A pumpkin memory

Today we carved a pumpkin "with" Caroline. It's one of the memories we wanted to share with her just in case this is her only chance to experience some things. I decided to make her pumpkin a little special. No boring smiley faced jack-o-lanterns for our girl. Haha.

As I was cleaning out the inside of the pumpkin (which I don't really like to do, by the way), I thought about how I would let her touch the slimy grossness inside the pumpkin just to see what she would do. Haha. I finally got all the gunk out. Whew.

I debated what I wanted to carve for Caroline's pumpkin. It's hard for me these days to make some decisions about what I'd like to do "with" Caroline. I just hate that I might only have one chance, so I try really hard to make it good. I went back and forth a lot about her pumpkin. But I decided on this when it came down to it.

She's my little angel, regardless the outcome of her life. And she's shining a light even now, so I figured this was appropriate. Here's a few pictures of the process.

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Cameron joined the fun too. He took on the role of cameraman most of the time, but he did carve a pumpkin too. This was his. :) He was very proud.

Haha. He was going to carve "Happy Halloween" into his pumpkin. After he got "happy" done, he decided "Halloween" would take too long, so he just wrote "boo" instead.

Happy Boo indeed. Haha.

I really enjoyed sharing this time with Caroline. I know it may seem strange to think of her as being here with us making memories, but that's ok. It means a lot to me. I mean, really, most kids don't really "remember" the early years of their lives anyway. We make memories for them, more for our sake than theirs. So I guess that's kinda how I feel about it with Caroline.

I do still hope and pray that we'll get to make memories with her later, too, but in case that's not God's plan, I'm going to keep doing things "with" her anyway. I'm glad God has given me this time with her, and I'll keep treasuring the "memories" as we go.

Hope

So you know how I said a few posts ago that God gives me lessons in bits and pieces so I can digest them? Yeah...he gave me another one today. Did I also mention his lessons are sometimes hard to swallow? I did? Ok. Par for the course then.

This scripture passage was part of my pastor's sermon today. His message wasn't really about this particularly...he was using it as a lead in to some other things. But this bit stayed with me. I've heard this Scripture about a million times, and I've always liked it. But this time, I got something new out of it because of the perspective I have right now. Without further ado..

"Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, through whom we have gained access by faith into this grace in which we now stand. And we rejoice in the hope of the glory of God. 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 5:1-5

I've been really struggling this week with the idea of hope. Really struggling. I don't know if I'm just drained from the emotional difficulties of our situation, or if I'm lacking faith, or if other people's doubts are starting to wear on me. Whatever it is, I've really been inspecting my heart, and what it's hoping for, this week. I've begun to wonder if I really am crazy, if I'm living in denial of reality, if I'm trying to manipulate God to do what I want. Or maybe God has truly given me a peace because he is going to give me what I want. I don't know. This scripture came at a perfect time, as usual. God is cool like that.

I realized today that hope is a wonderful thing, but it has to be in the right place. In this passage, it starts out letting us know where our faith comes from-through grace, through our justification through Christ. Done. No question. Then it goes on to say "we rejoice in the hope of the glory of God." Arrow. through. heart. That shows where our hope should lie...in the glory of God-our secure future through him. All our hope should be wrapped up in wanting to see God glorified in our lives. Not in what he can do for me. Not in what I want him to do for me. But in his glory.

The next verse is one that a lot of people have probably heard. "Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope." Ok, so it's obvious we're "suffering" right now through this situation with Caroline. Living through this is definitely teaching me perseverance and character. And yes, hope. But I think over the last week or so my priorities have been slightly skewed. My hope has been slightly misplaced. I've been struggling with how to hope for healing for Caroline and still not be "disappointed" if he chooses not to perform that particular miracle.

I think I figured out my problem, thanks to God's revealing it to me. "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." My hope shouldn't disappoint me. This verse says so. Wanna know why? Because my hope should be in the glory of God, nothing else. And if my hope is in the right place, then I won't be disappointed. He already loves me, and proves it by giving me the Holy Spirit. So if I focus my hope on God being glorified, not on a miracle, not on an action, not on a desire, and if I rely on the Holy Spirit to show me God's love because of the hope I have for my future with him, I won't be disappointed. And I'll have peace.

God is asking a lot of me to place my hope in his glory, instead of anywhere else. It's hard not to hope in a miracle. I don't think it's wrong of me to continue asking. And I will keep asking. And I will keep praying that God's will would be done, even when that is extremely difficult and I have to confess to God that sometimes I don't entirely mean it. All of the lessons God is teaching me these days pretty much point to one thing; God will be, and must be, glorified. He must be all important. He must be my first priority. He must be loved the most of everyone I love. And for me to be as close to him as I can be as a human being, and for me to truly rely on him as my Lord, and for me to truly understand and feel his grace and peace, I have to voluntarily put him there. He's not going to force me.

I'm not strong enough to do this. At all.

When I really came to these conclusions today, my heart hurt. I knew what God was asking of me, and I didn't want to do it. I still don't want to do it, even after several hours of meditating on this idea. Even though I know God may not give Caroline a healing miracle so we can keep her with us here on earth, that belief that he can, and COULD, do it, is part of what has kept me going. Not because he is all powerful, and I'm giving him the glory for it, but because I want to keep my baby. In some ways, I've been placing my hope in the miracle, not the miracle worker. And I didn't even realize it was happening. I absolutely still believe and have faith that he can, that he has the ability, to heal Caroline. And I still hope that he will. But today has brought a new depth to my understanding of hope. My hope must be firmly rooted in God's glory. Not a specific action, not a specific idea, not in a limited scope of what I think should happen, or could happen. Rather, it has to be in the one who already knows what will happen, who can never disappoint me. The glory he must receive.

Like I said, this is not something I am strong enough to do. It's going to take a lot of supernatural help, and a lot of time on my knees. It's going to take a lot of tearful submission. But I know in the end, this is the best thing I can do. I can't be disappointed in this situation if my focus is on God getting glory, no matter the outcome of our situation. He WILL be glorified, even if we lose Caroline here on earth. He'll be glorified if he heals her. He'll get the glory if there is some other outcome I haven't even imagined yet. His plan will give him glory.

I needed this reminder.

God loves me, and his Holy Spirit is given to me to prove it. He doesn't want me to be disappointed. He wants me to be able to rejoice in the hope of his glory. It is so reassuring that I can indeed have his peace in the midst of the uncertainty we're facing with Caroline.

I won't stop asking and hoping that God would perform a miracle for us; a specific miracle that I particularly want. I can't stop asking for that. But I know now that I don't have to fear disappointment if his answer isn't the one I want, if I ask for his help to maintain the correct focus. I know I'm human. I know this is going to be one of the most challenging things I have ever done. I know I will fail miserably over and over again. But I know God's grace will cover me. I know God's love will sustain me. I know he'll help me, if I just ask him. So that's what I'm going to try to do. I will do my best to honor him this way. And hopefully he can use my imperfect efforts for his glory.

I will rejoice in the hope of the glory of God. With lots and lots of help from him.

People

When we first got Caroline's diagnosis, I didn't think about much. I just existed and tried to force myself to function as well as I could. But I knew in the back of my mind that we'd get an outpouring of sympathy and support. I have great friends and family.

When the initial shock faded a bit, I started thinking about how much people were supporting me. It really quite humbled me, and made me feel incredibly blessed.

