Tuesday, November 29, 2011


I will never cease to be amazed at how God is using our story to influence others. I will always be grateful that He leaves me with a sense of awe at every new lesson I learn. I will also never get used to Him supernaturally helping me. It truly is amazing to see God at work, not just in my own life, but in the lives of people around us.

Last night, Monday, we met with our perinatal hospice group to work on hashing out our birth plan. In order to be prepared for that, Cameron and I spent a while on Sunday talking about what we were looking for out of our birth plan, making some decisions, realizing we needed more information on some things, and just generally working through some things we needed to figure out. I'll be honest and let you know that our talk on Sunday was difficult. It was truly surreal and painful to have to talk about some of those things. I cried a little bit and Cameron made me take a break at one point so we wouldn't get too emotional over it all. I'm glad we were able to do that, though, because I felt more prepared to handle things when we met with our hospice.

I love our hospice group. It takes a real talent to be able to talk to expectant parents about these birth plans in a way that is compassionate and helpful. I almost felt like they made it easier to talk about. They are just amazing. I praise the Lord that we are where we are, and are dealing with the people we are dealing with.

I also had another sonogram today with my specialist. They are also amazing. I don't think I've ever been to a medical practice that is as kind and compassionate as these people. They aren't doomsday-ish or solemn. They do their job and rejoice with you in the small joys you get in a situation like ours. Caroline today had hiccups, and we could see her hiccuping on the sonogram screen. Our ultrasound tech made it almost fun to watch, knowing these are the things parents like us need. Caroline was also being a little stubborn and hiding a bit, making the poor tech work really hard to get good pictures. The tech was so good natured about everything. She worked to get us the pictures we really wanted (we requested certain things), and she was so patient. The doctor that we've been seeing came in a little later, and he also is wonderful. He takes time to listen to us, makes sure he answers our questions, and he doesn't act like he wants out of the room as soon as possible. He makes sure we're taken care of. I just really appreciate that whole office.

This week has been a little nuts with everything going on, but even in the midst of it, God is reminding me that He is at work. I've gotten several emails from total strangers this week, letting me know that they heard about our blog from someone, and they have been touched by our story and how we are handling things. I have complete strangers praying for me, my husband, and my sweet baby girl. How crazy is that? If that isn't proof that God is at work, then I don't know what is. It is such an encouragement to me to hear from people and know that God is moving. (As an aside, I have a contact tab at the top of this blog with my email address on it, in case you or someone you know wants to contact me.)

With all of the appointments, and thinking about a birth plan, and feeling totally drained emotionally and physically from everything going on, I am just amazed that God is so awesome and can still manage to take care of me. It's hard to deal with all of this without breaking down or feeling melancholy or whatever. Even though I feel drained, and I have my moments of melancholy, I feel mostly at peace. I feel uplifted and hopeful. I've been struggling with losing hope this past week. Thinking so much about Caroline's condition makes it hard to see past the circumstance to a God that is big enough to overcome the circumstance. And I'm just tired. It's hard to pray fervently and meaningfully when you're just worn out and have no energy left.

But like I said, even in the midst of all this craziness, I can feel God's presence and peace. I have to confess to Him sometimes that I've lost sight of truth, or that I'm exhausted and not giving Him what He deserves in my prayers, but I also know that He is graciously looking down on me in mercy. I am so grateful that he loves me so much.

If you're one of those people who is supporting me in prayer or otherwise...thank you. If you're one of those who has been impacted by our story, I'm so glad. And I hope that as you continue this journey with us, you will continue to see God at work. I am truly amazed already, so I know I will continue to be.

Sunday, November 27, 2011


So I know I've said many times that I have good days and bad days. Usually more good than bad. Every once in a while, though, I have a day where I just feel...off. Nothing is really any different today than usual, but things are affecting me more than normal today. So I guess today would be considered a "bad" day. Perhaps I should explain.

I see babies and expectant mothers all the time. It always makes my heart ache just a bit, but usually I'm able to put it aside relatively quickly. Some days, like today, it's not so easy. I don't know why sometimes it's worse than others. There's no real reason for it. I deal with the same condition, the same ache, the same difficulty every day. I don't know why some days it just hits me harder.

Today I had to really see an ugly side of myself. I had very unpleasant thoughts several times. Basically, I had to admit to myself that I was jealous of people with "normal" pregnancies and "normal" babies. I had to admit that I wanted to throw a temper tantrum like a two year old and scream and yell that life isn't fair. I had thoughts of, "I hope they realize how lucky/blessed they are." I will never again take a "normal" pregnancy or baby for granted. And I hope no one else does either. But I didn't like seeing that side of myself.

I know there will be days like this. I know it's not abnormal of me to feel this way. But I don't like it. I don't like thinking about the reason I feel that way, either. I just want things to be "normal." I don't like having to admit that there's a reason for me to be jealous. It hurts.

I still believe God can heal her. But I have no way of knowing if He will. I have to prepare for the worst while hoping for the best. Right now I'm kind of in a place where I'm having to think a lot about the worst. We're working on our birth plan with our hospice organization, so we have to make decisions I don't want to make. We're thinking a lot about the medical "certainty," as we prepare for that to happen, in case that is God's will for us. I hope and pray it's not, but it could be, and we need to be ready for that. But having to think about my baby girl in that way is the hardest thing I've ever done. And it makes it hard to think about the positive alternative. It makes it hard to see healthy babies without envy. It makes it hard not to be unhappy with my lot.

The only way I can overcome these emotions and thoughts is by God's grace. I can't do it myself. I just can't. It hurts too much. And there's nothing I can do to change my situation, so I have to rely on the One who can, if He so chooses.

I'm having trouble with that today. I know God is faithful and will see me through today just like He has every day since we got Caroline's diagnosis, 7 weeks and 3 days ago. But it doesn't make today any easier. I have to take my thoughts captive and return them to where they need to go. I need to remember that this world is only temporary, but there is an eternity later. I need to remember that Caroline is a gift, whether for another few months or for a lifetime, and she was never "mine" to begin with. I have to remember that God loves her more than I ever could. I have to remember that He loves me that much too, and only has a good and perfect plan for my life, and Caroline's.

