Saturday, December 31, 2011

This is Where the Healing Begins

It's Saturday. My family just went home, and Cameron and I are on our own for a couple days before following them to my home town for Caroline's funeral. Caroline's memorial service was Thursday night. It's been a crazy week.

I have been amazed at how everything has worked out. God has continued to be gracious. We've really needed it this week. Planning Caroline's memorial was probably one of the most difficult things I've ever done. Not just emotionally as far as feeling Caroline's loss, but also the stress on my relationship with my husband as we have had to work together and come up with a service to satisfy both of our needs, the stress on my family as they've been helping us, and the emotional and spiritual ache of wanting the service to be both celebratory and mournful while being incredibly meaningful. It. was. hard. So hard. Without a strong family and a lot of grace, we would have been an utter mess.

I have uploaded bits and pieces of the video we have of our service to the "Remembering Caroline" page at the top of the blog. Feel free to watch. It starts with Cameron telling about the beginning of our story and moves to my parents talking about our experiences with Caroline and her birthday. The end was me talking about our great victory because of our eternal hope in Christ. Just be warned that there were some tears. :)

We are still grieving for sure, but we are also feeling so much grace and peace. God is so good. We know that we will always feel the pain of loosing Caroline while we're still here on earth, but we also know that God is faithful and will continue to comfort us and keep up where we need to be. I am so grateful for His comfort. I really don't know what we would be doing right now if He wasn't taking care of us.

I have learned so much throughout my time with Caroline, but even this week I have learned even more. I know situations like ours can often drive spouses apart, but by God's grace Cameron and I have actually grown closer together. I know that situations like ours can cause a lot of fear and anxiety for future pregnancies, and while I'm not entirely there yet because we're not pregnant again, I haven't been overcome by those fears and anxieties looking toward the future. I can't say I haven't thought about it and wondered, but it hasn't been an overwhelming thing. And while we're still mourning Caroline's loss, we really are also rejoicing in His grace that she's in Heaven waiting for us.

I can't really even explain how everything has come together for us, physically, emotionally, and spiritually. I can't explain my emotions very clearly, either. I feel joy, sadness, relief, and hope all at the same time. I wonder about the future and what God has for us. I know it will be good, and that everything will point back to our loving Savior. I am also exhausted by everything that has been going on for the past couple months. Diagnosis, fear, anxiety, worry, faith, grace, hope, uncertainty, loss, relief, pain. But even as I'm exhausted, I am grateful and satisfied. God is gracious, loving, kind, and faithful. He has given us and will continue to give us everything we need. I am truly amazed.

I hope as you read our story that you will know the same things we know, learn the lessons God has for you, and rejoice in His goodness in your own life. I hope God is glorified in us and our story, and that He will be glorified in your life as well.

The last song we played at Caroline's service was "Healing Begins" by Tenth Avenue North, a song Cameron has referenced on his blog several times. The chorus says, "This is where the healing begins, oh, This is where the healing starts, When you come to where you're broken within, The light meets the dark, The light meets the dark." We've come to where we're broken, and we are healing thanks to God's light meeting us in our darkness, in our darkest place.

Saturday, December 24, 2011

Christmas Eve

Today has been hard. There is absolutely no other way to say it. It's just been hard. We have arranged for travel to my hometown, which means we're that much closer to laying our sweet Caroline to rest. Which means that today was that much harder.

I'm really missing Caroline today, partly because it's Christmas and I was planning to have her here with us, and partly because it's just sinking in that she's really gone. My Caroline bunny has gotten a lot of use today. I had to just curl up in bed and have a good cry. I let God know how much I was hurting, and I asked...ok, begged...Him to help me. I really can't deal with this on my own. I need His grace and mercy or I'm going to crumble. It's just that simple. I honestly don't know what I would do without Him.

Today has probably been one of my weakest days to date in my journey with Caroline. My heart is just rebelling against the reality, wanting things to change, wanting my little girl back, wanting God to make things different. I don't want to go through this pain. I don't want to make all these plans. I don't want to feel like crying anymore. I don't want to think of the eternal, because the right now hurts too much. It's really, really hard.

As I've said before, I know the truth, and if I can just manage to look to the truth, my emotions will follow. That is very difficult to do today. I know the truth is that Caroline is better off where she is. She's whole and healthy, spending her days worshiping Jesus, without fear, without pain, without sadness. She knows only joy and peace and awe of the Lord. I know the truth that someday, I'll be where she is, experiencing the joy she is. I know that eternity with her in Heaven will be amazing, and that this temporal life on earth will seem like a blink. I know the truth that God will get me through this difficult time, that His faithfulness will never end, that His grace and peace will sustain me when I feel like I can't go on anymore.

I know the truth that God knows how I feel because He lost a child, His Son, too.

And today is the day before we celebrate the birth of that Son.

I wish it was easier to focus on the eternal. I wish it was easier to focus on the truth. I wish the present reality wasn't so painful. But...I know it's not worthless. Another truth. "Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us." -Romans 5:3-5. I'm not really wanting to rejoice in my sufferings right now. But I'm doing my best to hold on to the hope spoken of in the later parts of this excerpt. If I suffer well, I will learn to persevere. If I learn to persevere, I will gain character. If I gain character, I will learn what true hope is. That true hope is perfect, and won't ever disappoint me because it's tied up in God's love through the Holy Spirit. And what does the Holy Spirit reveal? God's love, which led to Jesus's redeeming sacrifice, which leads to my own forgiveness, so I can live in Heaven someday, with the Lord, and with Caroline, and all the other believers who have gone on before me.