Here's why: I have a confession to make. I severely sell myself short when it comes to other people. I love to serve, I love to give of myself, I love to have friends, I love to do what I can for people. But I don't think about how others look at me, or how they respond to me. At least not much. In some ways, I have become "self-sufficient," and that can sometimes lead me to be...doubtful of other people's care for me. To clarify...I'm somewhat insecure about whether people care about me in return. There are some people I KNOW care. They prove it all the time. There are others who I'm not so sure about. It doesn't mean people don't care...it means I have issues trusting that they do.

This experience with Caroline has taught me A LOT about how much people care. It's also taught me not to wait for tragedy to strike to show others I care. I don't want people to wonder about me. I want them to know I care. But I digress.

It has now been three weeks since we got Caroline's diagnosis. It feels much longer to me. Much, much longer. Because it feels like it's been forever to me, every once in a while, I start to think that the outpouring of faith and love toward us is going to start fading. People are going to move on with their lives and "forget" about us and what we're dealing with because they have their own stuff to do. I keep steeling myself for that loss of support. I keep thinking that it's only a matter of time.

And I keep being proved wrong.

I actually have tears pooling in my eyes as I write this. Not only is this whole thing with Caroline strengthening my own faith with God, teaching me to trust him and rely on him whole-heartedly, but it's also teaching me that he uses his people a lot more than I give him credit for.

I have lived through some situations where people have hurt me dearly. They weren't strangers or acquaintances, or even people I didn't care for. They were people relatively close to me who I trusted and thought well of. Everyone has times like that. I have been blessed that I didn't let those times sour me toward God to the point where I lost my faith entirely. I've seen that happen in people going through similar circumstances. But it did throw me into a valley spiritually. It's only been in the past year or so that I've been able to really start to heal from some of those hurts, and they happened several years ago now. So I guess what I mean is that I'm slow to trust people, and I look for people to mess up.

I'm a great example of what NOT to do. Haha.

Through this trial, I realize that people are much more willing to follow God's lead than I give them credit for. They're a lot more willing to put themselves out there than I thought. And they're a lot more consistent than I ever imagined.

It seems like on the days I'm really struggling with this insecurity, God prompts people to show me that they care. I get an influx of email or messages or cards in the mail. God keeps proving me wrong about my thoughts towards other people.

I just want to say that while people are my secondary source of comfort right now, with God being my first, they are also slightly more tangible sources of comfort. God comforts the deepest parts of me, in my spirit and soul, giving me supernatural peace. The wonderful people around me give me hugs to feel, and cards to look at, and flowers to smell. I can't rely on the people around me to comfort what only God can reach, but I also know that he has placed these people in my life. He knows I need the stuff I can feel and see, too. That's why he wants us to live in community with each other...earth is hard, and people showing care and concern can really help us grow toward the Lord.

So after this terribly rambling post, I want to say thank you. Thank you to everyone that hasn't forgotten us in the busy-ness of life. Thank you to those who have given us tangible evidence that you care. Thank you to those who have continued sending kind words to us through email, snail mail, facebook, blog comments, or phone calls. Thank you especially to those of you who keep praying for us. Thank you all for letting God use you to comfort and sustain us in a very trying time. You will never know how much it means to us to be loved, supported, and held up in prayer by people who care.

I have had a lot of comments that God is working in our situation and our lives to glorify himself. He's showing himself in our faith, and in how we're dealing with this. I'm so glad he's getting the glory, and I hope we can continue to shine for him in a dark time. But I want you to know something...

God is working and being glorified through you too.

So thank you. To God be the glory.

In a World of Crazy

Let's just say I feel a little crazy these days. It's kinda like walking through quicksand, while watching a ping pong game, while having an out-of-body experience.

I guess I should explain that, huh?

Thursday will be the three week mark of getting Caroline's diagnosis. Three. Weeks. That's it. It feels like I've lived an entire lifetime in these three weeks. Walking through quicksand. I take one step at a time, because it's all I can do. And it seems like it's taking forever. Time has become this weird, surreal entity. I still live within the limits of time, but time doesn't seem the same anymore. I feel like time is suspended at the same time it keeps trudging forward. It's just...odd. I can't really explain it.

Then there's the constant back and forth. Ping pong game. Joy, pain, faith, doubt, grace, fear. In a single day I probably have more emotions than I would typically have in a month. It's exhausting. I've mentioned before the constant tension I feel between Caroline's two possibilities, as I call them. Healing miracle or nature's course. To go along with that are emotions. If I focus too much on the miracle, I begin to wonder if I'm setting myself up for disappointment if that's not what God has planned for us. Then I feel bad because I wonder if I'm lacking faith. And around and around it goes. Then, if I focus too much on the medical "certainty," I'm wondering if I have enough faith, then I feel like I'm justified because I have to guard my heart against the possible disappointment. You see what I mean? Ping. Pong. Back and forth, round and round, constant tension. I can't give up either option for now, because we don't know what God is going to do. But it's a constant battle.

As I'm going through this, I know God is carrying me. There is no way I could be doing this on my own. His love sustains me, and his grace covers me. I seriously sometimes feel like I'm watching myself experience this, not going through it myself. Out-of-body experience. I still FEEL everything, but as I "watch" myself handle this situation, I wonder who this person is. This person suffering with patience and grace, hoping in a miracle most people would say is impossible...it can't be me. It's not like me. Oh wait...it's not me. It's God with me, carrying me through. If nothing else comes from this experience, I KNOW that my faith has been strengthened. God has "proven" himself to be faithful to me beyond a shadow of a doubt, and my faith and trust in him has so much more substance. It's been tested and tried, and refined in the fire. That doesn't mean I'm perfect, or handling things perfectly. Far from it. But in the moments I choose to rely on my Father, things go well.

There are other things going on too. I want to be able to trust the medical professionals around me. And as far as I know, all the ones I've dealt with thus far have been trustworthy. But...I know the Great Physician. And what He says goes, even if it's contrary to common medical proof. But here's the thing...I sometimes wonder how much the medical profession really knows about this disorder. Cameron has been an information hound through this whole process. I've already shared that anencephaly occurs in about 1 in 1000 pregnancies. I recently found out, through Cameron's research, that 90-98% of those pregnancies are terminated. So that means roughly 1 in 10,000 pregnancies involving anencephaly are continued. 1 in TEN THOUSAND. Of the continued pregnancies, about half are lost through miscarriage or pre-term labor. That means only about 1 in 20,000 are carried near or to full term. That's...really not very many. And from the personal anecdotes we've found online, it seems the severity of each case differs, sometimes dramatically. I'm not saying any medical professional is intentionally muddying the waters. But if any disorder is as rare as anencephaly, how much can you really know? It just makes me wonder, that's all. It makes me wonder how long my baby Caroline could survive even if she isn't healed miraculously. We've been told hours or a few days, but we really don't know. At all. It's what makes my hope and faith all the more important to me.

Then there's the physical paranoia. This is probably the most obnoxious thing to me right now. I'm a first time mom as it is, so I don't know what's "normal" for me during pregnancy. Add in that I am now considered high risk, with a chance of pre-term labor, and everything I'm unsure about is magnified. Every twitch, pain, pull, ache, or twinge is analyzed and fretted over, wondering if everything is ok. I hate that I do this, but I can't help it. When I start to freak myself out, I just have to remember that God knows the timing for little Caroline, and he'll be there for me no matter what. It's not easy, but when I pray that God would help me, he does. It doesn't mean I completely stop worrying all the time, but the worry doesn't consume or overwhelm me like it otherwise would.

The last thing I want to discuss is how other people are thinking about our situation. I have a lot of friends and family that are incredibly supportive. They encourage me, lift me up in prayer, and remind me that miracles can happen. And they truly believe it. It's not a nice platitude to try to make me feel better. They really, truly believe it. They also realize, like we do, that it might not happen, but it doesn't change their faith that it COULD.