I also have to remember that I'm not alone.

Sometimes when I get into these somber moods, I feel isolated and alone. But I'm not. Even if I was the last person alive on earth, I wouldn't be alone. God is with me through His Holy Spirit. Not only that, but He has also blessed me with amazing friends and family that are willing to pray for me and with me, and to cry with me, and to laugh with me, and to talk with me, and to hug me and support me. I'm never alone. I'm never forgotten. I'm never left to fend for myself. I just have to remember it and realize it.

The best thing is...I know God understands that I hurt. I know He feels all the pain I do. I know He is compassionate and loving. I know He yearns to bear my burdens. I know that He longs to show me something better. I know He seeks to teach me what is truly important, what is truly the best, what is truly satisfying. I cannot find my fulfillment in Caroline, in being a mother. I cannot find fulfillment in being good, in influencing people. I cannot find fulfillment and satisfaction through the support He has graciously provided for me. I have to, I must, find my satisfaction and fulfillment in Christ alone. Everything else is meaningless for eternity. It doesn't mean that God can't use mothers, or use friends, or use me to further His Kingdom here on earth. But if my focus strays too long from the cross, everything else I do or experience loses its power. Mothers and friends and witnessing are all great things, but only if they come after the cross.

My heart still aches to see healthy babies, knowing that it will take a miracle for Caroline to be healthy. I still hurt when I see expectant mothers, see the joy and excitement they have for the upcoming life of their child. It's still painful to live with this diagnosis day in and day out. Today is just one of many days when my defenses are shaken and I have to be rescued by my Savior from the pain and potential bitterness.

I feel a little bit like I have a split personality. One part of me longs for eternity, and one part is caught up in the temporal. One part of me longs for holiness, and one part of me succumbs to my human nature. One part of me is able to look to the cross, and one part of me longs to seek after this world. I can say with absolute certainty that none of my desires for Caroline and our little family are inherently sinful. Wanting to be a mother, wanting to keep my little girl, wanting to have a "normal" childbirth experience...none of that is wrong. But I have to be careful that they don't become my idols, or distractions. I can't seek after motherhood, normalcy, or anything else more than I seek after the Lord. Then, it's wrong.

I will admit that it is HARD. It is very, very hard. Thank God for grace, because otherwise I would fail miserably. My heart breaks to think about Caroline not being healed. My human nature rebels against having a good attitude. My mother-heart longs for normalcy. And everyday, I fight a battle, with God's gracious help, not to succumb. I have a little thing I do that sometimes helps. As I pray, asking God to help me accept His will no matter what, I take my hands, which I form into fists, and then purposefully and consciously open them and hold them out. It is a perfect representation, physically, of how I feel emotionally. It is amazing how hard it is sometimes to open those fists. Even as a symbol of my heart and not a literal act of release, that physical act is sometimes nearly impossible. Sometimes it takes me a while. With God's help and mercy, I always manage to open my fists. Sometimes it is ONLY with His help and mercy.

Today is a closed fist kind of day. I want to hold on to Caroline. I want to say, "Jesus, this isn't FAIR!" I want to take those balled up fists and throw a temper tantrum on the floor. But it doesn't take long for God to gently, like a father gently prying something dangerous out of a toddlers hands, help me open my fists. He reminds me that life ISN'T fair, or else HIS son wouldn't have had to die for ME. He reminds me that His mercy and goodness are going to allow me to see Caroline in Heaven instead of being eternally separated from her. He allows me a glimpse into His own pain when I, or any of His children, run away from Him. It's amazing what God's perspective can do to a mood or a thought or a feeling. He is always greater. I don't always admit it, but it's true. He is always greater.

So even when I don't want to, even when it hurts, I have to open my fists. It's only then that I'm fully trusting God to take care of me.

To survive this, I have to open my fists.

Friday, November 25, 2011


So yesterday was Caroline's "first" Thanksgiving. We spent it with some friends of ours since we're all distant from family for now. It was a great time, and we are blessed to have great friends here.

Caroline was on my mind most of the day, from "her" first Thanksgiving dinner (albeit through me),
to the idea of being thankful in the midst of our situation. I can honestly say that I was thankful, if for nothing else then for that we have Caroline with us for now.
It doesn't mean that it's easy to get through holidays. I was actually pretty ok most of the day, but there were definitely moments during the day when I had random thoughts like, "I hope we get to have Caroline with us next Thanksgiving" and "I hope that we REALLY have something to be thankful about soon because God decided to heal Caroline." I'm not saying that any of my thoughts were "right" or "righteous," but they were real. I can't say that on Thanksgiving I was really wanting to be thankful for Caroline's condition, or the uncertainty it places in our lives. Not just Thanksgiving, either, but ever.

It's hard to be thankful sometimes in the midst of this. I try extremely hard to keep my focus on eternity, and I can be thankful for the grace and peace God gives me daily, but anything else is difficult. On a day set aside to thank God for our blessings, it was hard for me to thank Him for anything past today. Thinking about the future, with all the uncertainty, all the pain that could possibly come, all the "missed opportunities" with Caroline...it's not something for which my heart just cries out, "Thank you, Lord!" I can thank Him for everything He's already done, and for everything He's giving me, and I can try to thank Him for what He WILL do, but it is so hard.

My selfish heart wants to say, "I'll thank you if you heal her." In the deepest parts of me, I can't seem to find the strength to say, "I'll thank you no matter what you decide to do." I have to be honest with God and let Him know that part of me. He sees it anyway, so I might as well fess up to it. And by acknowledging that part of me, I can ask for help to overcome it.

That's something I can be thankful for.

God doesn't expect me to be perfect. He doesn't even expect me to know what to do in this situation. He doesn't harbor any illusions that I can handle this on my own. But He does tell me, "And I will do whatever you ask in my name, so that the Son may bring glory to the Father." -John 14:13. If I don't know what to do, I just have to ask. "If any of you lacks wisdom, he should ask God, who gives generously to all without finding fault, and it will be given to him." -James 1:5.

So here's what God has taught me this week as I have struggled with Thanksgiving and all it entails...

