Random thoughts, fears, and being a rockstar

It’s been one of those weeks. The kind where the normal stresses of life blend with exhaustion, sickness and heightened emotions to create a thick grey cloud that hovers directly overhead. The kind of week that brings tear-filled telephone calls to family members and extra time spent thinking about some of the less-than-pleasant things in life.

For the fourth time in six months, I’m back in the hospital. I’ve tried to be positive and I’ve attempted to hide my frustration from that sweet little blondie who calls me “Mama.” But the fact of the matter is, this sucks! And she knows it as well as I do.

The night before I left for the hospital, Morgan slept in my bed with me. Sometime in the early morning hours, she started crying in her sleep so I pulled her closer to me, told her that I was there and tried to kiss away whatever darkness was filling her dreams. And that’s when, still asleep, she tearfully said, “But I don’t want my Mama to go to the doctor.” Right then and there, my heart shattered.

The next morning, we were just about ready to walk out the door when I knelt down to zip Morgan’s jacket up. “I don’t want you to go,” she cried. “I want you to stay at home with me.”

“I wish I could,” I told her. “But Mama needs to go to the hospital to get feeling better. I know it’s hard, but we can do this. We’re tough. We’re rockstars!”

I don’t think I’ve ever said that before. We’re rockstars? I’m not even sure where it came from, but in the moment it seemed like the right thing to say. I think I was trying to convince myself as much as I was trying to convince her… and it kinda worked.

Hours later, after once again blowing pretty dismal PFT numbers, I was making my way through the hospital to the CF clinic when I felt tears pricking the edges of my eyes. Why was I crying? I knew this was coming. I’d been sick for a couple weeks and knew a hospital stay was inevitable. I was prepared for this. I’m tough, I reminded myself, recalling the words I’d said to Morgan earlier that morning. Then I took a deep breath (well, as deep as these lungs would allow) and began silently chanting to the rhythm of my boots hitting the tile floor… I’m a rockstar, I’m a rockstar, I’m a rockstar.

There are a couple things that are bothering me more than usual this particular stay. First, the fact that Morgan has never struggled this much with me leaving home. She is beginning to realize that there is something different about me, but she’s not sure what it is or why. She asked Adam the other day, “Why does my mom have to go to the doctor a lot?” And just today it was, “Mama, do all mommies live at the hospital sometimes?”

I’ve always known she’d eventually start asking questions, but I wasn’t prepared for how difficult it would be to answer them. Serious questions deserve serious answers. I’m going to have to get a lot better at coming up with honest yet child-appropriate answers on the spot.

The other thing that is getting to me, that has been on my mind a lot these days, is how frequently my lung function is falling into a range much, much lower than I’m comfortable with. I hear it all the time: CF is a progressive disease. Slowly losing lung function over time despite making every effort to stay healthy… that is the nature of this beast. This is something I’ve always known. But now that it’s becoming a reality for me, now that I’m consistently blowing numbers 30-40% lower than just a few years ago, it’s suddenly a lot to handle. And it’s hard. Really, really hard.

But I think it’s okay to admit these things; that I’m scared about the future, that I don’t have all the answers to the hard questions, and that sometimes life is hard. I don’t think saying those things makes me any less of a person. In fact, I like to think that having those fears and learning to face them makes me stronger. Fear isn’t a pleasant emotion, but it certainly can motivate a person. Things aren’t as easy as I’d like them to be right now, and life is full of uncertainties – even more than usual, it seems – but I’m certain we’ll get through this and everything else life throws at us. Even when it’s really, really hard.

Right now Morgan is lying next to me in my hospital bed, sound asleep, but before she dozed off we were talking, our bodies sidled up next to each other and her head nestled into my neck. “I’m so happy you came to see me today,” I told her. “I’ve missed you.”

“I miss you too, Mama. But it’s okay, right?”

“Yeah, baby,” I whispered. “We’ll be okay. We’re tough.”

In fact, we’re rockstars. And rockstars never, ever give up.

8 thoughts on “Random thoughts, fears, and being a rockstar

  1. I'm so sorry Jenny! I still remember the first question Cambrees asked me, that question that made me realize she was starting to “get it”. “does Grandma have to do medicine like you do mama”. I remember fighting back tears. It's rough and really nothing anybody can say can make it easier when it comes to talking to our kids about the evils of CF. In fact just two nights ago, Cambrees called down, “are you ok mom?”. “Yeah, I'm ok babe, how come?”. “Iheard you coughing.” I hate that she has to worry about things like that. But I keep reminding myself, this is ok, it will only make her stronger. It just doesnt really make it easier.


  2. Keep on Keeping on ROCKSTAR!!! As I read this I could just see my daughters face. Jenny you are such a strong woman. Wishing for a fast hospital stay for you and your entire family 🙂


  3. Wow, that was a powerful post & a serious tear jerker. You guys are rockstars & you guys sure are tough!! You're such a great Mom Jenny. I really hope this hospital stay goes by quickly & that you won't have to be back in their so soon again.


  4. Sorry to hear you're back in again – and again. That sucks. My wife told me that during many of the last hospitalizations my daughter would cry at night before going to bed. Then the dog found a way to jump up and my daughter doesn't cry anymore. It was that simple. Who knew? You're right it is hard. I find it very frustrating that I never miss a treatment or airway clearance and my lung function continues to go down. It feels like there should be something I could do or take to stop or slow the decline. It's not fair. I hope you feel better soon and stay out of jail for at least 6 months the next time.


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