Then there are others, who although good intentioned, I sometimes feel like are "humoring me." They kinda seem like they think I'm a little crazy for ACTUALLY believing Caroline could be miraculously healed. It doesn't really bother me when people come across this way. It hurts a little, mostly because I want them to experience the depth of love and and grace I feel from my Heavenly Father, the KNOWING that God is powerful and ruler over everything. These people are still supportive and kind, I just wonder if they think I'm a bit off in the head sometimes.

Cameron has had some strangers straight up tell him that he's brainwashed, crazy, and delusional for believing we could get the miracle we're praying for. They don't believe as we do, and I understand why they feel that way, even though I don't agree with them. To people who don't believe in our God like we do, for people who believe that the medical inevitability is, in fact, inevitable, we are crazy. I'm ok with that. 1 Corinthians 1 basically says that will happen. Verses 18-31 talk about this, but I think verse 25 sums it up pretty well: "For the foolishness of God is wiser than human wisdom, and the weakness of God is stronger than human strength." In the end, it doesn't matter what other people think about us. It matters what God thinks of us. I hope he can look down on us and say we're doing a good job, honoring him with our words and actions, showing true faith in a difficult earthly situation.

Because here's the thing...this isn't the end. Life on earth is like a vapor, as Scripture says. We're here a short time, then comes eternity. As long as we can grasp that, as hard as it is, then things like this get a little easier. Knowing God's in charge, knowing he has our best interest at heart, knowing when we get to Heaven this will seem inconsequential compared to the glory we share with Christ...it makes all of this fall into God's perspective.

So if you think I'm crazy for handling this the way I am, for hoping like I do, for defending my faith as I am, then ok. I may feel a little crazy right now, but I know I'm not. I want to be wise in God's eyes. The eyes on earth are limited and the wisdom of human beings is foolishness. When I start to lean on my own understanding, or on the world's expectations in this situation, hope is lost and faith is weakened. When I rely on the truth of God, and seek to be wise as he is wise, hope flourishes and faith grows. I want the second version.

I'm ok feeling a little crazy. It makes it easier to rely on God, easier to hope in the future. And easier to see God's glory.

Honesty

In all of this journey, I am trying my best to be open and honest. It is only through that honesty that my story can be told correctly, and hopefully God will get the glory.

So...in an effort to be honest, I should say some things.

I have gotten a lot of comments, messages, etc in response to our situation. It's pretty amazing to me how people can care so much for us. A common thread through most of the comments is that people think I am strong, brave, and have amazing faith.

Ha. Haha. Hahahahaha. Oh my. How I wish I was all those things.

I'm not trying to offend anyone that has said something like that to me. Really. But I have to be honest...I do not feel like any of those words describe me. I feel so weak, so afraid, and so lacking in my faith. I must honestly confess that without Jesus, I am pretty much a worthless pile of crazy worried nutcase. A nutcase that wonders how I'm getting through this. And there is one answer.

Grace. Lots and lots of grace. From Jesus.

I must give credit to Him for getting me through this. It is only through his grace that I can endure the never-ending uncertainty and fear. It is only through his mercy that I can live with other people unknowingly saying really stupid things to me that have the tendency to either make me really angry or really defeated. It is only through his love that I can look to the future with hope instead of despair.

It truly is all because of Him. The longer we deal with this situation, the harder it gets to rest in God's grace and peace. It's hard to know that you can't do a dang thing to save your daughter. It's hard to know that you have to rely 100% on God to get through the day. It's hard to feel so utterly helpless.

In all of this, God is carrying me. Literally carrying me. I am not walking this path on my own...God has scooped me up and is lovingly carrying me where I have to go, regardless what the end result will end up being.

So in response to people who think I'm "handling" this well...thank you. You flatter me. But I must set you straight. Haha. God is handling this, not me. I'm just doing my best to let him. I'm doing my best to trust that he's got this. It's hard. I fail, a lot. I doubt, I question, I wonder, I get angry, I get flustered, I get sad. But his grace covers me. Oh, praise Jesus that his grace covers me, and that he is loving, kind, and merciful to me. Thank the Lord that he carries me when I am too weak to walk on my own.

Whatever good is in me, it is Jesus working through me. I hope when you see "my" strength, poise, faith, and courage, that you would instead see that my Jesus is carrying me and giving me the ability to function as he handles things for me. Thank you all for your kind words, prayers, and encouragement. It helps so much, really and truly. I'm truly not trying to belittle or trivialize the kind words people are giving me, but I must point to the source of my strength. So thank you, and to God be the glory.

Memories

As Cameron and I walk through this challenging time, we are trying to live with a good perspective. It's not always easy, but we think it's worth it.

I also have an amazing mother who is one of the most wonderful supporters I have ever had. She has been invaluable to me during this whole process. I'm not sure how I would have gotten through the past couple weeks without her love and listening ear. She was able to fly in from halfway across the country to be with me this week, and it was such a great time.

Before she came, she shared with me that in some of her reading about families dealing with anencephaly, she came across the idea of making memories with the baby before they were born, since most can't survive long enough to make many memories after their born. As an aside, my mom is an amazing mom. She has always been a great mom, and a fun mom. She has one grandchild so far besides Caroline, my sister's little girl, and she is an awesome grandmother too. Her grandma name is "Honey." Honey is one of my niece's favorite people. She's fun and loving and makes time spent with her great.

My mom loves doting on her kids and grandkid. So she wanted to spread the love to little Caroline, doing all the things she would want to do with her if we get our miracle and she is able to do things with us later in life. If this is our only chance, then we're just going to share all the fun stuff with her now, even if she can't really do any of it. We're going to make the memories with her now anyway, even if it's just so that when she's gone we can say we did things with her. It will be a comfort to us if we don't get our earthly miracle.

My mom came with a list. Haha. She was a woman on a mission, and it was so much fun. We didn't get to everything on the list, but hopefully next time I see her we can do some more stuff with Caroline and finish her list out. I'm sure she'll come up with other things too. Haha.

We went outside and blew bubbles (it was so windy, and so cold, but so worth it).

That's something she and I would both definitely do with Caroline if we get to keep her here on earth.

We drew with sidewalk chalk on our driveway. Caroline couldn't make her own pictures yet, but we made some for her, of stuff we think she'd want to draw if she gets to stay here for a while. We also wrote messages to people she loves, and from people who love her.

We wanted to play with sparklers (you know those sticks of sparking light you get at the 4th of July and New years?), but it's not really the time of year for them. They were really hard to find, and we weren't able to get any, so we improvised and got glow-in-the-dark wands instead.

We laughed so hard. Cameron was being totally goofy, as I'm sure he would be with Caroline, making her laugh and want to "play" too. We wrote her name in the air in light and prayed for our miracle, so we could do this with her some day.

A big thing in my family is banana pudding. It's one of my dad's favorite desserts, so we've all made it with my mom at some point in time. I'm sure if Caroline gets to stay with us, "Honey" will help her make it someday so "Pi" (my dad's grandpa name, pronounced pie...don't ask) can have some, made with love from his little Caroline. Mom decided we could put her initials on top with the vanilla wafers to commemorate her "first" banana pudding adventure.

I hope she enjoyed her first taste of pudding, even if it did come through me first. Haha.

Some of the other things Honey wanted to do with Caroline was to share some of the things no little girl should live without. So we got chocolate ice cream and popsicles so she could know what a treat they are, and get to enjoy them (at least through me). If she gets to stay here with us, I'm sure she'll have fun experiencing those for the first time, whenever that time comes.