He is worthy of my praise and thanksgiving no matter what happens here on earth. He sent His Son to die for me, so I could spend eternity with Him and not in eternal judgment and pain. He created me and my husband, my family, my daughter, and He knows what is best, even if we don't always like it. He is God, the Creator, Redeemer, Healer, Savior, Comforter, Friend. He doesn't owe me a dang thing, and I should still be grateful for what He's already given me. Even if it is His will to let Caroline go ahead of me into eternity, He's given me more than I deserve already in my life. When I can get my head on straight, I know that, but it's very hard to accept sometimes. It requires a lot of humility, something I don't particularly care for. It requires a lot of self-sacrifice and self-denial, both things I don't care for. It requires me to admit I don't know what's best, and that I am not God. Another thing I don't care for. It requires me to relinquish control to Someone I cannot see, Someone that I don't always understand, Someone who does things much differently than I would...something else I don't enjoy. Are we seeing a pattern here? I have to give up ME, so God can be glorified in me. I have to give up my desires, my life, so He can use me, so He can be glorified.

Oh, friends, it hurts. It isn't pleasant. It isn't fun. "Then he said to them all: “If anyone would come after me, he must deny himself and take up his cross daily and follow me. For whoever wants to save his life will lose it, but whoever loses his life for me will save it." -Luke 9:23-24. Self-denial isn't natural, and it isn't enjoyable. But it IS worth it. Opening my hands and my heart and saying, "Lord, take it all," is hard. Especially when one of the things I'm giving up is my unborn daughter. But here's the deal...it's not up to me whether Caroline will live only in my womb, or have a full life here on earth. I can reject Christ's plan, but it's still His plan, and it will still happen. If I can instead accept His plan and strive to be worthy of His calling, how much more glory will He receive, and how much more peace will I receive? He's not leaving me on my own like a cold-hearted tyrant. He's not doing this because He enjoys seeing His children in pain. I may never know the reason why this is happening, but I can see the good coming from it, even now. I can feel God's love and grace showering down on me. He is a good and loving God, even in the midst of this situation.

Don't get me wrong...this is a struggle. It's something God has to help me do everyday. Being thankful in the midst of this pain and uncertainty is beyond me, but it isn't beyond Him. When I am weak, He is strong. When I am selfish, He is selfless. When I am in pain, He is the Comforter. It is only by His grace that any of this is possible. I still beg Him for a healing miracle for Caroline. I still beg Him to let me keep her. I still beg Him to help me everyday as I struggle to accept His will, no matter the outcome. And He is good. He is faithful. He is gracious to me.

If I can find nothing else, THAT is enough for me to be thankful. "Praise be to the God and Father of our Lord Jesus Christ, who has blessed us in the heavenly realms with every spiritual blessing in Christ." -Ephesians 1:3

Tuesday, November 22, 2011


Do you ever feel frazzled? I looked up frazzled in the dictionary, just for fun, to see what it said. Apparently, it means to be worn out or fatigued. The etymology is from old and middle English with some words that looked like fasel but sound like fazzle, and then combined with fray to get get frazzled. The old and middle English words from which frazzle comes basically meant to fray, or unravel. How appropriate to how I feel when I'm frazzled. Worn out, fatigued, and unraveled.

Yesterday, I was a little frazzled. Today, I've been less so, but still feel a little bit at loose ends. Haha. Get it? Loose ends, unraveled? Ok, I'm a nerd, I know. Moving on.

Last week, God provided for me with a week of rest. I wasn't feeling so burdened with out situation, I felt more hopeful, and I was really feeling God's grace and sustaining power. I needed it. It's now been over six weeks since Caroline's diagnosis. As I've mentioned in other posts, it just wears on me after a while. It's difficult to live with this all the time, and only through God's grace can I really ever stand up under it.

This week has been a little harder for me, but I still feel God's nearness. It's only Tuesday, I know, but even so...

Yesterday, Monday, we had a meeting with a perinatal hospice organization. If you're curious about what perinatal hospice is in general, I've really found a lot of good information on this site: www.perinatalhospice.org. It was given to us by the nurse who is helping us at the hospital. It's not for the specific organization we're using, but gives some great overviews on perinatal hospice. Our specific organization will be helping us through our journey with Caroline if God doesn't step in and change things. We met with a hospice coordinator and a bereavement counselor, both who were extremely sweet and understanding. We didn't get into too much yesterday, but we'll be meeting with them several more times to talk about Caroline's birth plan, and some other specifics in case we get to take her home for a little while. As you can imagine, this is the hard part. This is confronting Caroline's anencephaly head on, talking about difficult things and making difficult decisions. I don't like talking about it, but it needs to be done. And if it has to be done, then I'm so grateful that God has provided people who are as compassionate and caring as these two ladies were last night. I am continually amazed at how much God is supporting us through this, even if it's through the people he puts in our path to help us. He even used another mother of a baby with anencephaly. She lost her baby girl not too long ago, and now knits little caps for the babies who come through the hospice center. We got a couple little caps for Caroline from her, and they are adorable. And since they came from someone who has walked a similar path, it is even more poignant and special.

I am beginning to realize, now that I've had enough appointments with different people after diagnosis, that no matter how well the appointment goes, and no matter what it's for, there's always a let down period afterward. When I say let down, I don't mean disappointment. I mean I am geared up emotionally for the appointment, unsure of how it will go, and unsure of what awaits me, and then it's over. The emotional energy has to go somewhere, and it usually manifests itself in my frazzled condition for a day or so after the appointment. That's what's happening today. I don't feel less hope. I don't feel upset or disappointed. I just feel...unraveled. It's a reminder to me of how little control I have of the situation. And it reminds me of Who is ultimately in control.

When I feel helpless or unsure, it points me to my Savior. When I feel out of control, it points me to Him who is in control. When I feel unraveled, it points me to the One who keeps me together. It's a good reminder, and one I need daily. Even though I am not perfect, and even though I know I don't always choose the right way to think or respond emotionally, it is so wonderful to have a God of grace that helps me to remember the right way. And forgives me when I don't choose to listen to it.

