Three doctor’s appointments kept us busy yesterday. Two fairly routine, a regular check in with my OB here in town which keeps us from having to go up to the city every two weeks, and the other my ninth ultrasound in the past six months of my let to double check and make sure the asymmetrical swollen preggers feet wasn’t something more nefarious than my poor posture or baby putting the pressure on my left leg.
The third, an appointment with a geneticist and brain malformation specialist at university hospital. It was not an appointment we were looking forward to. Though not a meeting filled with good news, it was a meeting filled with compassion. The doctor shared with us that he and his wife lost a baby at birth. He reviewed the MRI images and clearly articulated and showed us what lead him to his conclusion, comparing our son’s brain images with that of a normal child. Between David’s biology major and my recent trainings at work regarding trauma and the brain we were able to follow what he said pretty well. I can’t promise I will be able to explain it so great.
He noted that though the images were blurry he can still see enough to identify what he believes to be an accurate diagnosis. It is a very rare disorder called Aprosencephaly. He noted that we could look it up but there is very little research regarding this condition because it is so rare. Gideon’s brain does not have important structures that are vital in the correct formation of the brain. Ventricles are fluid filled spaces in the brain where the fluid that protects and bathes the brain is made. They also create the pressure to push the rest of the brain structures and form correctly during brain development. A genetic goof has very early on prevented Gideon’s brain from forming. The microcephaly is secondary, it is a result of the abnormalities in the brain.
The only good news from this unexpected pre-natal diagnosis is that is very unlikely to be a recessive trait disorder. Our chances of having healthy, normal babies in the future are as good as anyone out there.
At this point in time his brain stem appears to be functional. The brain stem regulates the very basic life functions, breathing, and heart rate. That stuff.
This has several implications. There are several possibilities when Gideon is born should God’s decision for his life not be one of miraculous healing. One possible outcome is that he will be born and with in minutes not be able to breath. That he will be able to breath on his own but over the next few hours or days develop apnea as his underdeveloped brain is unable to provide the information the body needs to function. That he could come home from the hospital with us and live from a few months to nearly a year before his brain simply cannot provide the information his body needs to survive and he will die either from an apnea (trouble regulation breathing) or not be able to swallow and regulate basis bodily functions. This doctor predicts that it is very, very unlikely that Gideon will see his first birthday.
And so we face some very difficult decisions. Fortunately the doctor informed us that legally we don’t have to worry about allowing the Lord to take Gideon home by not instituting extreme medical procedures. But morally and ethically what to do is a lot grayer. The miracle of modern medicine doesn’t come with a handy instruction manual when it should and should not be used. How will we know if we should let him go or fight for him with all that medicine can offer. As the doctor said, we can keep anything alive but we are left with the question, is it right, is it humane, is it God’s will and desire that we should do so?
David could not have said it better. “I don’t want to get in the way of God doing a miracle, but I don’t want to try to do it for him either” so I will carry Gideon to term. For two more months he will be safe in my body, I will provide for him and protect him while I can. But when he arrives will I be able to make the best decision for him or will I be seduced by my selfishness and hold on when I should let go, or let go when I should hold on?
We can only pray and hope that those are decisions we will not have to make. That God’s power will be revealed in that delivery room though healing. Though we know that is power will be revealed through his grace and peace no mater what the outcome.
As David and I make these difficult decisions we covet your prayers. There are many who will have strong opinions about the decision we make. Please understand that David and I will make decisions about the intensity of medical interventions we will utilize through a great deal of prayer and hoping and believing that these are back up decisions because of the wonders God can show us in the end. Ultimately we will be obedient to God and trust that our support team will join us in prayer with us and continue to offer compassion and love as we face these trials.
Thank you for being a part of this journey with us. It’s not over yet, and we will not see this news as final. We will continue to trust in God for all he has for us. And as Angie Smith, wife of Selah singer Todd Smith reminded in her blog, my prayer is most of all that God will bring those things into my life that will make the soil rich for his love to grow. That I will not simply pray for sunshine but for what will make my life a place where God and be glorified. Even if that is rain. Thank you Amanda for helping me find Angie’s blog and for sharing your story with me. To know that I am not alone offers immeasurable comfort during what is so far the darkest time I can recall in my life. Thank you all for helping me to believe the light at the end of the tunnel is not a train after all.
