I Have Nothing Cute to Say

The previous few weeks have been hard.

I'm a fairly positive person, but the past hospital admission with Jaycee has made things tough. (If you missed my last post, you can read more about the hospital stay here.) Seven days of watching your child endure pain, fight for breath, and lay in a bed in the ICU will wear on you as a parent. Then add three more days of care in the pulmonary unit where your child fights diaper changers with all her might, struggles to keep food down, and looks so sad to be in the hospital. It's hard in so many ways. I wish my daughter's health wasn't so fragile.

Jaycee sleeping with her Beast doll on continuous bi-pap in ICU

As I said in my last post, we are no strangers to the hospital or ICU. The familiarity with all of it is exhausting. I sat in the hospital and thought, "Not again! This can't be happening again!" But it was. We were warned back in 2013 that once you need a ventilator during an illness, you tend to fall harder and need more support for relatively common illnesses later on. Jaycee was almost expected to become a repeat ICU patient and that has been what she has become. Jaycee has been in the ICU every year since then for a cold virus or pneumonia or some other lung issue.

My first thought when we arrived home was, "How many times can this happen to my daughter? Is her life and ours ever going to have normalcy without hospitals?" Obviously, no one at the hospital believes it will be. "See ya next time," some of them said to us as we walked out the door. Hope not, but it has been the case for some time now.

This year alone I have accompanied Jaycee on an ambulance three times while she was transported to a Children's hospital for care. Twice the transports were for respiratory illnesses that resulted in hospital admissions. One was for the hemorrhage at home after her oral-pharyngeal surgery. That surgery, by the way, was excruciating for Jaycee for over a month. This year has had its ups and downs for sure.

As a writer, I try to share our life stories as well as how I cope in these situations. But this week, I can't find the silver lining. I have no cute story that's inspirational. I have no moment of revelation that happened in the hospital. My power of positivity is not here. I could tell you how Santa visited her in the ICU and how Jaycee has watched the video a dozen times since with happiness. But, I could also tell you it really stunk to hold Jaycee down to be suctioned several times. The bad outweighed the good as far as I can tell.

If there's something positive to say, it's this: I know there is still a God. I know God is working in my daughter someway and somehow because she is still here even though she has several health conditions that don't put things in her favor. And, I certainly love her dearly.

That's why all of this hurts so much sometimes. It hurts to see her in pain and sick and looking at me with those eyes like I should be protecting her from the nurses who must stick and poke and prod. I hate it for her, because I love her so much. Even when I felt like running out of her room when she was in the hospital because I didn't want to watch her in pain and struggle, I stayed. I held her hand. I put on her favorite movie.

I dug down deep in those moments and found something cute to say to her.