I’m happy to report that after some very challenging weeks (months, really), things are finally looking up! I went to the doctor a week ago, fully expecting my breathing test score to be down even further. Even though I had been on IV antibiotics for more than two weeks, I was feeling awful, in fact worse than before I started the treatments. Doing the breathing test left me completely dizzy and exhausted and my lungs sounded terrible–raspy, congested and tight. So imagine my surprise when my FEV1 came back at 40, up 8 points from my previous 32! I could scarcely believe it, but was thrilled! I felt a shred of hope after what has been a very scary several weeks.
My doctor was pleased with the gain. He told me that I was one of a handful CF patients in their clinic who is experiencing the same type of exacerbation. He and his colleagues have concluded that the root problem is actually a virus. It is causing this inflammation which has been locking up congestion deep in the lungs. The inability to clear the congestion and the resulting build up is what is causing the drop in lung function. This explains why the antibiotics, although helping, didn’t make a huge difference right away. They are serving to keep the colonized bacteria at bay and preventing a secondary infection, but the root problem is still viral. It was so good to hear that I wasn’t the only one with this issue. It’s not as though I’m happy others are struggling, but it is comforting to know there is a reason for these symptoms that I’ve been experiencing, and that’s it’s not just my body and my disease going haywire.
I am making gains now, although I still have a way to go to hit “normal.” I suspect I won’t get there until I’m off the antibiotics and the steroids and can bank some deep, uninterrupted sleep. Tomorrow morning is my last dose and I’m so excited to be done and free from my line after 25 days. I have another appointment next week and I hope to see that FEV1 number jump a bit closer to my baseline.
These weeks have been very difficult for me physically, emotionally, and spiritually. This is the first time I’ve had a serious illness since Lucas was born, and boy, that certainly changed things. I could hear God telling me that He loved me, that I shouldn’t be afraid, and that I could trust Him. But I just couldn’t get my heart to accept those words. I was bound so tightly by fear. I would wake up each morning with a heavy, anxious heart. I was so very afraid–afraid that I wouldn’t regain any lung function, afraid my health was slipping, afraid that I would no longer be able to be the mother I wanted to be.
I finally realized that in order to release those fears, I needed to also release the tight grip I have on my child. I want so badly to meet his every need myself, and to protect him from hurt, and to be present and attentive–now and in the future. These intense desires were feeding my fears as I lost the ability to do those things for a time. I had to allow others to care for him so I could get rest and sleep. I saw the strain my illness put on him as he cried that he missed me and just wanted me. I heard his concern as he asked if I was okay and if the sick was gone. I saw his sadness and heard his complaints and there was nothing I could do to fix it. I spent more time in bed or on the couch than I did at the park or playing with him on the floor. It was painful. But just as God holds me in His hand, so He also holds my child. He loves Lucas even more than I do, and He can meet Lucas’s every need. He will take care of Lucas. And no matter what my future holds, God will never leave him. It’s not easy for me to loosen my grip, but I need to trust God with Lucas as much as I need to trust Him with my health and my life. I’ve heard people say that being a parent is an exercise in letting go. I guess my lessons are starting early.
And I know in my heart that God is already redeeming this illness in Lucas’s life and using these struggles for good. That sweet little guy has grown these past weeks! It wasn’t easy. I saw his uncertainly and fear. But I also saw him dig deep and be brave. By this third week he has accepted our current circumstances and has been cheerfully soaking up the love others are pouring out on him (and me). He happily went here and there every morning this week with friends or family so I could go back to bed and get extra sleep. It was hard for me to let him go, but it was great to see him thriving even without me.
I’m thankful that the worst of this illness appears to be over and we are hopefully on our way back to our normal life. I am grateful for the lessons I’ve learned through this and for the growth I’ve seen in my boy. I’m thankful that God is patient with me and is using my challenges to teach me more about His love and His purposes, and to foster a deeper trust in Him. And I’m extra thankful that bright hope has again filled my heart.
Yet this I call to mind and therefore I have hope: Because of the Lord’s great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness. Lamentations 3:21-23