Wednesday, September 1, 2010
Monday, August 30, 2010
spring
Thoughts 3/9/10
It smells like spring it sounds like spring and I have broken out the flip flops. I am not a person who really dislikes winter. In fact, I really like winter. I don’t mind bundling up and I love the smell of the snow and making show angels. I love white Christmases and drinking hot cocoa after winter walks. But I love spring too. Rolling down the car windows and putting the heavy coat in the closet. I love opening all the doors and windows in the house and breathing in the earthy spring air while the house seems to sigh like you just took off its girdle.
I couldn’t help but think on my way to work as I contemplated how what seems like just a few moments ago I was thinking about how peaceful the world rested underneath its blanket of snow, that winter is a lot like being pregnant. The earth is waiting to give birth again. Winter can have its swollen feet and achy back moments but overall it is still wonderful. It’s a promise, just like being pregnant is a promise. All the uncomfortable stuff is so easy to tolerate because at the end you get to hold a new creation, an incarnation of love. A baby all soft and smelly.
For me, that promise feels so veiled right now. I believe that God is going to do something…I just need lots of help with my unbelief some days. I think sometimes it is harder for me that David in this regard. Though I want so much to have faith that can move mountains, I am so easily pulled into feeling like this winter has been a waste. I cling to the promise that nothing, when handed over to God, is wasted. I watch my feet get puffier, my belly get bigger and my bathroom breaks get more frequent, and I am haunted by doubt. So each day contain deliberate efforts to put my faith in what I know is the truth. As our friend Dan said Sunday, doctors know facts but they don’t know the truth. All that effort is sometimes really exhausting. I wish could take a vacation from this whole think and come back in a week, refreshed and ready to fight the good fight. But folks that’s just not the way it works.
“Lord help me put my faith in truth and not in facts because today I am tempted so to despair. Change my heart to be a heart that is near to yours, because the nearer I am too you, the more I can trust in your love. Forgive me for trusting facts more than you. I believe Lord you can, and you will do miraculous things in the life of my family.”
It smells like spring it sounds like spring and I have broken out the flip flops. I am not a person who really dislikes winter. In fact, I really like winter. I don’t mind bundling up and I love the smell of the snow and making show angels. I love white Christmases and drinking hot cocoa after winter walks. But I love spring too. Rolling down the car windows and putting the heavy coat in the closet. I love opening all the doors and windows in the house and breathing in the earthy spring air while the house seems to sigh like you just took off its girdle.
I couldn’t help but think on my way to work as I contemplated how what seems like just a few moments ago I was thinking about how peaceful the world rested underneath its blanket of snow, that winter is a lot like being pregnant. The earth is waiting to give birth again. Winter can have its swollen feet and achy back moments but overall it is still wonderful. It’s a promise, just like being pregnant is a promise. All the uncomfortable stuff is so easy to tolerate because at the end you get to hold a new creation, an incarnation of love. A baby all soft and smelly.
For me, that promise feels so veiled right now. I believe that God is going to do something…I just need lots of help with my unbelief some days. I think sometimes it is harder for me that David in this regard. Though I want so much to have faith that can move mountains, I am so easily pulled into feeling like this winter has been a waste. I cling to the promise that nothing, when handed over to God, is wasted. I watch my feet get puffier, my belly get bigger and my bathroom breaks get more frequent, and I am haunted by doubt. So each day contain deliberate efforts to put my faith in what I know is the truth. As our friend Dan said Sunday, doctors know facts but they don’t know the truth. All that effort is sometimes really exhausting. I wish could take a vacation from this whole think and come back in a week, refreshed and ready to fight the good fight. But folks that’s just not the way it works.
“Lord help me put my faith in truth and not in facts because today I am tempted so to despair. Change my heart to be a heart that is near to yours, because the nearer I am too you, the more I can trust in your love. Forgive me for trusting facts more than you. I believe Lord you can, and you will do miraculous things in the life of my family.”
