How My Body Responds to My Daughter's Illnesses

I don't know what it's like to have a surgery. I'm never had one myself.

I don't know what it's like to be a small child in the hospital for an illness. I was a senior in high school the first (and only) time I was in the hospital for an illness.

I certainly don't know what it's like to be taken to the emergency room in the middle of the night due to respiratory distress. That's never happened to me.

I don't know how any of these things feel for my daughter, who has experienced them all many times, but I DO know what it's like for the helpless parent in this scenario.

Whatever I have experienced in a health crisis is nothing compared to my daughter. I want to make that clear. I can't imagine what her post-hospital thoughts and problems are. With her limited verbal skills, I can only glean from the behaviors she displays later on.

As my daughter's caregiver though, I have had my own set of problems that stem from caring for a child with chronic health problems. I have been reluctant to share them because I don't want to seem like I'm trying to make her experiences about me. But, this is the side of the story I personally know. My body and mind have been changed forever from Jaycee's surgeries, emergency respiratory crises, and over 30 hospital admissions. Here's some things I have experienced from my daughter's health issues:


Hearing Beeps and Alarms
When Jaycee left the NICU after a 10 day stay, I came home "hearing" the beeps, dings, and alarms that I had been listening to nonstop at the hospital. There were no monitors at home, so there was absolutely nothing making these sounds. My brain got accustomed to the constant noises in the NICU and had to adjust back to silence. I thought it was such an odd phenomenon of hearing things that weren't real that first time, but it's happen several times to me after subsequent hospital stays with Jaycee. Now, I know that I may come home hearing beeps and alarms that aren't there, but they will leave in a day or two.

My Son Talking to Jaycee while she's in ICU on Day Time Bi-Pap Use

Nightmares
After an unplanned hospital stay, it is not uncommon for me to have nightmares about the hospital once we get home. Generally, the scarier the hospital stay the more intense the nightmares are and the longer I tend to have them. After a few days in the hospital for a less severe respiratory issue, I might have a nightmare or two within a week of being home. My nightmares aren't about serial killers or monsters. They are usually intense dreams about some aspect of the hospital.

After a few of Jaycee's very intense ICU stays that required a ventilator, I have had nightmares on and off for months. Most of them were hospital scene based. Many of them involved Jaycee being in the hospital struggling to breathe while I was lost in the hallways, trying to find her room. (If you are a dream analyst, feel free to message the meaning of that dream to me.) Sometimes, I have woken up from these dreams with a racing heart and fast breathing. Sometimes, I wake up confused about where I'm at, especially if we have just gotten home from the hospital. I have to remind myself that she and I are both safe at home.

I learned too that watching movies or television shows that are hospital based can trigger nightmares. For awhile, I was watching reruns of the sitcom "Scrubs" before bed. I started having nightmares again out of the blue. Even though nothing scary was happening in the comedic show, something about seeing the hospital scenes depicted triggered something in my brain.

Muscle Aches and Tightness
This is the most frequent and long term issue I have. The muscles in my arms, neck, and shoulders get unbelievably tight. At first, I blamed the tightness on the lifting and moving I did with Jaycee during an admission. It took me months and months (maybe a year) to realize my tight muscles were a result of the stress of caring for someone in the hospital so much. My muscles became so tight that I physically could not make them relax. I tried a technique called progressive relaxation where you tighten and relax your muscles in a certain sequence to get your whole body in a state of relaxation. I literally could not relax certain muscles no matter how focused I was.

The tightness eventually led to my left hand going numb, and that's when I started to understand I had a real problem. I lived on nightly Bio Freeze or Icy Hot applications. For a time in my life, I made weekly massage therapy appointments. These were not luxurious appointments, these were a necessity. Every therapist commented on my knots and the extreme tightness of my muscles. All of them asked me if I had stress in my life. One described massaging my neck and shoulders as pressing against a hard rock. I finally got to a place where my muscles could relax. I won't say I'm a 100% better, but I can recognize the tightness quicker now and try to take a more proactive approach.

Teeth Grinding
At one dental appointment, I was asked if I was aware of my nighttime tooth grinding. I wasn't. The dentist showed me the places on my mouth which indicated some serious grinding. After he made me aware, I did catch myself sometimes grinding when I was just starting to wake up. I ended up getting a night guard made from my dentist, because clearly I had a problem. I'm not sure when it started, but I can tell you the grinding gets worse with the stress I feel during illnesses with Jaycee.

The night guard has helped, but I don't always remember to pack it when an emergent illness arises. There have been times in the hospital that I have woken up in pain from intense grinding and jaw clenching. This is a problem for Jaycee too. When we drive to the hospital, sit in the emergency room, or wait for a doctor, she will grind her teeth SO LOUDLY!! She does this during the day while awake, but my problem happens at night when I can't control it.



There you go. Now, you know how my body has responded to my child's chronic health issues. I often wonder if she hears beeps and alarms that aren't there. I wonder if she is having nightmares about the hospital we just left. I wonder if she gets aches and pains from tight muscles after being stressed in the hospital. If I am a by-stander in this story, I wonder what all is happening to her. Perhaps, one day she'll be able to verbalize it to me. Until then, we'll just continue on and hope that the next illness is a long way off.