So today, as I'm feeling a little frayed at the edges, I'm looking to the one who can bind me back together. I'm looking toward the one who wove me together in my mother's womb, just as He is with Caroline right now, and knows which threads go where. It's only when I allow Him to put me back together that I can feel better. My heart still breaks to think about Caroline's future if God doesn't intervene, but God has my heart in His hands everyday, keeping it together, keeping the loose ends from fraying even more, putting back in place those parts that aren't where they should be. It is an enormous comfort to feel His care and concern. It is, in all honesty, pretty much my only comfort. And on days like today, when I feel like I'm on the verge of coming unraveled, He steps in to take my burden and make it lighter. He reassures me with His presence, and helps me remember my place in all of this. He is faithful, and He is loving. He gives me grace and peace when I need it, and He helps me bear this burden to give Him glory.

I am so thankful for a Creator God who knows how to knit, and knows how to repair the frayed edges of His children. In a lot of ways, this manifests itself in the emotional and spiritual lives of His people, but I also believe He can do the same thing physically. I'm still hoping that He sees fit to knit together the parts of Caroline that are not healthy, fixing the "frayed" edges of her little body. I know, though, that even if He doesn't, that He'll fix the frayed edges of me instead. And that's ok. Not pleasant to think about, and not something I want, but it's something I am growing to accept through His grace and goodness to me. He's letting us walk this path for a reason, and I will continue to do my best to honor Him in it.

Thank you, Lord, for your handiwork, both in my life and in sweet Caroline's. Thank you that you love us enough to make us a beautiful tapestry to show your glory, and that you're willing to constantly fix the fraying edges.

Thursday, November 17, 2011

Expectations and Choices

I am beginning to realize that people often have expectations of me in this situation. I don't always fulfill them. This isn't limited to strangers. Sometimes it's people very close to me. It can be frustrating for people to try to project their expectations onto me in a time that is so challenging. But I'm realizing something.

I'm not "normal."

In fact, no one is "normal" when it comes to a situation like ours. Everyone reacts differently and has different needs. Even Cameron and I, who are sharing this journey as husband and wife, are reacting to this with extremely different emotions and needs. God reveals different things to us at different times, and it's all based on his sovereignty and omniscience. He knows us better than we know ourselves, and provides what we specifically need to get through this. So when people don't understand me and my reactions...it makes sense.

Up to this point, I have been literally carried by God's grace. That is no exaggeration. Every time I think about our baby girl, it hurts. If I let those emotions rule me, I would never get out of bed. I am able to function on a daily basis only because I can rely on God to get me through the day. I am completely serious. This time with Caroline has made my trust in the Lord and reliance on Him increase exponentially. I would never have been able to imagine something like this happening before we got Caroline's diagnosis. I can understand why people look at me like I'm crazy when I say I'm doing ok for the most part. How can I be doing "ok" when I'm dealing with this incredibly difficult situation? By the grace of God, and nothing else.

I have recently felt as if I need to explain myself, not because I feel like I have to justify my actions and emotions, but because I want people to know the source of my strength, and to truly understand what I'm feeling so they know better how to pray for and/or support me. It's wearying to try to explain over and over that I'm not angry or depressed (at least in the clinical or common knowledge sense). I am more subdued and somber than I would be if Caroline didn't have anencephaly, but I am not overcome by those emotions. I have days where I let those emotions have more free reign, certainly, but it's not all the time. People are, I feel, expecting me to feel deeply seeded emotions of anger, fear, denial, and other such grief related emotions. I will explain why I'm not. At least yet.

For one, I have nothing to be angry about. God has blessed me with a child that is doing more for Him in-utero than most of us do in an average life span. He has blessed me with increased faith, gifted me with more grace than I knew existed, and granted me a peace that truly passes all of my limited, earthly understanding. Does it hurt to think I might lose my first child, a little girl I have already come to cherish? Absolutely. Do I wish it wasn't happening to me? I wouldn't be human if I didn't. But I honestly, truly, in all sincerity, am not angry. I'm not angry at God, I'm not angry at the world, I'm not angry at myself, I'm not angry at the condition. I know what anger is. I have struggled with anger in my life for a long time, but in this situation, God has granted me the grace not to be angry. Is it possible I will face feelings of anger at some point in this journey? A resounding yes. It is quite possible. But I don't know the future, and can only speak for right now. How can I be angry at the God who is sustaining me through this time, and who has the power to change my situation in an instant if he so chooses? How can I be angry at the world, which is powerless to control anything about my life because God is in control? How can I be angry at myself when I did nothing to bring this on, and cannot do anything to change it? Why would I be angry at a condition that is a direct result of a fallen world, which was/is caused by human sinfulness and nothing else? For me, it doesn't make sense to be angry, and it takes too much energy to be angry. My energy is focused on getting through each moment of every day, doing my best to glorify God while doing so. I don't have the energy left to be angry. In fact, the only times I have felt anger since Caroline's diagnosis is when I feel other people have said or done things that have been insensitive or hurtful, and it usually doesn't last long.

Fear is something I perhaps struggle with more than anger, but it's not a constant companion. Fear is something that is allowed to take root when trust in the Almighty God is absent. God is in control. What do I have to fear? "I sought the LORD, and he answered me; he delivered me from all my fears." -Psalm 34:4. "God is our refuge and strength, an ever-present help in trouble. Therefore we will not fear, though the earth give way and the mountains fall into the heart of the sea, though its waters roar and foam and the mountains quake with their surging." -Psalm 46:1-3. "So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." -Isaiah 41:10. "The LORD is my light and my salvation— whom shall I fear? The LORD is the stronghold of my life— of whom shall I be afraid?" -Psalm 27:1. "There is no fear in love. But perfect love drives out fear, because fear has to do with punishment. The one who fears is not made perfect in love." -1 John 4:18. I do not need to be afraid, for myself or for Caroline. God is in control, He is my help in trouble, He upholds me in His righteous hands, He is my salvation. What do I have to fear? I want to be made perfect in love, and that love will drive out my fear. Am I immune to fear? No. But I CHOOSE to subject those fears to the Lordship of Christ. When thoughts of fear begin to plague me, I ask God to help me not be afraid. And He does.