As wonderful as that truth is, and as much hope as it brings me, I still struggle to live it out. I'm still learning how to suffer well. I'm not very good at it these days. I'm very glad that God is patient, gracious, and merciful. I'm so grateful that He forgives me when I screw it all up. I'm glad He can understand my hurt so He can comfort me.

Because I do hurt. A lot. And nothing but God's grace and comfort can make it at all better.

So while I struggle through this holiday, celebrating Jesus's birth and the beginning of redemption while still hurting and missing my sweet baby girl, I will cling to Jesus. I will trust that He's going to hold me when I weep, catch me when I fall, and comfort the deepest hurts I have. I will learn to hope as I struggle to persevere. I hope His glory will shine through my pain. I hope His grace will touch someone else's hurting heart because they can see it in me. Not because I am some amazing person...Ha! I'm not. But because God is good, He is powerful, He is loving, He is gentle with our broken hearts, and He longs to meet us where we are.

Right now, that is all I have. No earthly thing, person, place, or idea can help me. Nothing on this earth makes the pain bearable. The only thing I can rely on to make things a little better is the eternal. Only the eternal.

Thank you, Jesus, that you came to earth to give us the eternal, through your ultimate sacrifice. Don't let me forget that in the midst of my hurt. To God be the glory. And thank you for my Caroline, even as I miss her terribly.


Thursday, December 22, 2011

One week

I'm amazed that it's already been a week since Caroline was born. What a crazy week it's been. I am emotionally exhausted, and physically worn out. I am so grateful that this week our church has been amazing and brought us food every night. That is just one less thing we've had to worry about.

We've had a lot to do this week. Working on arrangements for Caroline, scheduling services, working out transportation for her and us. And it's the week of Christmas, so we've been trying to get stuff together for that, although that's been a low priority.

One nice thing is that we got our pictures back from our Now I Lay Me Down to Sleep photographer. They turned out so well. I love them. I'll post some at the end of this post. This organization is awesome. You can learn more about them at their website... http://www.nowilaymedowntosleep.org/ They do photography for people who experience the loss of a child. We love our pictures.

I also have a bracelet that was given to me by several friends of mine.
I've been getting charms for it from people since Caroline's diagnosis. It's almost full now, and every time I look at it, it means so much to me. I know it comes from so many people, all showing they care. I pretty much haven't taken it off since I went into the hospital to have Caroline. I loved it before Caroline was born, and now it just means even more. So if you're one of those friends who has contributed, know that you are appreciated and have made a difference for me during this time.

My aunt and uncle gave me a stuffed bunny with Caroline's name embroidered on the ear.
I cried when I opened the box it came in. Cameron and I have shared it since then, and it has actually brought me a lot of comfort. I didn't expect that, but it has. I guess sometimes I just need something small and cute to hold onto since I can't hold on to Caroline. I miss her terribly.

Today has actually been a little bit rough. We've had to do some things that weren't exactly pleasant, and it's been a challenge. It just hurts to make some of these decisions and to know how final they are. It hurts to face reality and know the truth about Caroline. There will just be some days when this whole situation just stinks. Today was one of those days. Through it all, though, I have had more peace than I thought possible. Even today, as I had several moments of deep grief and hurt, I could feel God's loving arms surrounding me. I can't explain it, really. All I can say is that as I sat there weeping at one point today, I all of a sudden felt a heavy weight lifted from my heart. The sadness remains, and the hurt will come in waves for a long time, I'm sure, but the deep, soul-sustaining peace and comfort I have felt the last couple days is more than I could have ever imagined.

I will confess that yesterday and today were hard. Extremely hard. We had to escort Caroline from the hospital to the funeral home yesterday, and we had to go to the funeral home again today to take care of a few matters. It makes it all seem very real and very final. I broke down several times, both yesterday and today. It hurts, and I hate it. I tell God every day, and every moment I feel almost overcome, that I miss her and need His help to get through that moment. He is so gracious to give me the comfort and peace that I need. I wouldn't be able to make it through this without Him. Seriously.

I know there will be hard days amidst good days. I know God will get me through each one. I know that as each hard decision comes, we will make it to the best of our ability, and keep moving to the next step. Only by God's grace. And for that I am eternally grateful. I'm trying to keep an eternal mindset, but it's hard sometimes. It's especially hard when I'm so sad, and when I miss her so much. The best thing I can do, though, when I miss her and feel the extreme emotions coming on, is to remember the eternal. "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." -1 Corinthians 15:54-57. I don't want death to have victory over me, even temporarily, as I grieve my baby girl. Where, O death, is your victory? Where, O death, is your sting?

I hurt. I can't deny that. I cry. I mourn. I grieve. But I also have hope. Even in my darkest moments, I still know the truth...I'll see my Caroline again someday. I may not feel the ultimate comfort of that at the moment, but as long as I know that truth, my heart and my emotions will eventually follow. Just like I had to focus on the truth while Caroline was still with us, as we were waiting for God to reveal His will, I have to focus on it now. God is in control. God has a plan. God loves me, He loves Cameron, and He loves Caroline. I will see her again in Heaven. All of that truth makes the pain bearable. It makes this whole situation less agonizing. My heart is broken for the time I have on earth, but it will be whole in eternity. Just like my precious baby girl is now whole in Heaven. I will miss her every day, but I can look forward to seeing her again.