Sunday, August 29, 2010
ready for more bad news
Update 3/8/10
Phew…David and I met with our genetics counselor, had a follow up ultrasound and met with our doctor today. We got the results from the micro array and it was normal. What that means is that so far as they can tell, they have no idea what is causing the issues. These results still don’t rule out a recessive trait disorder but don’t rule it in either. The counselor gave us a preview of what the doctor will tell us on Friday. The doctor we are seeing on Friday is a geneticist and a specialist on brain abnormalities. His view of the MRI noted that the ventricles and the midline structures are concerning. They cannot visualize either. She told us that this is a very rare case and it makes it hard to predict any kind of prognosis but the doctor will likely tell us Gideon’s chances of survival outside of the womb and even inside the womb are very small.
The doctors and university hospital had a panel discussion regarding our case last week. Our Doctor talked to us some about this and what it means for our labor and delivery. Lots of questions were raised about the value of using fetal monitoring. Are we willing to make future pregnancies high risk to save a baby whose chances of surviving are so small?
Our doctor really won us over today. I respected her frankness and her concern about my body and the future of my health and our family. She was open about our choices and dint' try to talk us into or out of anything.
We were blessed to have been prepared in some ways for the news of today. We have to send huge thank yous to the Hansen family. First to pastor Andy who reminded us that this time will never be wasted time. If we turn our brokenness over to the Lord he will not let it come back empty. And thank you to Pete who did not hesitate to share what God had pressed upon his heart to tell me. “trust in the Lord with all your heart and lean not onto your own understanding” a proverb that when broken down in my life right now means as Pete reminded me to trust God more than I trust the doctors and my understanding our situation. David and I both found ourselves again in 1st john. Specifically the first chapter that reminds us that greater is He that is in us that is in the world.
Phew…David and I met with our genetics counselor, had a follow up ultrasound and met with our doctor today. We got the results from the micro array and it was normal. What that means is that so far as they can tell, they have no idea what is causing the issues. These results still don’t rule out a recessive trait disorder but don’t rule it in either. The counselor gave us a preview of what the doctor will tell us on Friday. The doctor we are seeing on Friday is a geneticist and a specialist on brain abnormalities. His view of the MRI noted that the ventricles and the midline structures are concerning. They cannot visualize either. She told us that this is a very rare case and it makes it hard to predict any kind of prognosis but the doctor will likely tell us Gideon’s chances of survival outside of the womb and even inside the womb are very small.
The doctors and university hospital had a panel discussion regarding our case last week. Our Doctor talked to us some about this and what it means for our labor and delivery. Lots of questions were raised about the value of using fetal monitoring. Are we willing to make future pregnancies high risk to save a baby whose chances of surviving are so small?
Our doctor really won us over today. I respected her frankness and her concern about my body and the future of my health and our family. She was open about our choices and dint' try to talk us into or out of anything.
We were blessed to have been prepared in some ways for the news of today. We have to send huge thank yous to the Hansen family. First to pastor Andy who reminded us that this time will never be wasted time. If we turn our brokenness over to the Lord he will not let it come back empty. And thank you to Pete who did not hesitate to share what God had pressed upon his heart to tell me. “trust in the Lord with all your heart and lean not onto your own understanding” a proverb that when broken down in my life right now means as Pete reminded me to trust God more than I trust the doctors and my understanding our situation. David and I both found ourselves again in 1st john. Specifically the first chapter that reminds us that greater is He that is in us that is in the world.
Saturday, August 28, 2010
the story of a dinky kid
Thoughts 2.27.10
I re-read judges last night. Gideon was the dinkiest kid in the dinkiest tribe called to lead and army outnumbered by some 10,000 midianties. What does God do? First he sends like 20,000 guys home. And as if being outnumbered 3 to 1 isn’t bad enough he dismisses more of Gideon’s army. His reason? So that no one will be able to dismiss that it was His power that lead the Israelites to victory. So I pray, God, prepare our hearts for victory we cannot imagine.