I am not living in denial either. This may be the most difficult to explain because I'm not sure human language can express some of the emotions and spiritual truths that I encounter on a daily basis. I'll do my best. I have a child growing inside me. She is very much alive right now, and I feel her every single day, punching and kicking and rolling and stretching. It feels very much like a normal pregnancy. I also have pregnancy hormones running through my system, hormones that are preparing me to be a mother, honing my maternal instincts, making me think about Caroline as my child, bonding us together. It doesn't matter that I know the medical "certainty" of her condition. These things are going to continue happening, and I want them to. She IS my child. I DO love her. She IS alive. She MAY die. She MAY come early. I MIGHT have to bury her shortly after delivering her. I live in the present, because that is the gift God has given me now. I have plenty of time to deal with the ugly truths coming in the future. "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." -Matthew 6:34. And I have faith that a miracle is still possible. If it doesn't happen, I trust that God will give me the strength and grace to handle it when the time comes. But I will NOT live in constant mourning for the only time I could possibly have with my first child. It is a choice I have made, knowing everything that is facing us, and not because I refuse to plan for or face the future. I will make the decisions I need to make as we need to make them, but I'm not going to dwell constantly on that aspect of our situation. Not only that, but I also don't see the point. Grief will come when it's time. But it won't be without hope. "Brothers, we do not want you to be ignorant about those who fall asleep, or to grieve like the rest of men, who have no hope." -1 Thessalonians 4:13. Even in my grief, I will have hope. I will not despair, even though I will mourn, if God does not choose to intervene. So what's the point of dwelling on something that may not happen if God decides to heal Caroline, and something that I will have plenty of time to do later? For now, I have my baby girl, and I will make the most of the time I have with her.

I want to emphasize something that I believe is important. Nothing is normal when it comes to grief or hard emotional situations. Every person is different, and every response will therefore be different. I don't want to ever assume that I completely understand someone's pain just because I've felt pain. I don't want to expect certain emotions or reactions in someone else just because it's what I've experienced.

I also don't want others' expectations "forced" on me.

In all of this, I am learning the importance of choices. It was a choice to keep Caroline and not abort her. It is a choice to turn to God instead of away from Him. It is a choice to live without fear and anger, when those emotions are very natural in a situation like ours. It is a choice to trust God with the future and not try to retain control by over-thinking. It is a choice to leave my entire self, and all my desires, at the foot of the cross every. single. day. It is a choice to continue praying for healing for Caroline with the caveat that I want God's will to be done even more. I am not living this way because it comes naturally to me. Quite the opposite. I am living this way, and handling this situation as I am, because I choose, every moment of every day, to give in to God's grace, to lean on Him and not my own understanding, and to ask Him to make me this way. I cannot force myself not to feel anger or fear. I cannot force myself to live in the present and let the future take care of itself. I can only ask that God would make it so in my life, and watch Him do the work in me to make it happen. I am not perfect. I make a lot of mistakes, every day. I give in to fear and anxiety sometimes. I give in to self pity. I give in to faithlessness and discouragement. But in all of this, God is in control and leads me back to the cross. He leads me to Himself. And when I am resting in His embrace, everything changes. Feeling right isn't important. If I know the truth and choose to embrace it, even when I don't feel like it, I am choosing righteousness.

I expect God to work a miracle. If it's not to heal Caroline, it will be to heal me (and Cameron). I expect God to stay beside me every step of the way. I expect Him to continue teaching me, to continue using Caroline's story for His glory. Those are expectations I want to have.

All other expectations are meaningless. Others' expectations of me, and mine of others. Meaningless, if it's not before the cross. When those expectations bring me pain, I have to lay them at the foot of the cross and ask God to maintain my focus.

"I eagerly expect and hope that I will in no way be ashamed, but will have sufficient courage so that now as always Christ will be exalted in my body, whether by life or by death. For to me, to live is Christ and to die is gain." -Philippians 1:20-21.

Monday, November 14, 2011

A Present Help in Times of Trouble

This past week was a little...interesting. While I still consistently felt God's grace guiding me along, I was worn. out. Completely. My poor husband can testify...I was not fun to live with. Pregnancy hormones + emotionally draining situation = bad news. Haha. But truly, it's been a little over a month since the diagnosis, and it is just outright wearying. It is wearing me down. It's a heavy burden to bear, and it's one I have to constantly carry. Well...kinda. I have a little help. By a little, I mean a lot. But it is something I have to live with everyday, and it's not easy.

Part of my way of dealing with things is to talk to my mom. She is a great tangible comfort and support for me, and she thinks a lot like I do, so she "gets" me when I'm not making much sense. We don't always talk about our situation, but just talking for a little while helps to ease the burden. Yesterday we talked about how God just showed up for us during church in an almost tangible way. My mom shared that she just felt almost like a literal, physical burden was lifted from her shoulders while she was worshiping, and it was such a sweet time for her to feel renewed. It was funny, because that was pretty much exactly how I felt at church yesterday. Apparently, God knew that we both needed a reprieve from the "suffering" that we constantly deal with. I had other members of my family share similar experiences.

Oh, I serve a great God. He doesn't forget us in our times of trouble. Far from it. Instead, he gives us what we need when we don't even realize that we need it. The longer I live through this nightmare, the more present and real God is to me. I have been a believer since I was 7 years old, and I have struggled and grown in my faith in stages as I've gotten older, but not until now does any of it seem important. I absolutely believe that whatever has happened in my life up to this point was to prepare me for this trial and whatever will come later. But this trial is forcing my faith into entirely new levels. It's like a teenage growth spurt, but spiritually. Haha.

It touched me that God provided relief for me and several members of my family on the same day. It was a little nudge to remind me that He is still in control, even to the point of deciding which days to reveal his goodness and grace to us in a tangible way during worship. There was no coincidence here. It was on purpose. And it was proof to me that God is still very present with me and my family, and He's not abandoning us as time goes on.

In fact, I have felt so loved and supported this weekend that I can't contain the gratitude in my heart. He has sent some amazing people into my life, and a bunch of them just showed me His love this weekend. I met up with one friend on Friday to talk and be supported, and God used it to show me some of my own shortcomings in this whole situation. That helps me, even though it is sometimes painful to admit that I'm not doing something God's way. I also spent some time with a wonderful friend on Saturday, and I was able to talk to her and feel completely supported and understood, without judgment or pre-conceptions. Church on Sunday, as I mentioned in yesterday's post, was a time of renewal and rest. And I received several things in the mail over the past few days that gave me tangible evidence that people care about me and are remembering me in my time of hardship. It means so much to me that people care. God is so good to give me such wonderful friends and family.