That is what gets me through each day. God's grace, both for me and for my baby girl. I love you, precious Caroline.









Tuesday, December 20, 2011

Days

Before Caroline was born, I counted the days from diagnosis. When she was born, it had been two months and 9 days, exactly ten weeks. She was diagnosed on a Thursday, and born on a Thursday ten weeks later. Now I'm counting the days since her birthday. I can't believe it's already been 5 days. In some ways, it feels like just yesterday I had her in my arms. In other ways, it seems like it's been an eternity. I'm sure that's pretty much how it will be the rest of my life. I know I will always miss her like I lost her yesterday, but at some point, it will seem like it's been a long time.

I measure time in days right now. I can get through the day, but looking past today is often very difficult. In some ways, I have to look forward...we have things to plan for our sweet baby girl that will take place over the next few weeks. But when it comes to what happens after that...I'm ignoring it right now. Today is painful enough, I don't need to worry about future pain. God is good and gives me what I need each day. I trust Him in a new way each day as new things happen and make me face new hurts or new hope. It's just how it's going to be, maybe forever, but at least for right now.

In two days, it will be a week after Caroline's birthday. The first milestone of many I will have to pass. Then will come Christmas, a holiday I thought she would be here for, with us physically in my womb, not already with Jesus. Then the new year, the year she was supposed to be born in. This blog post is the first time I've allowed myself to look that far. I can only say that I'm glad my God is faithful, and will get me through each hard time as it comes. And for now, that is enough to get me through each day.

I miss Caroline terribly. I never knew I could love a little person so much in so short a time. I wish she was still here. I tell Jesus everyday that I miss her, that I wish she was here with me instead of there with Him. I don't like having to make decisions about her that don't include a future with her, only a past. The hurt is tremendous, and I have to lean on Him extra hard these days. There is an underlying current of peace and grace, but there is a strong wave of grief and sorrow. I know it's ok to feel the sorrow, to grieve my sweet baby girl. I know it's going to hurt, and that God understands it. I know He'll be there to comfort me when no one else and nothing else can.

But it's no fun. At all.

This is by far the hardest thing I have ever done. It will continue to be, I think, for the rest of my life. I am grateful that I have amazing friends and family to support me, and a loving God that will take care of me. I am also glad that I have a Savior that bore the penalty for me and my baby girl, so we could be together again in Heaven someday. That is one of the only things making this whole situation bearable, knowing that this is not the end. Knowing Caroline isn't really gone, just in a different home.

So. Days. Used to measure my loss, but also my comfort. Each day brings pain and grief, but also mercy and grace. Every day brings me farther from seeing my daughter here on earth, but closer to seeing her in eternity. Each day brings the helplessness of loss, and the hope of future reuniting. I learned to deal with opposing realities when Caroline was with us, and I'll continue to deal with opposing realities for the rest of my time here on earth. God's grace will continue to help me withstand the strain. God's comfort will continue to remind me of the eternal. God's kindness will continue to bring me joy in the midst of uncertainty and pain.

That's all I can do for now.

Make it through each day.

I miss you, sweet baby girl.

Sunday, December 18, 2011

Sweet Baby Girl

It's Sunday, and our sweet baby girl was born early Thursday morning. We came home on Thursday evening, after much too short a time holding our Caroline Grace. Handing her over to the nurse for the last time is one of the hardest things I've ever had to do. I knew it wasn't really "her" anymore, but it was all I had of her here on earth. Oh, it was so hard.

It's been a few days now. My family has gone home for a little while, although they'll be back soon. Cameron and I have a lot of decisions to make and a lot of plans to plan. The next few weeks will probably be some of the hardest of my entire life. I don't want to have to think about these things. I don't want to be making final preparations for my baby girl. I don't want her to be gone.

I've cried a lot theses last few days. I've been so sad that she's gone. I've missed her so much. And yet in the middle of all of it, God is gracious. He has given me peace beyond understanding. He has given me grace to withstand the strain. Even in my saddest moments, I am not overcome. I can't explain it except to say that God is holding me in the palm of His hand. He's really and truly taking care of me. He's giving my husband the ability to be sensitive and kind, even as he's mourning along with me. He's giving me the ability to be kind and loving toward Cameron, even as I don't know what to do.

And that's the thing. I don't know what to do. In all of my talking to my mom, dad, sister, and Cameron the last few days, I've realized that I had managed to figure out how to function with Caroline inside me. I had learned to deal with the strain of hope versus "reality." I had learned to live in limbo. I had learned to love Caroline while she was "with" us in my womb.

I am now in an entirely new place.

I'm no longer in limbo. I'm no longer able to hope for a healing miracle for Caroline. God has answered that question for us. He gave us our answer gently, but He did give us our answer. She came in a surprise way at a surprise time. She came just how God planned for her to. And I am so glad God was in control. He gave us everything we needed. I would never have done it the way He did it, but it was perfect. And His grace and mercy in the midst of it has been absolutely incredible. If I've ever been overwhelmed, I have been overwhelmed in the last few days by God's grace and goodness. I have felt absolutely amazed by His provision and love. Oh my word, He has provided so much. I am so grateful and feel so unworthy of it all.