We got pumpkins to carve, but weren't able to get them carved before Honey left to go home, so Cameron and I will just have to show her how that's done later. Carving pumpkins is too neat not to share with her.

One of the last things we did while my mom was here was go shopping. Obviously, Honey would take Caroline shopping if she gets to stay with us, so we had to show her what it's like in case she can't stay. Cameron went with us and was such a good sport. Haha. I'm sure he would be with Caroline too.

We bought Caroline her first Christmas ornaments, in case this is the only one she gets to spend with us. There is a Christmas store at our mall, so we were able to find some cute ones. We also got her a really pretty dress to wear. If she's only with us a short time, or gets to stay for a while, it will be her first photo shoot dress. Either way, I'm sure she'll be beautiful in it, and it's one thing we'll get to do after she's born. We looked around for quite a while to find just the right outfit, and I think we found the perfect one.

Doing all of this was such a blessing. I know it meant a lot to my mom to be able to spend time with her grandbaby, and I know she wishes she could do more with us. It was a wonderful time for me, too, to have my mom here with me, doing "normal" things we would do with Caroline. It still hurts everyday to think I won't get to do any of that with her after she's born, unless God gives us our earthly miracle, but doing it with her right now makes it just a little easier. My mom was such a comfort to me while she was here, just as she has been and will be at a distance.

I will admit that doing all of this was painful at times. I cried a few times while we were shopping. I really want her to be able to do all of this when she's old enough to remember, when we can have pictures of all her firsts, make memories with her, not for her. It hurts, a lot, to think we might not get that opportunity.

But just as in everything, God is good. He gave us joy with the pain, peace with the uncertainty, comfort with the tears. I will continue praying for grace, peace, and comfort as we go through this, all the while asking for our miracle.

Thank you Jesus for giving me such a great Mama, and for giving Caroline such a great Honey. And thank you, Mom, for being here for me, even as you suffer with me. I love you.

I want to be worthy

This week has been such a blessing. My mom was able to come in from out of town for several days and make some memories with Caroline and me. I'll share more about all that in another post. But it's also been a time of reflection and growth for me as well. Being able to talk to my mom in person about what's on my mind has been awesome. So I'd like to share a few of my thoughts from this week.

"Anyone who loves their father or mother more than me is not worthy of me; anyone who loves their son or daughter more than me is not worthy of me. Whoever does not take up their cross and follow me is not worthy of me. Whoever finds their life will lose it, and whoever loses their life for my sake will find it." - Matthew 10:37-39

As we go through this whole crazy situation, God is revealing things to me in bits and pieces, as I can manage to digest them. Even in his teaching moments he is gracious towards me. This passage of Scripture is one that God used this week to teach me another lesson. A tough lesson, but one I needed to learn. Reading it, you can probably tell pretty much what I got out of it. This Scripture doesn't leave a whole lot of room for discussion, at least to me it doesn't.

I love my daughter. A lot. Even though I haven't seen her in person or "met" her, I love her. Any child that is growing in a loving mother is going to be loved from the time it's known he or she exists. That's definitely true. In our situation, the chance/probability that we will lose Caroline has, amazingly, made me love her even more. I guess that old cliche, "You don't know what you've got till it's gone," could be considered true in our case. The thought of losing Caroline makes me want to hold on to her even more tightly while I still have her. Whereas before we got her diagnosis I was careful but not really anxious about pregnancy issues, now I am not only careful, but tend to fight anxiety. Any twinge I feel makes me worry that something is going wrong, even if it's completely normal. I'm sure that's a natural reaction to have in a situation like ours, but it's quite exhausting. I have to give those worries to the Lord constantly so I don't drive myself crazy. But it just illustrates how fragile all life is on this earth, and that I am clinging very tightly to the little life growing inside me.

I guess God wanted to make sure Caroline was not becoming an idol, or a distraction, or a stumbling block in my life. Even as I am trying my best to rely on God for grace, comfort, and strength, I still have my moments of disbelief, and of lacking faith. I still struggle with the thought that Jesus knows what's best for me and Caroline, and trusting that no matter what happens, he's in control. It's hard for me to understand why taking my little girl to Heaven before I get to know her is possibly the best thing for me. I don't understand God's thought process a lot of the time. So as I struggle to accept our situation with grace, this is a hard battle being fought in my mind. Does God really know what's best? Could taking Caroline really be what's best? Is he really expecting me to handle this all with grace, giving him the glory through it all? I always, ALWAYS know the truth, but that doesn't make it easy to accept.

So what did God do? He sent me this Scripture to let me know what's up. He wanted me to know, in no uncertain terms, the truth. It hurts to consider it, but it's also a comfort in some ways. This Scripture says I MUST love God more than anyone else in my life. If I cling to my daughter too tightly, I am not worthy of my Jesus. If I don't look at this situation as "my cross," and as my share in Christ's suffering, I am not worthy of my savior.

I can't love Caroline more than I love Jesus. Period. I can't love my mom more than I love Jesus. I can't love Cameron more than I love Jesus. I can't love anyone more than I love Jesus. And that will mean that sometimes, I might have to hurt. Jesus hurt. His cross was painful. Dying a sinner's death was painful. Watching the people he loved, who he was dying for, spit on him, mock him, beat him, and deny him, was painful. He was abandoned by his friends, ridiculed by his enemies, and forsaken by his Father. He faced way more than he's asking me to face. But he was also victorious over death, and saved all of us who choose his salvation. If I'm not willing to follow him, bearing my own cross or pain, then I'm not worthy to be called his. I will honestly admit that I don't like that sometimes. That's a hard pill to swallow. But it's the truth. And the truth is, Jesus is the only one I can't lose. He'll never leave me, never forsake me, never fail me. Any other human being, I can lose (at least for my remaining time on earth). They can hurt me, fail me, disappoint me. They're not Jesus. No one else can save me for eternity. No one else has chosen to die for me so that I could live, eternally.

And in the end, I want to be found worthy of my Jesus.

So if I have to love Jesus more than I love Caroline, then I will. If I have to hurt, I will. If I have to lose my daughter, then I will. If I have to lose my life to gain it, then I will. I want to be found worthy. Nothing else on this earth could truly satisfy me, comfort me, make me happy, or gain me eternity like Jesus can. Nothing. As hard as that is to live out, it's true. As hard as this concept is for me, it's true. As hard as it is to take up a cross, voluntarily, and follow Jesus, it's what's best for me. Always.

I can tell you that right now, I am not altogether feeling very worthy. I am not feeling altogether willing when it comes to taking up my cross. I'm not feeling very able to love Jesus enough to say he can have my daughter if that's what his will is. But I'm trying. And as I try, I'm begging Jesus to help me. Without his help, I know my efforts to be worthy of him are futile. I am too jacked up. I am too weak. I am too bound to this earth and my limited understanding. No sane human being can WANT pain and suffering. No human being can WANT to lose a child. It's not normal. But I CAN want to be worthy of Christ, no matter the cost. I just CAN'T do it on my own.

So just as I've been clinging to Jesus for comfort and grace, and for the strength to make it through all this, I am also now clinging to him for courage. It's going to take courage for me to live out this idea. It's going to take a lot of supernatural help for me to be anywhere near successful. I'm going to want to recoil and rebel against all this; I already DO recoil and rebel at the thought of it. But I want to be worthy. I WANT to be worthy. If he ends up giving us our healing miracle, then I will be ecstatic and rejoice and praise him forever. But if that is not what he chooses, then I want to be worthy anyway.

"Anyone who loves their father or mother more than me is not worthy of me; anyone who loves their son or daughter more than me is not worthy of me. Whoever does not take up their cross and follow me is not worthy of me. Whoever finds their life will lose it, and whoever loses their life for my sake will find it." - Matthew 10:37-39

Lord, I beg you; make me worthy of you.