My husband, God bless him, also decided I needed to get some messages of encouragement. He posted on his blog (linked to the left under Helpful Links) that he wanted people to message me with encouragement. So I've gotten some of that too. Thanks to those of you who did. :)

Today is a new day. I woke up feeling so much better than I have in the past week. His mercies are new every morning, for sure. Last week, I wondered how I was going to get through the next few months bearing this burden. God spoke loud and clear to me this weekend...I'm going to be able to do it because He's taking care of me. He's in control, and He's got it all figured out, even though I don't. When this situation with Caroline starts to get too heavy for me, He's there to take it off my shoulders. I just have to keep trusting Him to take it and not try to hold on to it myself. It's a reminder He keeps sending me, through other people, through Scripture, through songs, through a quiet whisper from the Holy Spirit. As long as we face this trial, I will keep trying to remember, and I will keep relying on Him for grace to show me the way, even when I stumble and fail.

I am so grateful I have a God that cares about me so much. And one who sends people into my path to encourage and uplift me. Thank you, all of you who are supporting and encouraging me. And thank you, Lord, for being such an amazing God, big enough to make all this happen for my good.

Sunday, November 13, 2011

How Great is Our God

I've noticed that since we got Caroline's diagnosis, my worship at church has been much more sincere and authentic. It's kind of hard to hear words that point to God's glory and goodness and not be moved. In a lot of ways I'm so emotionally vulnerable right now that a lot of things are affecting me more than normal. But I know that part of the reason worship means more to me than it has in a while is because my relationship with God is so much more at the forefront right not. I hope it will always be this way, even when some of the emotions begin to fade. Having my focus be truly where it is supposed to be is such a sweet and merciful place to be. Communion with the Father through the Spirit is getting me through each day.

One of the songs we sang today was "How Great is Our God" by Chris Tomlin. I've always liked that song but today it hit me once again. There was not a whole lot in this song that pointed toward our specific situation, but focusing on God's greatness was something God apparently wanted me to do today.

Over the past month or so, I have really been focusing on God's grace and mercy, on his comfort and strength, and on his power to do miracles. Today God reminded me that He is great just because He is God. He is eternal, He is powerful, and He is great. It was a time for me to be humbled today. I've been so caught up in what I need/want from God, I haven't spent much time just praising Him for being who He is. He deserves my praise and adoration regardless what He's doing for me right now.

Even with that revelation...I can't help but share what He's done and praise Him for it. He truly has lavished me with grace and mercy. He has given me supernatural strength to handle this situation. He has comforted me when I have been beyond comfort, and He has shown me His power to reassure my faith. He is so great because He knows what I need before I even ask Him, and He just...takes care of me. In some ways I want to echo David in Psalm 8:4 when he said, "what is man that you are mindful of him, the son of man that you care for him?" Who am I that He would care so intimately for me? Why does He spend some of His infinite power on my situation? Why does He bother to show me His grace and love in such abundance?

"For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life. For God did not send his Son into the world to condemn the world, but to save the world through him." -John 3:16-17

"Know therefore that the LORD your God is God; he is the faithful God, keeping his covenant of love to a thousand generations of those who love him and keep his commands."-Deuteronomy 7:9

"Praise be to God, who has not rejected my prayer or withheld his love from me!" -Psalm 66:20

"But God demonstrates his own love for us in this: While we were still sinners, Christ died for us." -Romans 5:8

It doesn't matter why. God IS love. It's who He is. It's part of His character to show it to us, regardless of whether or not we deserve it. For, in fact, we DON'T deserve it. I know I don't. That's part of why I have been so humbled by His gracious love during this difficult time. He has given me far more than I ever deserved.

I've had some people tell me that if anyone deserves a miracle, it's us. I am flattered that they would think us worthy of a miracle...but we're not. No more than anyone else. God desires righteousness, surely, but He doesn't desire it as a way to measure us on a scale against others. His mercy and grace is not reliant on how good we are or how much we deserve it. Our righteousness is like filthy rags (Isaiah 64:6), because we are sinful creatures. God gives out of his goodness, not because of our goodness.

If God gives us a healing miracle, it's not for us or because of us. It's so He can be glorified in our lives. God loves us, and wants to give us good things. I think Caroline would qualify as a good thing. Haha. But it's not about us, ultimately. It's about Him. That's how I can live with the thought that He may not heal our baby girl. That's how I can still praise Him in the midst of the uncertainty. Our God is great, and He is way bigger and more important than I am. When my focus is where it's supposed to be, it's a lot easier to let Him be in control, and to let Him guide my thoughts and actions. It makes it a lot easier to CHOOSE to follow Him in every thought, every emotion, every decision. That's truly what I have to do. I have to choose every moment of every day how I'm going to handle this situation. It's never far from my mind. It's never completely gone from my mind. And every time a thought comes into my head about Caroline, I have to choose whether to be angry and bitter or humble and grateful. It is not an easy decision.

So in all of this, I must remember that our God is great. When He is the focus, and He is in control, things go so much better. And He is great. Only a great God could be getting me through this without losing my mind.


"How great is our God, sing with me
How great is our God, and all will see
How great, how great is our God!"

Monday, November 7, 2011

The Truth

As time goes on, I wonder if things are getting easier or harder to deal with. On one hand, the distance from the shock of Caroline's diagnosis makes it easier to accept. On the other hand, the passage of time means the emotional strain increases, and the time I have with Caroline is growing shorter, barring our healing miracle.

So really, it's not really easier or harder. Some days are easier, some are harder. It just depends on the day. I usually have more good days than bad days, but I still have bad days. Those are the days when I let fear and anxiety take root in my mind and heart. They're the days when I can't find the motivation to do anything. They're the days when I just let myself feel sad and helpless and hopeless. The hope and grace of God are never far distant, I just don't pay as much attention to them on my bad days.