But even in all of this, I am in a new place, and I don't really know how to handle it yet. Like before, God is getting me through it and showing me each step, but I no longer have any idea what I'm doing. I'm learning to trust God all over again, with a different set of circumstances. I'm learning how to live in a new life, without the earthly presence of my sweet baby girl. I'm learning to rely on God for strength to get through the hard times. Things were hard before, and they're hard now, just in a different way. God is still faithful to give me what I need, as I need it, exactly how I need it.

There are a lot of things coming in the next few weeks and months that I am really not looking forward to. A lot of it is going to hurt so, so much. And I am slightly afraid and slightly unsure of how things are going to go. I am begging God to help me, a lot, these days. Sometimes, I just sit still and cry and lift up a pitiful, "Please help me, Lord." He knows what I mean, even if I can't find words. And He knows I'm trying, however fallibly, to trust Him and His goodness for the future. He knows I'm human, that I have crazy emotions, and that I need His supernatural help to get through these things.

I am so glad He is who He is. I am so glad He can handle all of this. Cause I know I sure can't.

In all of this, I'm trying to maintain my eternal perspective. This mourning is a lot easier if I can remember that it is temporary. When I get to my eternal home in Heaven, my life here on earth is going to seem like a blink, and my time in the presence of my Lord, and my sweet daughter, will be forever. Forever. Like, for all time. Where years won't matter. I don't even know if years will exist.

In some ways, I'm so grateful that Caroline came during the Christmas season. It's going to be a constant reminder that her birthday was near Jesus' birthday (or at least the time we celebrate it corporately). It's going to help me remember that I'm going to see her again because another tiny baby came 2000 years ago. I won't be able to forget it. It will help me keep my focus on what it should be on. Even in that aspect, God is good. He wants the best for me, and He's making it easier for me to remember what I need to remember.

I know I have a lot of difficult days coming. I know I'm going to have some struggles. I know I'm going to be sad, and cry a lot. But I also know God is going to be with me. That He's going to help me. And because of that, I have peace. I don't understand it, but it's true. I am so grateful. So, so grateful. To God be the glory.

Here's some more pictures...


Friday, December 16, 2011

Caroline's Birthday

Yesterday, December 15th, was Caroline's birthday. I was 28 weeks and 3 days pregnant.

I woke up on the 14th with some concerns about how I was feeling physically, and went in to the hospital to get checked out. When I got there, we found out I was having contractions every 2 minutes, but I wasn't feeling them yet. I was also 90% effaced and 1 cm dilated. My OB, who happened to be at the hospital when I got there, and the nurse we've been working with the whole time of Caroline's diagnosis, who also happened to be working when we got there, recommended that I go ahead and check in to the hospital and wait things out, because it was likely I would deliver sooner rather than later.

Cameron and I were slightly in shock. We were not expecting Caroline to come so soon, even though we knew it was a possibility. We immediately set into motion getting our support system informed. My mom booked a plane ticket on the soonest plane, and our local friends swept into motion to help us in whatever way they could.

I didn't progress very much throughout the day. I was slightly uncomfortable, but not enough for it to really phase me much. We had several friends stop by during the day to check on us, offer support, bring us food, pray for us, and anything else we needed. We are so blessed. My mom's flight came in on time in the afternoon, and some wonderful friends of ours brought her to the hospital from the airport. Once she was there, you can imagine the scene. Lots of hugs and tears and some "Thank you for not giving birth yet!," comments among laughter.

Later that evening, a bunch of people from our church came by to pray for us and offer their support. My room was full of people, and the love and prayers flowed freely. We are so incredibly blessed.

Around 7:45pm on the 14th, I was given a labor-enhancing drug to help me progress since I wasn't really progressing as expected. A couple hours later, I had dilated to 3 cm, and a couple hours after that I was at 5 cm. It didn't take long after that to get to the pushing stage. Cameron, as a first time dad, wasn't sure what to do with himself. He was so sweet and trying to do whatever he could to help. I felt like I was being mean to him telling him to stop doing things or demanding him to do other things, but he says I was being very nice, especially for a woman in labor. Haha.

Caroline Grace was born at 1:58am on December 15th. She came into the world with a smile on her face. I like to think that she saw Jesus come for her right before she came to us here on earth, and therefore came to us with that remnant on her face. We didn't get any time with her here on earth before she went to be with Jesus, but we know we'll love her just as much when we see her in Heaven. She was precious to us anyway, and we're grateful for the time we did have with her in my womb. I will never forget her or my time with her, or the time we got "with" her after she was born.

We were able to get some pictures of her and with her, and I will treasure them as a reminder of her and all she is. She is not just my daughter, but an inspiration for many, a witness of God's faithfulness and love, and the reason we have learned to love and trust the Lord more fully through this season of our life. I have had innumerable people tell me that our story has touched them, inspired them, or brought them closer to the Lord or back to Him. I say this as "all she IS" because she is an eternal being, just as we all are. She has left her temporary home and gone to her eternal one, but she still "is" our sweet Caroline.

I will never regret any of our decisions. I will never understand fully how much God has done for us. I cannot fathom how much more He will do in the days, months, and years to come, all because of little Caroline. I feel incredibly blessed to have been chosen to be her mother here on earth, and to know I will see her again in Heaven, waiting with her Heavenly Father for us, her earthly parents, to join her.