20 weeks

I am 20 weeks pregnant today. Caroline celebrated the "halfway" mark by doing gymnastics in my belly all day. Haha. I'm still amazed that I can feel her move around without falling into despair. God is good, and his mercy continues.

Today has been a challenging day for me, though. Knowing I'm "halfway" through my pregnancy is definitely bittersweet. Before we found out Caroline had anencephaly, I was really looking forward to being halfway done. Now...I'm kinda sad it's already halfway. With the uncertainty of the future, this just brings us one step closer to the inevitable. The closer we get to my due date, the closer we're getting to the moment of truth. I put halfway in quotes because I don't know if I'm halfway through my pregnancy or more than halfway, since we don't really know when Caroline will decide to leave us, barring a miracle. If we get our miracle, then, well, I'll rejoice that I'm getting closer to meeting my baby girl. But if we don't get the miracle of healing for our little one, I'm pretty much dreading the end of my pregnancy.

Today has been one many tests of my faith and hope. It's very tempting to give into the melancholy that some of my thoughts today have brought. And I have, to a certain extent. I've shed some tears today, and my heart has been squeezed more than on most days. I've wondered if it's worth it to hope for a miracle or if I should just resign myself to the medical inevitable. Living between the two possibilities is beyond exhausting, and sometimes I wish I could just know one way or the other so I can "move on" and get things settled.

When I really search my heart and look into the depths of my soul, I know this self-doubt and self-pity is just temporary. "But he said to me, 'My grace is sufficient for you, for my power is made perfect in weakness.' Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me." -2 Cor 12:9. If you don't know the awesomeness of God's power when you are at the end of yourself, I suppose what I'm saying doesn't make much sense. But it is perfectly clear to me. Even in my weakness, even when I'm living in doubt and not faith, even when I want to give up all hope, God is powerful. He's got things under control when I'm falling apart. Do you KNOW how comforting that is? I can sit in my lowest hour and KNOW that God is handling things for me.

As Caroline has made me very aware of her presence today, I've really had to pray a lot. Every kick gave me both joy and pain. Every kick reminded me of how much I love her, and how fragile her existence on this earth is. This is the hardest part about living with anencephaly. You are constantly faced with the evidence of life while simultaneously having to face the reality of impending death. To say my heart is being stretched to the breaking point is an understatement. So with every kick and every roll, I've begged God to heal Caroline, or to heal me. I've begged him to help me through these next months and years, regardless of the outcome. I've begged him to sustain me when things seem so dark and uncertain that I just don't want to go on anymore. I've begged him to not let me lose hope, and to not let my faith be shaken. This is so hard.

Every milestone I hit is going to be a challenge. Every week that passes is going to bring its own joys and sorrows. One of my favorite scriptures is Romans 8:26-"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." I don't know what to pray for at this point. I am begging for miracles at the same time I am begging for comfort. I am petitioning God to help me overcome every challenge that comes my way. I'm asking that he use me to glorify himself. And yet there are some things I can't put into words. I am such a weak, fallible creature, and I really just don't know what to say sometimes...or a lot of the time. It is such a comfort to me to know that where I fail, when I lack substance, the Holy Spirit comes in and saves the day. He knows what I need, and he asks God for me. It's a good thing he does, because I am easily at a loss for words and wisdom in this situation. And sometimes, I just can't speak. I can't form coherent sentences. When my heart is breaking and my eyes fill with tears, words don't always come. But my heart and spirit cry out to my Father, and his spirit understands what I need and asks for me. I am so grateful.

The good thing is...I've made it through the day today. I am still hoping for healing for Caroline while struggling to submit myself to God's will. I still have grace and peace overflowing from my Heavenly Father, getting me through the rough spots. I have not truly been overcome by the difficulties of the day, even though it may have felt like it at times. My God has rescued me once again, and I can once again focus on him and how amazing, loving, faithful, and merciful he is, especially in my weakness. That doesn't mean things are any easier or that I don't still have unshed tears in my eyes, but I am not destroyed. I will not be destroyed, for my Jesus has already won the victory.

55 “Where, O death, is your victory?
Where, O death, is your sting?”[h]

56 The sting of death is sin, and the power of sin is the law. 57 But thanks be to God! He gives us the victory through our Lord Jesus Christ.

58 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 Cor 15:55-58

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

Praise the Lord for his victory. It is because of this victory over death that I can face this trial, that I can face what may be required of me. And praise Jesus I don't have to do it alone.

Living in Denial?

I'm thinking that the strain of the past week has perhaps started to get to me. Ok, so the strain has always been getting to me, but I feel like the intensity has increased lately. I'm beginning to feel slightly more defensive, and slightly more irritable. I don't like that it's happening, but it's not something I can really do anything about. Emotions happen. It's what we do with them that matters, I think.

I'm not perfect by any stretch. Trust me. If you could switch places with my husband for a couple days, you would know without a shadow of a doubt how imperfect I am. I am struggling with this diagnosis. I'm trying to be open and honest about it, too, but unless we have an hour long conversation, you might not see the whole picture. The complexities of the emotions and thoughts that I'm dealing with right now are more than can be expressed and understood in a 10 minute conversation. A lot of people have shown enormous care and concern for us. I am eternally grateful. But it's hard to answer the question, "How are you doing?" with any real success. How am I doing? As well as I can under the circumstances. And if you ask me that, I'm going to tell you as much as I can in as succinct a way as possible. My typical response right now to that is, "I'm doing ok for now. I have my hard moments, but God's grace has flooded us, and we're making it through." Does that mean I'm not struggling? Not at all. Does that mean I'm hiding behind cliches? I'm not trying to. Does it mean I'm living in denial? Hardly. It means I want you to see God's grace, not my weakness. Everyone knows this is hard for us, that it hurts. I don't need to show you I'm weak. The circumstance tells that tale. I won't deny it. I'm not trying to hide it. But where is the glory to God in emphasizing my weakness, if I don't then point you to his grace? His STRENGTH is made perfect in my weakness. He's more important than I am. I want you to see his strength through my weakness. Not my weakness alone.

I think it's easy to look at the way I'm handling things right now and wonder if I'm off my rocker a little bit. Truly. Maybe I am, I don't know. But I don't think so. I think I got a horrible diagnosis 10 days ago, and I'm still learning how to process it. I don't know what the future holds. I am, as I have mentioned constantly, praying for my daughter to survive. I am clinging to the hope that God will heal her. How can I do anything else? I love her enormously already, and I don't want to lose her. I have a profound new understanding of faith and hope. I am being showered in God's grace and mercy, and that is all that is getting me through; grace, mercy, and hope.

The day we found out this condition was even a possibility for Caroline, I bawled. For a long time. I clung to my husband's hand or hugged him and just cried. That was before we even knew for sure Caroline had anencephaly. When it was confirmed the next day, you don't want to know how much I cried. I've already shared the thoughts I had that first day (see this post). I had pretty much already started to mourn her and didn't know how I was going to continue carrying her, knowing I would lose her. In my mind at that time, there was no hope for a miracle. I didn't think there would be any outcome outside of the medical certainty. It was a very hard day for me. To go from the excitement of expecting a healthy child to the process of planning her funeral was not something I cared to do. What parent would?

The next day brought God's grace and clarity. He reminded me that he is bigger than medical science, bigger than anencephaly, bigger than the loss of our daughter. If he wanted to, he could simply whisper the words, or even just THINK the words, and she would be healed. Period. No questions. Will he choose to do that? I don't know. I really don't. I hope so, but I have no guarantees that he will. I just have to trust that he knows what is best, and rely on him when the hard moments come. Whether those hard moments are short lived because he heals her or sustained because we lose her, I will be clinging to Jesus in them no matter what.