I won’t lie and say I am honkey dorey on this one. I’ve cried more tears in the past few days then I have in a long time. Bad news always seems to knock me on my rear. I grieve and experience hopelessness and sadness that is palpable. But I have learned God does not do good things for me because of who I am but because of who He is and who He is does not waiver. Thank you my dear friend Sara of reminding me that none of us deserve miracles but God will fill our lives with them because of who He is, not what we’ve done.
I re-read judges last night. Gideon was the dinkiest kid in the dinkiest tribe called to lead and army outnumbered by some 10,000 midianties. What does God do? First he sends like 20,000 guys home. And as if being outnumbered 3 to 1 isn’t bad enough he dismisses more of Gideon’s army. His reason? So that no one will be able to dismiss that it was His power that lead the Israelites to victory. So I pray, God, prepare our hearts for victory we cannot imagine.
I won’t lie and say I am honkey dorey on this one. I’ve cried more tears in the past few days then I have in a long time. Bad news always seems to knock me on my rear. I grieve and experience hopelessness and sadness that is palpable. But I have learned God does not do good things for me because of who I am but because of who He is and who He is does not waiver. Thank you my dear friend Sara of reminding me that none of us deserve miracles but God will fill our lives with them because of who He is, not what we’ve done.
Friday, August 27, 2010
off the cuff exegesis
Update 2.26.10
Gideon had and echocardiogram today. His heart looks good. The pediatric cardiologist said he couldn’t find anything major wrong and that he has no recommendations. It was nice to have good news for once. It was a wonderful three hours.
Our genetic counselor called later that day as we were driving home. I had a feeling when she suggested we pull over it wasn’t going to be good. She requested a specialist to look at the MRI. Whenever she uses the words “very concerning” it’s just not good. The specialist is going to meet with us on March 12 at 12:30 pm. Small blessings, a Friday my day off. She wanted us not to get blindsided when we went to see him. She said that his prognosis is likely to be worse than the initial prognosis given to us in January. Worse? Seriously how could it get worse? She said that specialist noted that the brain structures are not where they are supposed to be and the specialist predicts we may have serious problems even early on in Gideon’s life.
Only a few days earlier David and I read the same passage from 1st John. He requested for me to read out loud when I did my reading and gave an interested humph when I finished he confessed he had just read that same passage. Here it is.
1 John 4
1Dear friends, do not believe every spirit, but test the spirits to see whether they are from God, because many false prophets have gone out into the world. 2This is how you can recognize the Spirit of God: Every spirit that acknowledges that Jesus Christ has come in the flesh is from God, 3but every spirit that does not acknowledge Jesus is not from God. This is the spirit of the antichrist, which you have heard is coming and even now is already in the world.
4You, dear children, are from God and have overcome them, because the one who is in you is greater than the one who is in the world. 5They are from the world and therefore speak from the viewpoint of the world, and the world listens to them. 6We are from God, and whoever knows God listens to us; but whoever is not from God does not listen to us. This is how we recognize the Spirit of truth and the spirit of falsehood.
Though we are still not sure what God was trying to tell us, the verse that stood out to us is verse four. Greater is the one who is in you than the one who is in the world. I hope I am not taking this out of context on my off the cuff exegesis here, but it is a reminder that however accurate the doctors diagnosis is, greater is God, who is right there with Gideon this moment in my womb that any thing that is in the world.
Though to some it may seem naive, I will continue to cling to my hope that God will make Gideon exactly who he is supposed to be. He will prepares us and give us everything we need to be exactly the parents we need to be if we will turn to Him and trust His work in our lives instead of the words of a world who does not know Him.
Gideon had and echocardiogram today. His heart looks good. The pediatric cardiologist said he couldn’t find anything major wrong and that he has no recommendations. It was nice to have good news for once. It was a wonderful three hours.
Our genetic counselor called later that day as we were driving home. I had a feeling when she suggested we pull over it wasn’t going to be good. She requested a specialist to look at the MRI. Whenever she uses the words “very concerning” it’s just not good. The specialist is going to meet with us on March 12 at 12:30 pm. Small blessings, a Friday my day off. She wanted us not to get blindsided when we went to see him. She said that his prognosis is likely to be worse than the initial prognosis given to us in January. Worse? Seriously how could it get worse? She said that specialist noted that the brain structures are not where they are supposed to be and the specialist predicts we may have serious problems even early on in Gideon’s life.
