As time goes on, I wonder if things are getting easier or harder to deal with. On one hand, the distance from the shock of Caroline's diagnosis makes it easier to accept. On the other hand, the passage of time means the emotional strain increases, and the time I have with Caroline is growing shorter, barring our healing miracle.
So really, it's not really easier or harder. Some days are easier, some are harder. It just depends on the day. I usually have more good days than bad days, but I still have bad days. Those are the days when I let fear and anxiety take root in my mind and heart. They're the days when I can't find the motivation to do anything. They're the days when I just let myself feel sad and helpless and hopeless. The hope and grace of God are never far distant, I just don't pay as much attention to them on my bad days.
It's definitely emotionally draining to live with this. It's not something that can be resolved quickly or prettily, it's not something you can really ignore until it goes away. It's not something you can easily dismiss from your mind. That's probably the worst part of this whole deal. It's like a never-ending horror scene playing over and over in my brain. I can "look away" for a while by distracting myself with other things, but it's always there in the background, waiting for me to look back at it. I can try to change the images to something more positive, and that sometimes works for a while. But it does seem like no matter what, I always end up looking back at the horror.
Then there are the physical things. My belly is growing, it seems like daily. I feel Caroline kicking all the time. I can't really ignore her presence. It's somewhat surreal. I know I have her for now, and I know that my pregnancy is progressing "normally" for now, but it almost feels like this is some other-worldly experience, and the end result is that I don't get the fun stuff when it's all over. I'm pregnant, I feel my baby, and yet I know that when she's born, it's very unlikely I'll get to keep her for any amount of time. It's very unlikely she'll ever come home to our house. I won't have a nursery, I won't get to do all the fun mom-to-be stuff. It's just weird to think about having a child, going through all the stuff before she comes just like normal, and then...that's it. There will be no normal at her birth, or after it, unless God decides differently.
Sonograms aren't "fun" for me, even though I do enjoy aspects of them. I love seeing Caroline moving around, giving the doctors a hard time by not being in a position they need her to be in to get certain pictures. I love projecting a personality on her. I love having pictures of her to take home, as a memory of her. I hate seeing evidence of her condition. I hate going in to the doctor's office with anxiety, hoping everything is still ok, wondering if I'll see her healed miraculously. Sonograms should be fun, getting to see your baby, watching her grow, getting excited for her to come into the world.
On my bad days, I feel really gypped. I don't get any of the "fun."
It is difficult for me to pull myself out of that thought process sometimes. It is only by the grace of God that I can. It takes supernatural effort. He has to remind me that he has a plan for me, to prosper me and not harm me, to give me a hope and future (Jeremiah 29:11). He has to remind me that his grace is sufficient for me, because his power is made perfect in weakness (2 Corinthians 12:9). He has to remind me that he will never leave me or forsake me (Deuteronomy 31:8). He has to remind me that he's been there, given up a child in his Son. He has to reassure me that I don't need to be anxious, but I do need to pray, with thanksgiving, so that his supernatural peace can guard my heart and mind (Philippians 4:6-7). My natural inclination is to sit in that pool of self-pity and despair, to marinate in the "unfairness" of this situation, to stew in my own hurt and self-righteousness. It is truly only through his love and grace that I don't stay there. He won't let me.
It doesn't mean I always like it, or that I'm very good at listening to him. It's just a good thing he doesn't pay attention to my shortcomings, but comes along-side me to carry me through my bad days because he's perfect. And amazing.
It still hurts to think I won't get to celebrate Caroline's first birthday, or any birthday for that matter. It still stings to feel her kicking and know that unless God intervenes, this is all I get with her. I still get scared that I won't be able to stand up under the constant weight of anxiety and uncertainty. I still hate that I won't be able to go shopping for all the cute little frilly clothes I pass in stores all the time. It just hurts to know I probably won't get to have a relationship with her here on earth, to get to know her personality. It hurts a lot. And in those moments of pain, I don't want to praise the Lord. I don't want to rejoice in the blessings I have now, regardless of the future. I don't want to look for the good coming from this. I just want my baby girl. And then...
"I consider that our present sufferings are not worth comparing with the glory that will be revealed in us." -Romans 8:18
The idea in this verse is all I have. If/when Caroline leaves us, this is all I have. When I get to Heaven, this will seem so much less painful. This will be "worth it." I know intellectually that God will be glorified, and I know that his plan is a great one. I know that Caroline will touch lives no matter how long her earthly life is. And when I can't think of anything else that is positive about this situation, this is all I have. My present sufferings are insignificant compared to the glory that will come later. It doesn't mean my hurt is insignificant to God, or that he doesn't care about it. It doesn't mean that while I am alive on this earth, that this won't continue to hurt, even long after Caroline is born. Even if God does decide to heal her, the pain I've experienced and the lessons I have learned by walking through this journey will leave an indelible mark on my life. I don't know what the outcome will be here on earth, but I know the outcome for eternity...God will be glorified, and it will be good.
This is what I HAVE to focus on to get through this. Even on my bad days, it isn't long before God nudges me in the right direction. He loves me too much to let me be defeated. He wasn't defeated, so he won't let me be. He points me to the truth, and the truth sets me free (John 8:32). God is so gracious.
"For the perishable must clothe itself with the imperishable, and the mortal with immortality. When the perishable has been clothed with the imperishable, and the mortal with immortality, then the saying that is written will come true: “Death has been swallowed up in victory.”
“Where, O death, is your victory?
Where, O death, is your sting?”
The sting of death is sin, and the power of sin is the law. But thanks be to God! He gives us the victory through our Lord Jesus Christ.
Therefore, my dear brothers, stand firm. Let nothing move you. Always give yourselves fully to the work of the Lord, because you know that your labor in the Lord is not in vain." -1 Corinthians 15:53-58
Death is not victorious. Its sting is made innocuous. Christ has given us victory. Our labor is not in vain. Whether he will deliver Caroline from immediate death here on earth, or if the victory is meant to be of the eternal kind, he is still victorious. And because of that, I cannot dwell on the negative, I cannot focus on the hurt, and I cannot give credence to anything else. Death has been swallowed up in victory!
On my worst days, in the midst of extreme sadness and pain, he is victorious. I can't help but turn my eyes from myself, from my pain, and look to him in victory. He knows I hurt. He knows I'm sad. He knows this is hard. But his power is made perfect in weakness, and he wants me to remember that he is victorious. To do anything else is to spit on his sacrifice.
So I may not, on my bad days, feel like praising him. I may not feel like looking for the good in this situation. I may not feel like I can overcome the fear, anxiety, and pain. But the truth is still the truth. He is victorious, and he is with me. If that can't take the focus off my own emotions and back where it should be, on my Savior, Redeemer, and Friend, then nothing can. I don't always have to feel it. I just need to know it.
He is victorious!