Does this mean that I can trust and hope all the time, and not fail in my faith? Ha! Absolutely not. Does this mean I'm living in some dream world where she's healed and I don't have to suffer? Not a chance. I can honestly think of perhaps two days in the past ten where I didn't cry over Caroline's probable loss. Those two days were because I was distracted by other things going on and didn't really have time to think about anything at all. If I think about Caroline, I have to face reality; I don't know what's going to happen to her. I have to face it everyday, every time she kicks, every time I see my reflection in the mirror. I have to face the fact that it is a medical certainty I will lose my first child to a horrible disorder unless God steps in to heal her, which I have no guarantees he will. You know what though? I can't live there. I can't let myself despair. I can't let myself sit in the uncertainty and fret, or mourn Caroline's loss indefinitely. I would literally go insane. I have to cry, I have to mourn, I have to break down, I have to stumble. But my God is bigger than my weakness. My God is bigger than my despair. My God is bigger than DEATH.

If I focus on my circumstance, I will lose my mind, and my faith will be shaken. If I focus on the God that is bigger than circumstances, I can continue to have faith, to have hope, to point others toward the hope I have. Even if my earthly hope of healing for my daughter doesn't come to be, my TRUE hope is eternal. Because my hope for healing does not come from an earthly perspective anyway. Only God can heal her, and only he has the power to. It would be to glorify God that she is healed. If it doesn't happen here on earth, she will be perfect in Heaven, and we'll see her there someday. That's all that matters to me right now. There will be plenty of time for me to mourn and miss Caroline, plenty of time to cry, plenty of time to face the realities that go along with losing her. We're already facing some of those by making plans I would rather not have to make. But that doesn't change my mindset.

It would be a lot easier for me to crumble under the weight of this whole thing. There are days I am TIRED of CHOOSING to be hopeful and faithful. There are days when I'm just plain tired. This is not an easy path for us, and I will never claim that it is. If I tell you I'm doing ok, it's because I am not crushed. I am not overcome. And I have not lost my eternal perspective on Caroline. It doesn't mean I don't hurt or struggle. It doesn't mean I don't sometimes wonder why this is happening to us. It doesn't mean I'm living in a dream world of denial. It means I am resting in my Heavenly Father's loving grace and mercy. It's the only place I can survive this potential/probable tragedy. If I don't have Jesus, what do I have? Even if Caroline was completely healthy, we wouldn't know how long we have with her on earth. Cameron and I are not naive enough to think that a healthy baby equals a long life for that child. This has just sharpened that into clearer focus. We live in a fallen world. Death happens, to all people, at all ages. And we're facing that as it comes, but trying our hardest to maintain a Biblical and faithful perspective. God has a plan in this. As much as it might hurt, I am trusting that whatever happens, he will sustain us. He loves us, and he loves Caroline. That's all that matters right now.

So if you ask me how I'm doing, now you can know what "Ok" means; you can know that my response is honest and not delusional. You can know that my heart is breaking, that I am stretched thin by the two possibilities I'm constantly stuck between, and you can know that God is bigger than all that. And that without him, I would be a mess. That is the God's honest truth. I'm enough of a mess even with him as it is. Haha. As I often say, I am so thankful that I serve a loving, kind God, who lavishes his mercy and grace on me as I make my way through this quagmire of faith, hope, doubt, fear, and uncertainty. He is patient with me when I lose it, he holds my hand when I am weak, and he is glorified when I can put my self aside and see him for who he really is. I am honored to be called his child, and I praise him for holding me like a Father would. Thank you Jesus for your comfort and grace in the midst of heartache and uncertainty.

It's Weird to Wear Maternity Pants

I'll be 20 weeks pregnant on Monday, so in 2 days. I'm starting to get a belly now, which before the diagnosis I was anxiously awaiting. Now, I'm still excited to see Caroline growing in my belly, but it's a bittersweet joy.

And it's weird to wear maternity pants.

I just started wearing my first pair of maternity jeans in the last couple days. Cameron even mentioned to me today that he can tell more easily that I'm pregnant externally. I was laying down, and he could still see a little bump. It was kind of funny when he said it, but it's true. Most of the time, I'm doing ok when it comes to feeling Caroline move and seeing my belly grow. I take it as joy because she's still with us and still growing and there's still the possibility for our miracle.

Then there are times when it is absolutely painful. As I mentioned in another post, I'm living in a weird world of split possibilities. I'm constantly going back and forth between hope for healing of Caroline and hope for healing for Cameron and I if we have to give her to Jesus. Moments of hope for healing make me joyful for external signs of Caroline, and the moments of hope for comfort in loss make those same signs painful. I'm still figuring out how to deal with all that.

It's amazing to me how something as simple as maternity clothes can make me think so deeply about things. It makes me focus on what is important, and I am so grateful that God is giving me the grace to make it through times where even something like maternity jeans can make me cry, or cringe, or feel pinpricks on my heart. And I know he'll continue giving me that grace as much as I need it. And I will continue having my moments of bittersweetness as I grow a bigger belly with my sweet baby girl inside, and continue wearing more and more maternity clothes. The reminders will continue, so the grace will too. I am so grateful for a God who loves me enough to care that maternity jeans can make me cry.

Struggling Between Two Worlds and How I Pray

It's time to talk about my miracle.

I have a baby growing inside me that, according to two sonograms at different times, has anencephaly. No brain, no skull. She can't survive without them, so we know what the end result will be. As far as medical science is concerned, anyway. I know that if nothing supernatural and wonderful happens, I will lose her. I know it. It's reality. I've already, in some ways, started to mourn her. We've already had to start talking about plans for if/when that happens. You can never be prepared to lose a child, but you can be as prepared externally as possible. We're working on that.

We can work with our hospital to create a "birth plan." Almost everyone makes a birth plan, healthy babies and mamas included. It's just how you know what to expect during delivery. You know where you'll deliver, who's going to be there with you, whether you want pain killing drugs or not, etc. It's wise to plan. In our case, our "birth plan" also includes how we want to handle losing our Caroline Grace. Her birth will be very closely tied to her loss. That's just how anencephaly works. It is extremely difficult to think about the birth of a child also being the end of their life here on earth. I'll be honest and tell you I want to avoid thinking about it as much as possible. Once we make the plan with the hospital, I will try to forget everything I can about it except what I still need to do to make it happen. But it is reality, and it has to be done. I'll manage somehow, with the help of my husband and my Lord, to make those decisions about my precious baby girl. I'm not living in denial about the probability/inevitability of her condition leading to her loss.

But.

I have this other side of things that I am constantly praying for. A miracle. Anencephaly cannot be treated. It can't be "fixed." There is no "change in the prognosis," as one of the doctors stated. As far as the physical world ruled by scientific laws, there is no hope for Caroline. I understand that, all too fully. But I believe in a God that CREATED this world, and it's scientific laws. Not only this world, but me. And my precious Caroline Grace. As I mentioned in one of my previous posts, he has power over death itself, so some little condition that is supposed to cause death is no problem for him. I know, in my heart, and without any doubt whatsoever, that He has the power to heal her. He has the ability. And I pray every day and beg Him to heal her, to give me "my" miracle, as I call it. Because it would be mine. It's a selfish request. I want my baby girl. I don't want to lose her.