Only a few days earlier David and I read the same passage from 1st John. He requested for me to read out loud when I did my reading and gave an interested humph when I finished he confessed he had just read that same passage. Here it is.
1 John 4
1Dear friends, do not believe every spirit, but test the spirits to see whether they are from God, because many false prophets have gone out into the world. 2This is how you can recognize the Spirit of God: Every spirit that acknowledges that Jesus Christ has come in the flesh is from God, 3but every spirit that does not acknowledge Jesus is not from God. This is the spirit of the antichrist, which you have heard is coming and even now is already in the world.
4You, dear children, are from God and have overcome them, because the one who is in you is greater than the one who is in the world. 5They are from the world and therefore speak from the viewpoint of the world, and the world listens to them. 6We are from God, and whoever knows God listens to us; but whoever is not from God does not listen to us. This is how we recognize the Spirit of truth and the spirit of falsehood.
Though we are still not sure what God was trying to tell us, the verse that stood out to us is verse four. Greater is the one who is in you than the one who is in the world. I hope I am not taking this out of context on my off the cuff exegesis here, but it is a reminder that however accurate the doctors diagnosis is, greater is God, who is right there with Gideon this moment in my womb that any thing that is in the world.
Though to some it may seem naive, I will continue to cling to my hope that God will make Gideon exactly who he is supposed to be. He will prepares us and give us everything we need to be exactly the parents we need to be if we will turn to Him and trust His work in our lives instead of the words of a world who does not know Him.
2.15.10
Romans 8:27-29 says “And we know that in all things God works for the good of those who love him, who have been called according to his purpose.”
This is a verse that I am really clinging to today. We continue to believe and pray that God can heal Gideon. That he will be whole and sound physically and mentally. What I have been grappling a lot with lately is will God heal Gideon. I know that God’s love for David, Gideon and I is profound and limitless and that He longs to do great things for His children. I know that He is more than able to heal, right down to the chromosomes. I have also been given a vision for Gideon’s life. That he will do great things for the Lord.
But what if the way that Gideon ministers to others is not through his healing but through how we deal with his not being healed? What if God’s plan for Gideon isn’t that is wonders are shown through healing, but through his comfort, peace, hope and joy in his people who have no logical reason to have peace and joy? The great comfort to me here is that even if God chooses not to heal Gideon, even if he is profoundly mentally retarded, God will supply all of our needs according to His glorious riches. And through this the world will know God is love, that He truly is the greatest comforter. At the same time, only through my families and my pain will this later witness be accomplished. And the selfish streak in me really thinks that sucks. I don’t want to be a martyr. I don’t want to have to set an example of how to love the Lord even when things are tough because that means things have to be tough, and this is a tough as it has ever been and it might get worse from here.
And I remember that nothing I will suffer, no pain I will have to endure compares to Christ’s suffering on the cross. When God could have chosen to end Christ’s suffering he remained silent. And when my selfish streak rears its ugly head this is what I must cling to. It is because of that suffering that I can cling to the hope that my God is the great comforter. That he fully understands and cares about my pain and desires to draw me closer to him through it all. That though I walk through the valley of shadow (and it has been awful dark these past few weeks) his rod and staff will comfort me.
This is a verse that I am really clinging to today. We continue to believe and pray that God can heal Gideon. That he will be whole and sound physically and mentally. What I have been grappling a lot with lately is will God heal Gideon. I know that God’s love for David, Gideon and I is profound and limitless and that He longs to do great things for His children. I know that He is more than able to heal, right down to the chromosomes. I have also been given a vision for Gideon’s life. That he will do great things for the Lord.
But what if the way that Gideon ministers to others is not through his healing but through how we deal with his not being healed? What if God’s plan for Gideon isn’t that is wonders are shown through healing, but through his comfort, peace, hope and joy in his people who have no logical reason to have peace and joy? The great comfort to me here is that even if God chooses not to heal Gideon, even if he is profoundly mentally retarded, God will supply all of our needs according to His glorious riches. And through this the world will know God is love, that He truly is the greatest comforter. At the same time, only through my families and my pain will this later witness be accomplished. And the selfish streak in me really thinks that sucks. I don’t want to be a martyr. I don’t want to have to set an example of how to love the Lord even when things are tough because that means things have to be tough, and this is a tough as it has ever been and it might get worse from here.
