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!
Tuesday, February 16, 2010
Thursday, February 11, 2010
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.
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.
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