It's definitely emotionally draining to live with this. It's not something that can be resolved quickly or prettily, it's not something you can really ignore until it goes away. It's not something you can easily dismiss from your mind. That's probably the worst part of this whole deal. It's like a never-ending horror scene playing over and over in my brain. I can "look away" for a while by distracting myself with other things, but it's always there in the background, waiting for me to look back at it. I can try to change the images to something more positive, and that sometimes works for a while. But it does seem like no matter what, I always end up looking back at the horror.

Then there are the physical things. My belly is growing, it seems like daily. I feel Caroline kicking all the time. I can't really ignore her presence. It's somewhat surreal. I know I have her for now, and I know that my pregnancy is progressing "normally" for now, but it almost feels like this is some other-worldly experience, and the end result is that I don't get the fun stuff when it's all over. I'm pregnant, I feel my baby, and yet I know that when she's born, it's very unlikely I'll get to keep her for any amount of time. It's very unlikely she'll ever come home to our house. I won't have a nursery, I won't get to do all the fun mom-to-be stuff. It's just weird to think about having a child, going through all the stuff before she comes just like normal, and then...that's it. There will be no normal at her birth, or after it, unless God decides differently.

Sonograms aren't "fun" for me, even though I do enjoy aspects of them. I love seeing Caroline moving around, giving the doctors a hard time by not being in a position they need her to be in to get certain pictures. I love projecting a personality on her. I love having pictures of her to take home, as a memory of her. I hate seeing evidence of her condition. I hate going in to the doctor's office with anxiety, hoping everything is still ok, wondering if I'll see her healed miraculously. Sonograms should be fun, getting to see your baby, watching her grow, getting excited for her to come into the world.

On my bad days, I feel really gypped. I don't get any of the "fun."

It is difficult for me to pull myself out of that thought process sometimes. It is only by the grace of God that I can. It takes supernatural effort. He has to remind me that he has a plan for me, to prosper me and not harm me, to give me a hope and future (Jeremiah 29:11). He has to remind me that his grace is sufficient for me, because his power is made perfect in weakness (2 Corinthians 12:9). He has to remind me that he will never leave me or forsake me (Deuteronomy 31:8). He has to remind me that he's been there, given up a child in his Son. He has to reassure me that I don't need to be anxious, but I do need to pray, with thanksgiving, so that his supernatural peace can guard my heart and mind (Philippians 4:6-7). My natural inclination is to sit in that pool of self-pity and despair, to marinate in the "unfairness" of this situation, to stew in my own hurt and self-righteousness. It is truly only through his love and grace that I don't stay there. He won't let me.

It doesn't mean I always like it, or that I'm very good at listening to him. It's just a good thing he doesn't pay attention to my shortcomings, but comes along-side me to carry me through my bad days because he's perfect. And amazing.

It still hurts to think I won't get to celebrate Caroline's first birthday, or any birthday for that matter. It still stings to feel her kicking and know that unless God intervenes, this is all I get with her. I still get scared that I won't be able to stand up under the constant weight of anxiety and uncertainty. I still hate that I won't be able to go shopping for all the cute little frilly clothes I pass in stores all the time. It just hurts to know I probably won't get to have a relationship with her here on earth, to get to know her personality. It hurts a lot. And in those moments of pain, I don't want to praise the Lord. I don't want to rejoice in the blessings I have now, regardless of the future. I don't want to look for the good coming from this. I just want my baby girl. And then...

"I consider that our present sufferings are not worth comparing with the glory that will be revealed in us." -Romans 8:18

The idea in this verse is all I have. If/when Caroline leaves us, this is all I have. When I get to Heaven, this will seem so much less painful. This will be "worth it." I know intellectually that God will be glorified, and I know that his plan is a great one. I know that Caroline will touch lives no matter how long her earthly life is. And when I can't think of anything else that is positive about this situation, this is all I have. My present sufferings are insignificant compared to the glory that will come later. It doesn't mean my hurt is insignificant to God, or that he doesn't care about it. It doesn't mean that while I am alive on this earth, that this won't continue to hurt, even long after Caroline is born. Even if God does decide to heal her, the pain I've experienced and the lessons I have learned by walking through this journey will leave an indelible mark on my life. I don't know what the outcome will be here on earth, but I know the outcome for eternity...God will be glorified, and it will be good.

This is what I HAVE to focus on to get through this. Even on my bad days, it isn't long before God nudges me in the right direction. He loves me too much to let me be defeated. He wasn't defeated, so he won't let me be. He points me to the truth, and the truth sets me free (John 8:32). God is so gracious.

"For the perishable must clothe itself with the imperishable, and the mortal with immortality. When the perishable has been clothed with the imperishable, and the mortal with immortality, then the saying that is written will come true: “Death has been swallowed up in victory.”

“Where, O death, is your victory?
Where, O death, is your sting?”

The sting of death is sin, and the power of sin is the law. But thanks be to God! He gives us the victory through our Lord Jesus Christ.

Therefore, my dear brothers, stand firm. Let nothing move you. Always give yourselves fully to the work of the Lord, because you know that your labor in the Lord is not in vain." -1 Corinthians 15:53-58

Death is not victorious. Its sting is made innocuous. Christ has given us victory. Our labor is not in vain. Whether he will deliver Caroline from immediate death here on earth, or if the victory is meant to be of the eternal kind, he is still victorious. And because of that, I cannot dwell on the negative, I cannot focus on the hurt, and I cannot give credence to anything else. Death has been swallowed up in victory!

On my worst days, in the midst of extreme sadness and pain, he is victorious. I can't help but turn my eyes from myself, from my pain, and look to him in victory. He knows I hurt. He knows I'm sad. He knows this is hard. But his power is made perfect in weakness, and he wants me to remember that he is victorious. To do anything else is to spit on his sacrifice.

So I may not, on my bad days, feel like praising him. I may not feel like looking for the good in this situation. I may not feel like I can overcome the fear, anxiety, and pain. But the truth is still the truth. He is victorious, and he is with me. If that can't take the focus off my own emotions and back where it should be, on my Savior, Redeemer, and Friend, then nothing can. I don't always have to feel it. I just need to know it.

He is victorious!

