainesville who always managed to show up when we needed renewal and encouragement the most. Their church had prayer meetings 3 or 4 times a week and Owen was constantly lifted up in those meetings. And our cousin Linda & her husband Brian, who provided my parents with a place to stay every time they came down to be with us.
And our greatest swarm of angels were the people back home. The constant encouragement from our pastor, friends, family, co-workers, and church family back home. The phone calls, the text messages, the facebook posts, we knew that Owen was in everyone's thoughts and prayers and that gave us the most comfort of all. The anonymous donations, the love offerings, the fundraisers that friends and family put together for us, the amazing support that we felt from OUR community while we were all the way in Gainesville. The steady stream of visitors who came to check on us all of these things meant more to me than anything ever has in my life. Ed and I are beyond grateful. Everyday we are thankful for all of the people in our lives and all the many blessings that we so undeservingly received.
This post isn't meant as a thank you note (though I am thankful & I guess it is in a way) - but it's meant more as an acknowledgement of the fact that God provided us with these angels while we were far from home. I cannot possibly name every single person who impacted our lives these past few months but I do know them all by name and I will never forget the things that you all have done for us. And I thank you from the bottom of my heart and hope no one feels neglected in this blog. I simply wanted to express how God puts people in your life at just the right moment for just the right thing. I know some of our angels will be life-long friends and some we may never see again, but nonetheless you all were there and we appreciate all of you.
So I'm thinking about what to say and how to say it then I notice a billboard and it says "Hear God's Word and Do as it says." I was like wow okay. Then the very next song that came on the radio was Alabama's "Angels Among Us." So here we go.
I know that our faith alone is what has gotten us to where we are right now with Owen and I praise God for that. I also praise God for sending us angels to comfort us on our journey.
Now I don't know what you believe but I believe in two kinds of angels, the kind we can see and the kind we can't. Most people know that while I was pregnant with my son I lost one of my angels on Earth, my Granny Polly. She had the biggest heart of anyone I've known. She was a bright spirit with so much love to give anyone who was around to accept it. She was so excited about Owen, I'm thankful that she never knew his diagnosis because it would have made her heart so heavy. But I'm equally thankful that she was a nurse because I know through all this she was with us, with Owen, and more importantly with Owen's medical staff. I'm certain that she had some say in some of the nurses we were blessed to have with us. That's the power of believing in something bigger than this world, you know that God can put all things into play to work out for your benefit.
I get a lot of people telling me that I've been so positive, that I'm an inspiration, and so on, but I don't feel like I've done anything. All I did was put my faith in God and it allowed me to stay positive throughout all of this. There was nothing I could do and I can promise you that you get out of this world what you give it, I'd like good things to come to my son so I've tried extra hard to only think of the good.
God blessed us with many angels, some he loaned us from heaven but so many he placed here on Earth for us. Our doctors and nurses were some of the best ever, while they were extrememly good at what they do they also had a very human side to them they were compassionate and caring, they were approachable, they were amazing. We had many angels in our nursing staff but three very special ladies who would become just as much friends to us as they were nurses. With Laura we could always tell exactly what she was thinking by the expression on her face. If there was cause for disappointment we knew it when Owen had done something awesome and was making progress we knew that too. She was a great advocate for our son and made sure I was too and she became a great friend to us. I don't know how I would have gotten through all of this without Laura to turn to for so much advice. Tracie was another one of our nurse angels, she was our tell ya like it is angel and we thank her for that now. Tracie was Owen's nurse the day of his very first embolization, the one where the doctor said "Oh he did great yall should be able to go home in a couple of weeks." Tracie shot him a look like you have lost your mind before she even realized what she'd done. Well we saw it and my mom confronted her about it. Tracie told us like it was and from that day forward she was never shy about telling us what we were really looking at with Owen and things that we should be very cautious of. Tracie prepared us for so much of what we were facing and even going home some of her final words are what guide my decisions with Owen day in and day out. And finally there was Jen. She reminded us of a friend back home and she talks faster than I do. She was a nurse but she had also been in our shoes having had one of her children in the NICU. She saw things from our perspective and helped us (me especially) deal with feelings that I couldn't explain. I know beyond a shadow of a doubt that God put these three ladies in our lives for a reason and I am thankful.
