When hospitals are just part of life

When hospitals are just part of life


This week I was talking to a mom while her children took swimming lessons from my brother. Not an uncommon scene in the summer at Grandpa’s pool. We were talking about the school year that is about to start and how disorganized things are. General griping. She mentioned how grateful she was for the mask mandate in our district because in December 2019 one of her sons went into lung failure after contracting a virus. He spent 5 days in the hospital. Since then her son has been terrified to even go to the dentist because he is afraid they are going to put a tube down his throat (breathing tube). I nodded and said that I understood. And I do. I explained how Lyra struggles with many things due to trauma. Trauma inflicted to save her life, but trauma none the less. I explain her resistance to masks and her panic with face shields. Her anxiety at appointments and her tears with some situations. I mentioned Lyra has had many stays at the hospital.

The mom stopped and looked at me. She said, “We spent 5 days in the hospital and it shook my whole family. How do you handle every hospitalization?”

I didn’t really answer and we were quickly distracted by something one of our children did. *Snap out of the moment and into active mom mode*

But this question has been rattling in my head for a few days. How do we deal with it? How do we deal with the fact that hospital stays are simply a fact of our lives? I think the best way to describe it is that they are never easy, but we just come prepared. What do I mean by this? Let me give three examples:

  1. Earlier this week Lyra’s eye swelled shut and we weren’t sure why. I ended up taking her to a local Children’s Hospital ER (not the main hospital) because I was confident she just needed some antibiotics. However, I took the time to grab a phone charger, snack, water bottle, kindle, ipad (for Lyra), bunny, and a pair of my sweat pants. Why? We might be in the ER for awhile, and on the off chance she was admitted, sweat pants are much more comfortable to sleep in.
  2. In July 2020 Lyra went in to have a brain MRI and have the tubes in her ears checked. This is routine stuff for her, but does require putting her under anesthesia. The expectation was that she would be under for about an hour, then we would go home after Lyra wakes up. No biggie. What did I bring with me? All of the things listed for the ER visit plus a pillow, a full change of cloths, and a tooth brush. Why? Sometimes weird things happen when Lyra goes under anesthesia. Sure enough, we ended up in the hospital for 4 days. Why? Turns out Lyra had a UTI and decided to start having weird symptoms while coming out of anesthesia. Were the two events related? No. But weird things happen, so I come prepared.
  3. When Lyra was under a year, and we were really in the thick of things, I took her to the ER because she couldn’t keep any fluids down. She needed an IV and I knew she was doing to be hospitalized. Upon arriving at the hospital I used my pillow and favorite blanket to prop her up in a wagon I found in the parking lot (they are all over the hospital). I then added the bag holding my trusty blow up bed, a small grocery bag of snacks, and a few of her toys. I then wheeled the wagon and my small suitcase (carry on size) into the ER. Upon getting into the room in the ER the nurse looked at my stuff and said “this is a little dramatic for an ER visit.” I informed her we were going to be admitted and she rolled her eyes. I didn’t get offended. She hadn’t had a chance to really look at Lyra’s chart. Later she helped me transport our stuff into the room we stayed in for the next 20ish days.

Where all of these events stressful? Yes… to varying degrees. But I also knew what to prepare for, because I’d been there before. Do I still get upset? Oh yes. I’m always sad when I arrive in one of the rooms on the 8th floor. I always set Lyra up in her bed and make sure she is safe. I get her IV pole set up on the correct side of the bed, and rearrange my chair so that I can sit with her easily and still see the TV. Then I take out my chargers and set them up in the locations that are easiest to access. I put my toiletries in the bathroom, and stack my cloths on the bench by the window. I set any snacks on the desk, then tuck any bags underneath so they aren’t taking up space in the small room. Typically I will send a text to a few family members to let them know what room I’m in, then I will call my husband with an update. He’s typically on his way in with more supplies and things I forgot. He hangs back and gets things set up at home for us to be gone. I normally shed a few tears while my back is to Lyra, because I never want to be there. But the hospital is part of my life. Part of her life. I know what to expect. And now, I come prepared.

So how do I handle each hospitalization? One at a time. I take a deep breath and settle in, because it’s what Lyra needs. Is it easy? No. Does it get easier, not totally. But I also don’t do it alone. My husband holds the household together and comes every day. My mom visits (typically with food so I actually eat) and sometimes even spends the night. My whole family plays different roles that keep the pieces of my life together while Lyra gets the care she needs. You just do it. You just deal with it (and that does include crying when you need to).

It’s been 13 months since our last hospital stay…. not that I’m counting.

2 thoughts on “When hospitals are just part of life

  1. Jaime, you and Mark are amazing. I know everyone in the immediate family truly helps to support Lyra and your family. As Erik says, “Jaime and Mark have the toughest jobs.” We love and respect you guys so much!!!


  2. Hi I am the community builder at Alongside Network. We provide mental health support to families who have a child that has experienced a life-threatening illness or injury. Research-based and family-centered, we use a peer-to-peer framework to mitigate families’ traumatic experiences and help each family member to feel validated, connected, and capable of adjusting. I came across your blog and saw that you were in search of support. Our wellbeing groups are currently open for enrollment. If this is something that might be helpful to you, please reach out to me at keya@alongsidenetwork.org.


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