I know I will mourn her loss. I already am. I know I will miss her. I already do. I know I will wish she was here with me a little longer. I already do. But I also feel joy and peace in abundance. I am amazed at God’s grace and comfort once again. I am awed by His goodness in such a trying time. I know He is faithful and will continue to help us heal and grow as time goes on without our little baby girl.

I also know there are a lot of people mourning with us. I want you to know God’s grace and comfort as much as we do. God is amazingly good and gracious. Please let Him be that for you. Please don’t let this time with Caroline harden your heart, make you question God’s goodness or His plans for you or us. Caroline isn’t here with us on earth, but she’ll be waiting for us in Heaven. We don't mourn without hope, because as sad as our earthly loss is, our Heavenly gain is infinitely more than all we could hope for. I want you all to see her there. Make sure you’re going to be there too. Email me if you have questions about that.

God has provided so much during the past few days. He has worked things out I didn’t even know needed working out. He has orchestrated things to make them happen in the best way possible. I laughed a little bit when I realized my last blog post was entitled “I want the best.” God probably smiled a little bit when He saw me writing it. He knew what was coming and said, “I’m giving it to you.” I am so glad I serve such a kind and loving God. He knew what I needed, what I could handle, and who I needed around me. He gave me everything I needed.

Thank you to everyone who has supported us, loved us, and prayed for us during this whole process. I know we’ll still need it in the coming weeks and months, but I appreciate and treasure all of it so far as well. This blog is not done, either. I’m sure I will keep writing for a long time.


I’d like to share some pictures of our dear sweet Caroline, and of her with us. I hope you can treasure them as much as I do.



Monday, December 12, 2011

I want the best

I go through stages with Caroline's condition. Sometimes I feel overwhelmed by it, sometimes I can almost ignore that it's there, and sometimes I'm somewhere in between. Through it all, it seems like God meets me where I am and that He teaches me some lesson no matter what I'm feeling. Some I can share via this public domain, and some are a bit more personal. I'm still amazed at God's goodness in gently teaching me these lessons. He's not mean, He doesn't brow beat me or treat me like the idiot I can sometimes be. He'll even patiently re-teach me a lesson I didn't quite grasp the first time...or second...or however many times.

This week has definitely been full of lessons. I'm still trying to process them all. But I am still grateful for them.

This whole situation with Caroline has been humbling beyond words. It hasn't really been an optional thing, either. I have, in a way, had humility forced on me, however lovingly and gently. I could have rebelled, of course, and held on to my pride and arrogance, but it wouldn't have been easy or helpful. And yet, I've done just that in some areas of my life.

When it comes to Caroline, I'm pretty much at the bottom of the food chain, willingly. I know I'm powerless to do anything to change our circumstance. I know she's in God's hands, not my own. I know she was never "mine," but on loan from God. I trust that God will either heal her here on earth and let my loan last a little longer, or He will let her be whole and perfect in Heaven and heal me here on earth from the pain of her loss. It doesn't mean that my life is easy or that I don't struggle to have these mindsets, but for the most part, this is how I think of Caroline. I can't worry about tomorrow, because today is hard enough. I take it one day at a time. I don't really struggle as much to be humble in our situation with Caroline because I just can't...do anything. I have to rely on God. I have to focus on Him and His plan, or else I will go crazy with worry and doubt and fear. It's easy when you're at the end of yourself to give God the glory He deserves, to rely on Him for everything, to give yourself up completely to Him and His will.

It's not so easy when you still feel like "I've got this." When things are still "under control" and you aren't laid out flat by tragedy. When you feel like maybe, just maybe, you don't really need to bother God with this, because you can handle it.

Big. Fat. No.

This is a painful lesson I've had to learn this week. I am a very proud person by nature. I can be extremely selfish when push comes to shove. And although I love God and have learned so much about trusting Him these last couple months because of Caroline, there are still areas of my life where I have maintained control and told God to shove it. Ok, so maybe I haven't been so crude as that, but in a sneaky way I've maintained my grasp on things that I should have given to God long ago.

I haven't trusted Him in some of my other relationships. I haven't trusted him with some of my physical, tangible needs. I haven't trusted Him to take care of certain other things for me. I still struggle to trust Him in many other parts of my life. I like control. I like to be in charge.

I've allowed bitterness to seep in to certain areas of my life. I've allowed myself to justify sinful behavior because it's not as bad as it could be, or used to be, or in comparison to some other people I know. I've made lots of excuses, including my favorite, "It's just how I am."

After all I've been learning in our situation with Caroline, how could so many obvious blemishes on my character slip through? Easy...I'm human. And I have some very bad habits. I need to break them. I've told God this, and asked Him to help me. I can already see the fruit of those prayers, and I know for a fact it ain't my doing. It's amazing to see God work so quickly for those who are open and willing to kill off the old so new can come in. I don't feel guilty. I don't feel like the scum of the earth. I feel like God has gently tried to pry something dangerous out of my hands. I feel like He's trying to show me something better because He loves me. He knows that I will benefit from increased intimacy with Him.