We were blessed with other families who became extensions of our own family, Becca and her parents who were there day in and day out. Richard and Grace who were told to abort their precious angel Hailey. I would jokingly call Richard my husbands boyfriend because they became such fast friends but they were who we needed when we needed them and I'd like to think we were the same for them.
Mrs. Judy Angley is an angel on Earth if there ever was one. She was "the March of Dimes" lady and provided a creative outlet for families as well as free pizza once a week, but more than that she had giving heart and was always available to really listen to anything, whether it was a problem with the hospital staff, parking, or just getting to know you by sharing personal experiences.
Everyday our nurses would change, if we were lucky we might get one nurse for two or three days in a row, but everyday like clockwork the clerk staff stayed the same. In a time where everything was always changing it was great to know that from 3-11 during the week we would have our angels Ashley and Lori there to buzz us in and out of the NICU. Over time they became our friends, real friends. Every night as we'd leave we'd spend a little time with them and we came to expect big huge laughs while we were with them. In a place where the laughter and smiles were few and far between they truly were angels in helping us deal with everything we were going through. We made some really great Shands memories with those two crazy girls. And on our second visit instead of us going to them they came to where we were to check on us and spend time with Owen.
It's amazing how God uses people and places them in your life for a specific reason. There was Lindsey Wheeler, who when we finally talked face-to-face said, "we've met a few times through friends and you were always so nice to me." She made sure I was able to get my post-natal check-up done while Owen was in surgery so I wouldn't be sitting in a waiting room when he got out. There was Cassie Goodson with the Pentacostals of Gainesville who always managed to show up when we needed renewal and encouragement the most. Their church had prayer meetings 3 or 4 times a week and Owen was constantly lifted up in those meetings. And our cousin Linda & her husband Brian, who provided my parents with a place to stay every time they came down to be with us.
And our greatest swarm of angels were the people back home. The constant encouragement from our pastor, friends, family, co-workers, and church family back home. The phone calls, the text messages, the facebook posts, we knew that Owen was in everyone's thoughts and prayers and that gave us the most comfort of all. The anonymous donations, the love offerings, the fundraisers that friends and family put together for us, the amazing support that we felt from OUR community while we were all the way in Gainesville. The steady stream of visitors who came to check on us all of these things meant more to me than anything ever has in my life. Ed and I are beyond grateful. Everyday we are thankful for all of the people in our lives and all the many blessings that we so undeservingly received.
This post isn't meant as a thank you note (though I am thankful & I guess it is in a way) - but it's meant more as an acknowledgement of the fact that God provided us with these angels while we were far from home. I cannot possibly name every single person who impacted our lives these past few months but I do know them all by name and I will never forget the things that you all have done for us. And I thank you from the bottom of my heart and hope no one feels neglected in this blog. I simply wanted to express how God puts people in your life at just the right moment for just the right thing. I know some of our angels will be life-long friends and some we may never see again, but nonetheless you all were there and we appreciate all of you.
Thursday, December 16, 2010
Chunky Man is Eating Again
They started letting Owen eat again late last night. He started with a little pedialite around 11 and then at 3 am he had his first bottle. They told us he would probably start eating again slowly but he took a whopping 4 ozs - the same as he was taking before we had to come back to Gainesville.
The nurse said he wanted more but they wanted to wait before giving him more. At his 7 am feed he took 3 ozs. So I'm pretty sure he's ready to go back to being himself. Praise God. No news on how much longer we will be here or what the plan is for now. They are still monitoring him on the EEG recording brain waves to see if he's having anymore subclinial seizures. He's now on 3 medications to prevent seizures instead of just one that he was on before we had to come back. I will update more when I know more. Thanks for your continued prayers.
The nurse said he wanted more but they wanted to wait before giving him more. At his 7 am feed he took 3 ozs. So I'm pretty sure he's ready to go back to being himself. Praise God. No news on how much longer we will be here or what the plan is for now. They are still monitoring him on the EEG recording brain waves to see if he's having anymore subclinial seizures. He's now on 3 medications to prevent seizures instead of just one that he was on before we had to come back. I will update more when I know more. Thanks for your continued prayers.
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