But even in my selfishness, I have a somewhat altruistic motive as well. I desperately want to keep my baby girl. I don't want to go through the pain of losing her before I even get to have her. But I also want her healing to glorify God. There is NO OTHER WAY she can live. If she lives, it's because He healed her. There is no other explanation. Period. A brain and skull cannot just develop this late in pregnancy. This condition started before I even knew I was pregnant, so it's not something that can just be fixed now. Unless, of course, you're God.

I will let you know, however, that I have trouble even though I KNOW God CAN do this. I don't know that he WILL. So as I'm praying for her to be healed, I have to acknowledge that it might not happen. I fervently pray that it will, and I have all the faith in the world that it COULD, but I don't know how to feel when it comes to the fact that it might not happen. I live in a world of dichotomy. I have medical reality and supernatural grace constantly vying for my attention and loyalty. I am pulled between the two "realities" constantly. It's exhausting, but there's no way around it. To surrender one is to give up hope. To surrender the other is to give up sanity. It's a surreal place to be. I live with two opposing options constantly. And it's hard. And weird. And hard.

At first, this was a major dilemma for me. I didn't know how to pray. I wanted to pray with confidence, to "approach the throne with confidence" with my request. Hebrews 4:16 says, "Let us then approach God’s throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need." Amen. That's what I wanted to do. But how can I come with confidence when I don't know what will happen? I had to be honest with God.

I have two major stories from Scripture that I am modeling my prayers after. The first is Jesus himself, when he was praying in the Garden of Gethsemane. It was right before he was arrested, betrayed by one of his own close friends, and dragged away to be killed. As God in the flesh, Jesus knew what was coming. He KNEW God's will for him. And even still, he BEGGED God to take away "the cup" that was before him. He cried tears, and he sweat drops of blood, he was in so much anguish. So he prayed, and asked God for a miracle, begged God to take away the pain that was coming. And then he said, "Father, if you are willing, take this cup from me; yet not my will, but yours be done." (Luke 22:42) Yet not my will, but yours be done. That, my friends, is very hard to do. But I am trying my hardest to pray like Jesus did. "Father, if you are willing, take this cup from me; yet not my will, but yours be done." I confess that the last phrase is more a choice to verbalize it than a true sentiment at this point, but I've told God that. He knows how I feel. And I think he gets it. I'm trying to surrender to his will, no matter what it is, but I don't want to. I want what I want. I want my Caroline. But my act of constantly expressing the truth, confessing my weakness, but trying to surrender my will anyway-well, it's the best I can do, and I hope God's grace can make up the difference.

The other thing in Scripture that I cling to is a story in Mark 9. The basics are this-Jesus is going around to a bunch of places, healing people, teaching, preaching, and loving people. Always loving them. He gets to this one place, and a crowd has gathered because there is a demon-possessed boy there, and the Disciples are trying to drive the demon out. It's not working, so when Jesus shows up, he's left to do the dirty-work. He calls the people there an "unbelieving generation" and asks how long he'll have to put up with them. I laughed when I read that, because it's so me. I can just picture Jesus looking at me and saying, "Emily, how long do I have to put up with your unbelief?" He's not saying it to be mean, but because he knows the freedom that comes from faith. I'm learning the lesson slowly.

Anyway, the poor afflicted boy is brought to him, and the boy's father says, "But if you can do anything, take pity on us and help us." I love this. He's so raw. He's probably tried everything he can think of to make his son better. There is nothing he can do, and he's resigned, but has one last hope. He brings him to Jesus. Do you know what Jesus' response is? "If you can’?” said Jesus. “Everything is possible for one who believes." I love it. And then the father's response is totally me. It brings me hope, and it shows me grace. And I love it. The father of this boy who has been afflicted since childhood with a terrible spirit, comes clean. "Immediately the boy’s father exclaimed, “I do believe; help me overcome my unbelief!"

Can I just take a second to let the tears clear from my eyes? K, thanks.

This just breaks my heart and gives me hope all at the same time. Jesus healed this guy's son. He understood the raw honesty. I say that phrase constantly. Lord, I do believe! Help me overcome my unbelief! It is a desperate cry from my heart. I want so desperately to believe, and he gets that I'm imperfect and fall short. His grace covers me anyway. So as I'm praying for my miracle, I beg God to heal my baby girl. I BEG him. And then I say, "As much as my heart breaks to say it, not my will but yours be done. I do believe, but help me overcome my unbelief." I believe that God's will is best. I do. It's hard to believe that he would not heal my little Caroline, and it's still what's best. So I'm asking him to help me. I'm asking him to give me the grace to face whatever comes. But I'm still begging for my miracle. I will until the day there is no more doubt. God will either heal her or take her to Heaven with him, and then I'll know. But until that day, he's going to hear from me. Like Jesus, begging for this condition to be taken away, but surrendering (as well as I can, rebelling the whole way) to his perfect will. I am so glad I serve a God that is loving, patient, and graceful.

So I'll keep begging, and confessing, and begging some more. I will live between my two opposing options, and I will ask for the grace to withstand the strain. And I will keep praying, "Father, if you're willing, take this cup from me; yet not my will, but yours be done." And I will follow it with, "I do believe; help me overcome my unbelief!" Thank you Jesus for your grace in my weakness.

First thoughts and a change in perspective

I just want you to know that my first thoughts when Caroline was diagnosed with anencephaly were not great. I have dubbed them my "horrible thoughts." I want to be candid about what I was thinking, because I think it's easy for us to beat ourselves up about the thoughts that naturally occur to us in times of distress. Hopefully knowing that I had these thoughts can make someone else take comfort in the fact that they're not alone. I also want to note that while I am not proud of the fact that I had these thoughts, I am also not riddled with guilt about having them. I think they were part of what I had to go through to get to where I am right now in my journey.

One of the first things I thought was, "Am I going to be able to love her?" In my mind, I was having trouble figuring out how I was going to love my baby girl. How could I love her, knowing I would lose her? How could I LET myself love her knowing that? I wanted to distance myself as much as I could from her so the loss of her wouldn't hurt so badly. Ha.

The second thing that came to me was, "How am I going to cope with watching her grow?" I didn't want to see my belly grow. I didn't want to feel her moving. I didn't want to know she was there. I felt like she had been ripped away from me already, and having a constant reminder of her presence was going to kill me. That led me to the next thought...

"I hope I can just miscarry soon so I don't have to go through this for very long." This one hurts the most looking back. We had adamantly refused to abort Caroline, but my thoughts were running dangerously close to the same perspective. Get rid of her so the pain can be over. It is so hard to look at a future with a medical certainty of death and not want it to be over with quickly. But I'm glad this thought didn't last long.

I also thought, "It doesn't matter if I 'act' pregnant anymore...nothing I do matters to her, and I can't 'hurt' her anymore than she already is." I thought how pointless it would be to keep taking my prenatal vitamins, that it didn't matter if I ate all the right things, and that it wouldn't matter if I lifted something heavy. Nothing mattered anymore. This also didn't last long, but the fight against futility is a tough one.

All these thoughts passed through my mind on that first day of diagnosis. By the end of the day I was doing a little better, but that initial shock really threw me for a loop. I felt helpless, hopeless, and defeated. I had to really drop to my knees in prayer to make it through that afternoon. My immediate family, especially my mom, was a great encouragement and help to me. I don't know what I would have done without them. I went to bed that night feeling slightly more at peace, but it wasn't until the next morning that things really changed for me.

I am convinced that people were praying for us all night long. That next morning, a Friday, I woke up with so much peace. I was able to email our close family and friends and post a note on Facebook to inform everyone about what was going on. I have received countless replies to that email that have just absolutely blown me away. I have been humbled by people's thoughts and opinions of what I wrote, and know that God is being glorified in this situation despite my many imperfections. Cameron and I keep saying that God is working a miracle in this situation whether we get "our" miracle of healing for Caroline or not. And I am blessed to be a part of it all.