I don't know what you're spiritual beliefs are as you read this blog. I know a lot of my friends and family read this blog to keep up with what's going on for Cameron and I as we walk this path, but I am also acutely aware that I have strangers, friends of friends, old friends I've lost touch with, and people with the same diagnosis of anencephaly looking for hope, all reading my blog as well. Many of my friends and family share my beliefs, at least the basic foundational core of Christianity. Some of you may not. For those of you who don't share my beliefs, my blog might be confusing, or frustrating, or obnoxious. It doesn't bother me to know that some people may not like reading my blog because of the overt Christian spiritual tone. I am who I am, and I'm confident in what I believe. I will say that if you read this blog and ever have questions about what I say, I have a contact tab on this blog so you can email me. I would love to hear from you. I don't think I'm better than anyone. I think Jesus is better than everyone, and loves more fully than anyone here on earth can. I love to share that.

I say all of that to preface this statement. I've been a believer for a long time, and I'm still learning how to die to myself so Christ can live in me. In some ways, I have grown callused to God's expectations of me. I've been "good enough," but haven't sought out what God truly has for me, in ALL areas of my life. God wants the best for me. I just want "good enough."

It may sound crazy for me to say that while I'm carrying a child with a fatal diagnosis. How can God's best for me possibly include such a great loss? Such great pain? I've asked that same question of God. In my prayers, I am often not very eloquent. A lot of times, I'm crying, and what I say to God really isn't all that decipherable to human ears. It's a good thing I have the Holy Spirit there to help me out, let God know what's up. And the fact that God knows everything I'm going to say before I ever utter an unintelligible word doesn't hurt either. Sometimes my prayers literally consist of me repeating over and over again, "Lord, I want to keep my baby. Please let me keep her. You know I want her, so please don't make me give her up yet." After several minutes of shameless begging, I force myself to say, "Not my will but yours be done." I want God to know that even though the deepest desire of my heart is that Caroline would be healed, and that I could keep her, I recognize that He's in charge, He'll make the decision, and I will accept it as best I can because He knows what's best. I've also confessed to Him that I'll need a lot of help if He chooses not to heal her. He knows me. He's got my back, even though I'm not perfect.

In the midst of those prayers, it's hard to think that His best for me could involve losing Caroline. But my ways are not His. He is not limited in His scope of vision like I am. He's not limited by time like I am. He doesn't have to wonder at the end result like I do. And He's way smarter than I am.

I don't know why He would allow this to happen. I don't know why He wouldn't heal her. I don't know why I'm in this position. I never wanted it. I didn't ask for it. But I do know that good is coming from it already, and I know it will continue to. If I wasn't going through this, I might still be a pleasantly complacent Christian, walking through life settling for "good enough" when God has "best" in mind.

This week has been full of reassuring peace. God has been close to me, walking with me through the hardest time of my life. There have still been moments of pain, moments of doubt, moments of fear, moments of frustration. I have still rebelled against some of what God is asking me to do. I don't like putting to death my natural inclinations so that I can grow more fully into a right-living follower of the one and only true eternal Savior. It's hard, it hurts sometimes, and I don't like admitting I'm wrong and need to be changed.

At least God is not deluded. He already knows the worst of me, just as He knows the best. He doesn't hold it against me, because Christ took the penalty. He only wants me to draw closer to Him, and He'll help me strip away the calluses one by one. And, friends, He is. This week, I think He stripped off more than one, but I'm glad my eyes are opened, the scales removed from them. I'm learning to more fully trust Him, love Him, and rely on Him. He's reassuring me that I am better off following Him down a hard path than following my own desires. He's showing me that my ways lead to death, and His to life.

I want life. I want the best. I don't want to settle anymore for "good enough." Will you join me?

Saturday, December 10, 2011

Comfort and Joy

So, it's Christmas time. There's a lot of Christmas-y stuff going on, and it's a time where most people tend to focus a lot on family and friends and all that. I've spent the last few days making goodies to give to friends. It's a fun time of year.

Amazingly, after my terrible week last week, this week has been significantly better. There have still been good days and bad days, but it's been better.

It's getting harder and harder to bend over to put on shoes or pick something up off the floor. My belly has gotten a lot bigger. I can feel Caroline moving around a good bit, as usual, but she's bigger and it's a different type of movement. She has decided her favorite spot is to be wedged up into my right side. I don't think she's terribly concerned about my comfort. Haha.

With all of these obvious reminders of Caroline, I'm a little surprised that things haven't been harder for me. In fact, I feel totally at peace about Caroline. Whether God decides to heal her here on earth or not, I'm going to enjoy this time right now. If God heals her, I would be incredibly disappointed if I spent all my time moping and being upset instead of enjoying my pregnancy. I will have wasted my whole pregnancy being sad, when I could have been joyful. If God doesn't heal her, I still don't want to spend all my time being upset. If this is all the time I have with her, I want it to be special, even if it isn't a typical pregnancy.

In some ways, I wonder if I'm going crazy to feel "normal" right now. I actually, this week, have had to remind myself occasionally that unless God heals her, I'm not going to get to keep Caroline. I have felt a little more like a normal mom-to-be this week. I think I needed that. It's been too long since I really felt at peace and comforted. And I can really say that I've been reminded of God's joy.

Especially in this season where joy is a major part of many songs, stories, and lessons taught, it's good to know that nothing can steal my joy. Nothing can steal my comfort, either. God has really placed a hedge of protection around me as I deal with this Christmas season. I was really afraid that I would be upset all this Christmas season because of Caroline's condition. But it's really not been that way yet. I'm not saying it won't be more difficult at some point, but so far, God has really comforted and sustained me. I'm focusing on all I do have, and not so much on what I might not get to keep.

