That was one of my favorite songs ten years ago, and the title still holds true.
I’m going to be honest…I genuinely strive each day to choose joy, and remember God’s goodness and how truly blessed I am. But some days I fall short of that, and fear wins.
There is so little research on CIDP, and for someone like me who really needs knowledge to keep from panicking, well…it’s rough. The little bit that doctors do know about this disease doesn’t provide much comfort…they know just enough to scare me. CIDP is rare. CIDP during pregnancy is almost unheard of. I have been so fortunate to have “met” a few women online who have gone through this journey, and their willingness to share has been invaluable.
One of the few things doctors know about CIDP in pregnancy is that relapse is common in the third trimester, or in the weeks following delivery. Unfortunately, there doesn’t seem to be a treatment plan in place to help prevent this, so I’m left waiting for the other shoe to drop. I spend my days choosing joy and living in the moment because that is all I have, and I’m so incredibly thankful for these days. While I am not healthy or normal by general standards, I am much better than I was in the middle of my first flare up. I like to think of this time as being in a remission of sorts, and I try to spend each day thankful for the ability to move, walk, and hold my son.
But in the back of my mind, I am waiting. Waiting for the morning I wake up and can’t get out of bed.
I have been very emotional this pregnancy. I mean, crying-over-not-having-the-right-snacks-in-the-house, and sobbing hysterics over my 17 month old one day growing up and moving out kind of emotional. The phrase “you are so pregnant right now” is on repeat in my husband’s vocabulary, and we both laugh at how many feelings I have over everything. Part of this is, of course, the hormones of pregnancy and carrying a girl. But I’m starting to think that part of my crazy emotional roller coaster is being simultaneously excited to meet our sweet baby girl this spring, but being terrified of advancing in the pregnancy not knowing how my body will respond. I’ve told a few friends that I wish I could have a home birth, not because I actually want that experience, but because I’m terrified of being re-admitted to the hospital. I’m afraid I will check in expecting a 24-48 hour stay, and end up weak and useless in bed for over a month again. The fear is real, friends.
The days that the fear stops me in my tracks, I allow myself to feel the weight. I let myself cry and grieve for the normal pregnancy and anticipation I long for. And then I fall to my knees and pray. Pray like my life depends on it…because it does. Those prayers are often of few words, because the emotions are so strong that words will not come. But I know God knows my heart, and I trust He hears my cry. He is my comforter and my healer. I trust in His will for my life, even though I do not understand it. And when I forget to bow down in prayer, and have lost the strength to hope, I have an amazing community of friends that remind me to hold on. Friends that remind me it’s ok to grieve, it’s ok to cry and get angry. Friends that remind me I am not alone; that He never leaves me.
I don’t know why, but this is His will for my life. My God has called me to suffer for His sake, to be striped of many worldly things so I am reminded constantly that I am not in control. But He has not given me a spirit of fear. He is with me always. Each day is a new chance to give Him praise, to fight in His name, and to show the world His unfailing love and power in my weakness.
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