That morning my perspective changed. God just poured out a flood of grace and mercy on me. I was convinced that I could do nothing but love my little girl with abandon. I know it will hurt if/when we lose her because I love her so much, but I wouldn't have it any other way. I cannot believe how much this little person inside of me has already stolen my heart. And maybe it's because I know I won't have much time with her, but I treasure every minute of her existence here on earth, even if it is just in my womb.

I also am amazed at how much I enjoy feeling her move and watching my belly grow. I feel a bittersweet twinge every time she rolls over or kicks me from the inside, but I cherish those moments, knowing she's still with me, that there's still the hope and possibility of a miracle, and that she's not gone to be with Jesus. Cameron was able to feel her kick for the first time this past weekend, and it lit up his face. It just made my heart flood with a somber joy to see that.

I am now begging God to let her stay with us as long as possible. I cannot imagine wanting to lose her quickly anymore. She is my baby girl, my Caroline Grace, and I want to keep her as long as I can. Every day that I feel her and know she's still with us makes me so grateful. I can't imagine feeling any differently anymore.

I voiced some of my thoughts to Cameron that first day. In response to my hopelessness about taking care of myself and her, he said, "God has entrusted her to us, even if it's just for a little while. And if she's still here with us, it's our responsibility as her parents to take care of her to the best of our abilities. If we lose her, then we lose her, but until then, we have to take care of her." And he was right. If her life is valuable enough to continue the pregnancy, then it has to be valuable enough to treat her with the love and respect she deserves as our child. Now I might even be more careful about what I eat, do, and lift than I was before we found out about her condition. I love her enough to take care of her to the best of my ability.

Something else Cameron said that stuck with me was this: It felt like Caroline was "born" on that fateful Thursday. We may not get much time with her here on earth, and it may all be while she's ensconced in my womb, but we can still celebrate her life. We aren't waiting until she's physically born to appreciate her or love her, or to make memories with her. We may not get that chance with her outside the womb. So while we still have her, we're going to cherish her as if she was already outside here with us.

Since those first couple days, I've also had some comforting thoughts. God lost a child too. Not only did he lose one, but he CHOSE to lose him. He SENT him so that he would have to lose him. What kind of great love is that? So not only does he understand how I'm feeling, he also loves Caroline, Cameron, and me more than I could ever love Caroline myself. That makes me feel so much more at peace. It also reminds me that through his great love, we have the ability to see Caroline again in Heaven someday. Our goodbye is not forever, so we won't mourn with hopelessness. We can rest in the fact that she is loved and will be at peace, waiting for us to join her.

The other thing that brings me great peace is that I know God is bigger than all of this. He has power over death itself, so he most certainly has power over a physical condition that causes death. I can have faith that he CAN work a miracle in Caroline's little body, to heal her and make her whole. That doesn't mean that IS what he will do, and I know that. But it helps to hope in someone that has the power to do it, instead of being resigned to the fact that it is medically impossible. I'll elaborate more on that in another post, but suffice it to say that hope for healing is a very powerful thing, and something I won't relinquish until the day Caroline is either healed or goes to be with Jesus, if that is his will for us.

In the meantime, I will love her and care for her as much as I can, and I will treasure her life, even if it only lasts until the day she is born. Thank you Jesus for hope and grace, and for a peace that passes understanding.

First off

Today is Wednesday, and tomorrow, it will have been a week since our baby Caroline's diagnosis of anencephaly. I'm pretty sure it's been the longest week of my life. I have faced more emotions than I even knew existed. I have been amazed at God's grace and peace and humbled by the love and support of family and friends. And I've struggled a lot. The next few blog posts will probably outline some of what's been going on in my head over the last week or so, although I'm not sure I've really processed everything enough to share everything. But I'll start at the beginning.

Last Wednesday, October 5th, we got a phone call that Caroline might have anencephaly, but that we needed to go see a specialist to confirm the diagnosis. My poor husband Cameron had to break the news to me, because he was the one that talked to the doctor. We cried a lot that night, and I prayed desperately that they were wrong and that Caroline just didn't cooperate well enough for good pictures. I was a little bit in shock, to be honest, and even as we did research about the disorder, I was rejecting the diagnosis until we got confirmation. My baby didn't have this problem. She couldn't. Everything had been fine, even up to the day before, when we had that first ultrasound. I was outwardly trying to make sense of the whole thing, but my mind and heart were shut down, and wouldn't accept anything as real.

When we got the confirmation on Thursday afternoon, I was numb. I cried and reeled against the shock, but I couldn't focus on what was happening. I went through the motions, and it was like I was watching someone else deal with this situation. It wasn't me. Making phone calls to family was surreal. It felt like time had stopped, and I was repeating a story several times that didn't involve me. I felt like I was suspended in a vacuum, and someone else was making things happen around me. I knew what was going on, and my heart was breaking, but the full import of what was happening wasn't hitting me. It was hitting the pseudo-me I was watching.

That night when all the phone calls had been made and after my husband and I had cried together and tried to figure out what was happening to us, I decided I needed to write down what was happening. For some reason, putting it down on paper made it seem like I could start to process everything. I knew we needed to tell our friends and family what had happened, but I knew I couldn't do it in phone calls or anything. The few phone calls we had made to our immediate family members had been enough for me, thankyouverymuch. Email and social networking seemed to be my best options. I could tell everyone I wanted to tell, while only having to "tell" the story once. So I wrote down what I wanted to say before I went to bed on Thursday, hoping Friday would make it easier to tell.

I didn't sleep very well that night. I woke up several times, and for a split second each time, I believed that the whole thing had been a nightmare, and that I'd woken up from it and everything was fine. Then my mind cleared from the fog of sleep and reality hit me again. That was a very long night.

When we were finally able to drag ourselves out of bed that morning, Cameron and I tried to do what needed to be done. Cameron went on a search for information, which was his way of processing what was going on. I wrote the email to family and friends, which was my way of processing. Typing up the words that described in detail what was going on made me break down for a little while. It hurt so badly, and I knew that anyone that read it was going to hurt too. I hated that thought. As much as I was hurting, I didn't want anyone else to have to hurt. But I knew it needed to be done, and for whatever reason, I felt strong enough to do it. I can honestly say that at that moment, I was CLINGING to Christ for His strength and grace. I can just picture myself like a scared animal digging claws into the one thing it thought could make it safe. If Jesus was here in the flesh right now, he would have bruises from my fingers...that's how tightly I've been holding on to him. And he's been there for me.

Throughout this whole situation, I have felt the supernatural presence of God. I have never felt more peace given to me than I have during this past week. I have never felt more grace given to me. I've never felt the truth of the words, "When I am weak, He is strong," as much as I have this week. It has literally blown my mind. There are times when I think I should be crumbling under the weight of this diagnosis and its prognosis for the little girl I want to keep so badly, and who I already love so much. Somehow, even when I'm weeping at the thought of losing her, I feel a deep-seated, underlying peace that truly passes my understanding. It's like I'm a small child afraid of the dark, with a strong daddy holding me in his arms, comforting me and telling me it's alright. I know, without the shadow of a doubt, that Cameron and I will make it through this. I'm praying fervently for a miracle of healing in little Caroline's body (which I will talk more about later), but I know that even if it doesn't happen, I'm going to be ok. That doesn't make it hurt any less, and I still hate to think about the "inevitble" future we are going to face without that miracle. But I know in the end, I will be ok. And when nothing else can make things manageable, Jesus is there to share the burden.