Thursday, November 3, 2011

Check up

Because of Caroline's condition, I'm being monitored with sonograms every 4 weeks. This will check on Caroline's growth, check me for any complications, and just make sure everything is going well. My first sonogram since diagnosis was Tuesday.

I was a little nervous about this appointment. I just wasn't sure how Cameron and I would handle things emotionally. Last time we went in, it was for the diagnosis, and it was a very, very hard day. So this time, I wasn't sure if we'd break down seeing our baby girl on the screen, with the evidence of her condition made obvious to us. Not only that, but we were also going to be meeting with a nurse from the hospital where I will deliver Caroline, to start talking about a birth plan. This nurse specializes in deliveries with grim or fatal diagnoses, like ours. Anyway, I was just nervous.

We actually met with the nurse first, to start discussing the birth plan. She was so nice. She didn't ask us to make any decisions. She gave us some information, answered some of our questions, and reassured us that she'd be with us the whole way. She gave us things to think about and some resources to start forming our birth plan. I only shed a few tears. God was close by, holding me up.

I was also a little nervous about how I was going to handle things regarding our miracle. As I've said before, I truly believe God can heal Caroline miraculously, and if he does, it's very possible that we'll go in to a sonogram one of these times and everyone will be shocked to no longer see an anencephalic baby. However...I know that's not a guarantee, and wondering WHAT exactly I would see in the sonogram was a little nerve-wracking. Even with all my talking about wanting God's will (which I do), and about trusting his plan (which I do), and knowing that he's in control (which he is), I'm still human. And I still desperately want to see my baby healed. So I was very anxious to see if he answered my prayer the way I wanted him to. Not only that, I was nervous about how I would respond if he didn't. Would I be extremely disappointed and let down? Would I handle it well, or break down crying? Would the faith I've been clinging to waver? I wasn't sure about anything.

The office where I get my sonograms is a specialist's office, and they deal with high risk and difficult pregnancies all the time. They're amazing. They have been so compassionate, and so respectful. I truly appreciate the fact that we get to go there if we're going to have to deal with all this. Anyway...they were great once again. They were kind and compassionate, but they weren't overly somber, which helps. Pity can be discouraging and contagious. I don't need to pity myself. I have enough going on. Haha.

The sonogram went well. Everything was "normal" besides her anencephaly. I didn't have any complications developing yet. And we got pictures. :) That was something I was looking forward to. I got print outs of several sonogram pictures, and I will treasure them. This one of my favorites:
She's so precious to me. If this is all the time I have with Caroline, then I'll take what I can get, including pictures. I didn't break down, and when her anencephaly was again obvious to us through the pictures, I wasn't overcome by disappointment. In fact, all I felt was a twinge, the same thing I feel anytime I think about her condition. I was actually quite surprised that I didn't feel anything else. I was just at peace. Truly, sincerely, at peace.

Then I realized something. God is amazing. His grace has carried me through this far. Why did I doubt it would continue?

Not only that, but I also realized that all the stuff I've been talking about on this blog, all the lessons I've been learning, all the truth God has whispered to my heart...it's not a fleeting defense mechanism to deal with the uncertainty and pain. It's life-changing grace and truth that really has transformed me.

And I was shocked.

Deep down, I guess I doubted that this faith and grace would last. I doubted that I would truly be able to continue to lean on God and rely on him. I am a sinful creature that has failed many times before, and I guess I just assumed it was only a matter of time before I broke down and threw off the grace and peace.

I am an idiot.

God's bigger than that. He's giving me his grace and carrying me through this. His peace has overwhelmed me. Did I really believe I'd be able to get rid of God, even if I wanted to?

"Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the LORD your God will be with you wherever you go."- Joshua 1:9

"The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.”" -Deuteronomy 31:8

"Yet the LORD longs to be gracious to you;
therefore he will rise up to show you compassion. " -Isaiah 30:18

"No, in all these things we are more than conquerors through him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord." -Romans 8:37-39

"He heals the brokenhearted
and binds up their wounds. " - Psalm 147:3

"Yes, my soul, find rest in God;
my hope comes from him." - Psalm 62:5

"In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express. And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for the saints in accordance with God’s will." -Romans 8:26-27

"The LORD is near to all who call on him,
to all who call on him in truth.
He fulfills the desires of those who fear him;
he hears their cry and saves them. " Psalm 145:18-19

"For he will command his angels concerning you
to guard you in all your ways;
they will lift you up in their hands,
so that you will not strike your foot against a stone." -Psalm 91:11-12

Seriously. How many times does he have to tell me? He's not ever going to leave me. When I can't pray, he does it for me. He sends angels to watch over me. He heals the broken-hearted. Nothing can separate me from his love. He longs to show me compassion. Nothing I do is going to get him to leave me alone.

Why WOULDN'T I want that? Why would I even question his faithfulness to me? Why would I let myself think that I could possibly do something that would result in his abandonment or lack of concern?

He is evident in everything in my life right now. He shows his power in pictures of Caroline. He shows up when I'm weak and need him. He shows his concern by sending people to care for me. He reminds me of his goodness through Scripture, often given to me through other people. He sends songs to me to communicate a message I need to hear. He encourages me when I feel lost and alone in this quagmire of emotion and faith.

And He shows up in a big way when I'm in a doctor's office and can feel nothing but peace as I look at my child on a sonogram screen, knowing her condition is fatal unless he intervenes.

Oh, yes. My God is a big God. He is all powerful, all knowing, everywhere at once. And yet he is with me, little ol' me, always. He knows the depths of my heart, and every hair on my head. He created the entire universe, and he also individually knit me together before I was born. And he's doing the same for Caroline. He knows me intimately, and desires for me to know him. He walks with me as I'm struggling, and he smiles when I'm rejoicing. He is so big. He is so awesome. And he is so CLOSE. He is so concerned for me. He is so compassionate and loving and gracious, to ME.

Sometimes, I just can't fathom it. I feel so humbled and unworthy of his amazing love and grace; probably because I am unworthy of it. But he gives it to me anyway. He has adopted me into his family, and he loves me and will be with me forever, no matter what.

"Whatever my lot, thou hast taught me to say,
It is well, it is well with my soul!"