I don't have any profound thoughts to share. I can only say that God is most definitely with me, and is giving me everything I need to deal with this. I know that things can change at the drop of a hat with me and how I'm feeling. I blame the hormones. Haha. But I take things a day at a time, and for today, I'm good. God is enough, and He is keeping me sane. I'm so glad I serve such a loving, amazing, comforting, big God.

It truly is a Merry Christmas. :)

Sunday, December 4, 2011

The Terrible, Horrible, No-good, Very Bad...week.

Alright, perhaps that's a little dramatic...but it was a tough week. Not all bad, mind you, but very tough. My prayer life got a lot of exercise this week.

I think part of it is because I had two appointments this week that left me drained. I had a hospice meeting on Monday and a sonogram on Tuesday. I've mentioned before that I feel an emotional "let down" after all my appointments. It's not a disappointment, but a release of all the pent up nervous energy that I have before an appointment. I have to gear myself up for every appointment. When they're over, all that extra protect-myself energy has to go somewhere, and it makes the days following appointments a little...blah. Recovering from that emotional let down is a little hard, and recovering from two this week I think just was a little harder.

I have also begun my third trimester. It's quite normal during your third trimester to start "nesting." That's the crazy urge to clean, organize, decorate, and basically just get ready for the baby to arrive. It's hormonal, psychological, etc, whatever. It happens. So this past week, I started feeling the need to nest. Except...I don't really have anything to really nest for, unless God does a miracle. I don't need to do a lot of the stuff that a normal mom-to-be would do while nesting. I'm not setting up a nursery, and while I can clean and organize and such, it's not for the sole purpose of making baby a nice home. I'm not shopping for clothes and toys that I have to bring home and make a place for. I'm not rearranging furniture to make room for baby furniture. I'm not even sure Caroline will get to come home at all, so I really...don't have much to do.

This has been extremely difficult for me. I want to be getting ready for Caroline. I want to be buying clothes and toys and small furniture and all that. I want to be making a place for her. I wish I could make a nursery. I can't help the feelings that come along with nesting. It's just how expectant mothers are wired. I can't turn it off. But while my hormonal emotions are telling me to get ready for a baby, my brain is telling me not to. It's just one more thing to accentuate Caroline's condition. I still hope and pray that things will change and I'll be running around like a chicken with my head cut off trying to get things together at the last minute because a future sonogram reveals a miracle, or after we get home from the hospital because she was born healthy inexplicably. That will be happy chaos. I'm down with that. But in the meantime, I can't/don't want to act a whole lot on my nesting emotions.

I've also had a tense week inter-personally. Because I'm dealing with a lot emotionally this week, a lot of my interactions with people have been strained, especially if they're close enough to me to be dealing personally with Caroline's diagnosis as well. It's nothing irreparable, just tense. And not very pleasant. It's been hard to go through the week like that. I have felt a little bit alone this week, despite all the support I have. I have had to pray A LOT for grace to sustain me. I would not have made it through this week otherwise. I still feel like I was beat up this week emotionally. I am exhausted. I have felt stretched very thin, and I haven't known what to do about it. This is one of those times where I feel like I am completely and totally at the end of myself. I have nothing left to offer. I am just done. I have done what I can this week to make things better, and really, I can't do anything. This is just a trying time where I have to rely on Christ to carry me, which I know He's doing, whether I realize it at the time or not. With everything I'm dealing with right now, I'm reminded of something my mom and I kind of joke about, but which has a practical meaning.

I'm a duck.

Yes, I just said that. Haha.

Ducks have some sort of oily substance on their feathers and such so that water can just roll off their backs. They can swim and dive and not get waterlogged because this oily substance kind of keeps them dry. When it comes to difficult situations, my mom has always said to be a duck. Let the negative stuff roll off your back like water rolls off a duck's back. Whether it's unkind or distasteful words, or if it's things beyond our control, or whatever it is that can tend to bog us down, we need to let it roll off our backs. It's sometimes very difficult to do. I'm not usually very good at it. This week was no exception. In some ways, I have let everything going on bog me down. I've still tried my best to keep my focus where it should be, but this has just been a hard week. I'm still working on being a duck.

The good thing is, even though I have felt alone this week, I haven't been. God's been right there with me, even when I've messed up, or felt hopeless, or felt injured. The battle against a feeling of futility when it comes to a miracle, and the battle of feeling helpless when it comes to interpersonal relations, and the feeling of despair from letting our situation cloak me in misery...it all very strongly presented itself this week. Every weakness I have was preyed upon. Every insecurity I have was prodded out of me. Every coping mechanism I have has been tested. And yet I am not defeated, even if I feel like it at the moment. I know I'm not. I can hold on to the certainty that I am not alone, I am not abandoned, and I am not overwhelmed because I have a Savior who saved me once and for all on the cross, and who continues to rescue me from myself, my situation, my emotions, and anything else that tries to defeat me.

I put out my Nativity this week.
It's a Willow Tree set, and I've had it for a few years now. I've always put it out, and I always will. It's a representation of Christ coming to earth to be my Savior. But this year, as I mentioned in another post (Christmas Spirit), I really had a much stronger emotional reaction to it than ever before. I can't even really explain it. There's a yearning for something better, and a gratitude beyond this world, and a peacefulness that is beyond my understanding. It's not a special magic in the actual figures. There's nothing in those figurines that gives them special power. The change is in me, and caused by the true Savior that came. Every time I look at that set of figurines, it calls up a multitude of emotions, and I'm not even sure what they all are. But I do know this...It's helped me make it through this week. The constant reminder that God loved me enough to send His Son, and that His Son left behind the Holy Spirit to be my Guide...it's almost too much for me. Not only that, but He also came so humbly. It's just amazing to me. I can't really put it into words.