And I remember that nothing I will suffer, no pain I will have to endure compares to Christ’s suffering on the cross. When God could have chosen to end Christ’s suffering he remained silent. And when my selfish streak rears its ugly head this is what I must cling to. It is because of that suffering that I can cling to the hope that my God is the great comforter. That he fully understands and cares about my pain and desires to draw me closer to him through it all. That though I walk through the valley of shadow (and it has been awful dark these past few weeks) his rod and staff will comfort me.
Thursday, August 26, 2010
Thoughts 2.10.10
Thoughts 2.10.10
To say that God will work things out is taking a lot of faith right now. I know that God can do miracles. It’s that God will do something in this situation. It’s a lot easier to believe in miracles in others peoples lives. I don’t sense right not that God s is going to make things all better in this one. I have hope that He will give us strength we need to face whatever comes.
I remember as child telling my mom “I hate you right now”. I remember very clearly knowing that I didn’t’ really hate my mom, that in a little while when I calmed down I loved and trusted my mom to do what was best for me. So I wouldn’t really hate my mom. I just “hated” her then-in that moment. Yesterday I had those moments with God. I just wanted to scream “I hate you, why are you letting this happen. Why do you hate me, what did I do to deserve this?” but like I could never bring myself to say such a final thing to my mom like I hate you (with out the “right now” addendum) I couldn’t bring myself to say I hate you to God.
That’s not to say I didn’t do some, well, yelling at God yesterday. I am still sulking a little today. List night during a very tear filled ride home from work I wanted to do something destructive. The closest I could come up with, save really going bonkers and breaking my dishes, was to carry all the baby stuff upstairs and throw it in the nursery. Out of sight.
And then I sobbed. Susan Lucci for a daytime Emmy sobbed. I don’t want to be pregnant anymore. I don’t want to deal with this anymore. This is never going to end; it’s never going to get better. I’ll never have my own life again. When other moms are going to high school football games and choir concerns, I am going to be changing a 16 year olds diaper. (Remember id did say daytime Emmy here - I wasn’t kidding about the drama queen bit here).
So at the end of my pity party, what do I do now? What do I do when I am done sitting on my ashes? (That is a reference to Job, not a typo, I promise)
To say that God will work things out is taking a lot of faith right now. I know that God can do miracles. It’s that God will do something in this situation. It’s a lot easier to believe in miracles in others peoples lives. I don’t sense right not that God s is going to make things all better in this one. I have hope that He will give us strength we need to face whatever comes.
I remember as child telling my mom “I hate you right now”. I remember very clearly knowing that I didn’t’ really hate my mom, that in a little while when I calmed down I loved and trusted my mom to do what was best for me. So I wouldn’t really hate my mom. I just “hated” her then-in that moment. Yesterday I had those moments with God. I just wanted to scream “I hate you, why are you letting this happen. Why do you hate me, what did I do to deserve this?” but like I could never bring myself to say such a final thing to my mom like I hate you (with out the “right now” addendum) I couldn’t bring myself to say I hate you to God.
That’s not to say I didn’t do some, well, yelling at God yesterday. I am still sulking a little today. List night during a very tear filled ride home from work I wanted to do something destructive. The closest I could come up with, save really going bonkers and breaking my dishes, was to carry all the baby stuff upstairs and throw it in the nursery. Out of sight.
And then I sobbed. Susan Lucci for a daytime Emmy sobbed. I don’t want to be pregnant anymore. I don’t want to deal with this anymore. This is never going to end; it’s never going to get better. I’ll never have my own life again. When other moms are going to high school football games and choir concerns, I am going to be changing a 16 year olds diaper. (Remember id did say daytime Emmy here - I wasn’t kidding about the drama queen bit here).
So at the end of my pity party, what do I do now? What do I do when I am done sitting on my ashes? (That is a reference to Job, not a typo, I promise)
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