So as I muddle through the more difficult days, I'm glad I have this reminder. I still struggle. I don't always respond the way I should. I don't always say the right things or do the right things. I sometimes let the chaos overwhelm me. But I always have a Savior who extends grace to me in my weakness, who holds me up when I fall, who gently leads me back to where I should go every time I wander, who will work everything out for me at some point. I'm so grateful He's there. I'm so grateful He gives me grace. I'm so glad He loves me that much, and that I can rely on Him when I'm just done.

My terrible, horrible, no-good, very bad week is a little better just because He's there. Thank you, Lord.

Thursday, December 1, 2011

Christmas Spirit

Today has been interesting. A couple days ago we put up our Christmas tree and decorated it. Until today, I hadn't done anything else to decorate for Christmas. For whatever reason, I didn't really feel like it.

Today, I put my Nativity set up, put a wreath on the front door, and I put a festive runner and some other decorations on my dining room table. I feel very accomplished today (partly because I also cleaned while I decorated...).

So, my house is starting to look more Christmasy, and I have mixed emotions about it. If God doesn't perform a healing miracle for Caroline, this will be her only Christmas. I'm still including her in as much as I can. Our Christmas cards will have her name along with Cameron's and mine. We're going to get her a stocking to hang up with ours. We bought her some "first Christmas" ornaments

(Cameron and I both picked one out). And I'm so happy we're doing all of that.

It just hurts to think this may be the only time we get to do anything "with" her for Christmas.

Before diagnosis, I was looking forward to Christmas because we would have a registry of baby stuff and would probably get some of it for Christmas. I would probably be starting to put together Caroline's nursery. We would have fun talking about next Christmas and how much fun Caroline would have opening presents. I had it all worked out in my head. Of course I didn't know for sure what all of that would look like in actuality, but it was fun to daydream.

Now this Christmas is bittersweet. We can rejoice that we get to spend it with Caroline, and hope and pray that we still get to have her next year. But we won't really be getting any fun baby stuff for Christmas. We won't be preparing a nursery. We won't be talking about next Christmas. It's a little hard to think about, so that's probably why I haven't been too much in the Christmas spirit yet.

Something sweet did happen today though. I pulled out my Nativity set and put it out. I've been a believer most of my life, and my family is very faithful as well. We've always had a Nativity set out at Christmas. We've always made sure that the real Christmas story was part of our celebrating. And while I've always appreciated it, this year, it was a little more special to me.

I don't know why, but as I pulled out my figures of Mary, Joseph, Jesus, and a couple other characters, I felt as if I was able to see for the first time the real Christmas story. They were real people. They weren't just characters in a story or actors on a stage. Mary was a very young woman, having her first child, knowing she would eventually lose him. I wonder how she felt on that first Christmas, giving birth to the child they named Jesus, knowing He was God and knowing He would die to save the world. Don't forget that they were also afraid that the king, Herod, would kill Jesus, and were warned by angels to flee the area. Mary gave birth in a stable, surrounded my animals. I just can't imagine. In a lot of ways, Mary and Jesus had it a lot worse than me.

I'll give birth in a clean hospital, with lots of support from my family and the medical professionals I've been working with. Unless God heals her, I also know Caroline won't have long on this earth. I'll know she won't have to suffer like Jesus did. I won't have to run for my life from someone trying to kill me or my child. I'll know that she's going right to Jesus.

I still ask God to heal Caroline. I still believe He could. I also have to accept that He might not. So...Christmas is a little weird for me this year. I am so grateful for Jesus coming down to earth, for dying for me, raising himself from the dead so we won't be defeated by death any longer. I am so grateful that because He did that, I now have free access to God through the Holy Spirit, who has been walking right alongside me this whole time, comforting me and sustaining me. I'm so grateful that I know earthly death is not the end for Caroline or for me, but that we will exist eternally together in God's presence. I also hurt when I think about Caroline going to that eternity before me. My heart aches that I might not get another Christmas with her. So many mixed emotions.

Just as in everything, I know God will sustain me through this season. I know He will give me the strength to endure whatever comes. I hope that He will give me "my" miracle, but I also hope that I can glorify Him no matter what happens. This is tough. This holiday season will be tough. I can already feel how challenging it will be lean on the Lord and not be overcome by sadness or hopelessness, but I also know my prayers for Him to help me through it will be answered. I want to focus on the Gift He gave us through His birth, death, and resurrection, not on my own possible loss or pain.

I know there will be tears this Christmas. I know I will hurt. But I also know God is bigger than that, and that He loves me enough to meet me where I am. That's the real Christmas spirit...being surrounded by the love of Christ.

I'm so glad God took the time to remind me what's really important this Christmas. It's not about me, or my family, or Caroline. It's not about pretty decorations or cookies or anything else we tend to do at Christmas. It's about the Son of God, who humbled Himself to come to earth for our sakes, so we would know how much He loves us.

Oh, how He loves us.

Tuesday, November 29, 2011

Amazed

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

Sigh

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

Thanksgiving

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

Frazzled

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.