If you follow my story at all, you might remember I search for the sun in times of darkness. I’ve had quite a bit of that over the years. Darkness in my family life, darkness in my career, a time to pause, reflect, and regroup filled with darkness… it happens.
I know when I am there. In the dark. And I won’t let you in.
Don’t bother knocking.
I’ll quietly whisper, thanks for checking on me, but I’ll ignore your knock. So, for now, don’t try.
Yesterday was a chilly, windy day, and I knew I would find the sun outdoors, but the wind and the chill would do me more harm than the sun would do me good, so I stayed inside all day. Even the sound of the wind hitting the windows was enough to trigger my fears.
Today I woke in a better place. With severe anxiety, knowing I’m there and what I need to get through it helps more than any other action.
So, today, I think I can talk about what I’m going through – what I’m feel as a result of what my daughter is facing. I say that last bit because ultimately, this isn’t my problem. I’m not a victim.
It’s not happening to me.
I’ve struggled with Mom guilt. I’ve struggled with anger. I’ve struggled with sadness. All since Tuesday.
The roller coaster of parenting never truly stops. My ride car got stuck in a tunnel this week and stalled. In the dark. For two days I’ve cried. For two days I’ve relived those days my daughter was sick back at the end of January of this year. The days I was just as sick. I’ve never felt that miserable. For two days I’ve wondered if I failed as mother to care for my ill daughter. If I had been well, would I have caught something I didn’t otherwise catch?
This guilt and these questions of the unknown are enough to break me.
But I won’t let them.
And I need to include the facts surrounding those days. My daughter was cared for. Unlike years in the past when I was alone with my children so much of the time, I had my partner here with me. She cared for my daughter. She cared for me. She cared for our other children.
We each had medicine. She and I communicated about medicines I’d taken, medicines my daughter had taken. Tylenol every four hours. Motrin every four, alternating the Tylenol, if our fevers are too high. Cold medicine without a pain reliever/fever reducer for day and one for night to help us sleep…
We took our daughter to the doctor that Sunday. I sat there miserable watching as the doctor looked into each ear. I told him about our otoscope at home and how every time she gets sick since she was a baby, she gets ear infections. Most times, the virus hits her lungs too and she ends up with bronchitis or pneumonia, but not this time. With this illness, it was just her ears. I’d watched them for a few days. A little red. A little sore. My rule was always if she starts crying because of ear pain, she sees a doctor. A red ear doesn’t always need antibiotics, so I watch not only her ear but also her behaviors and reactions to the pain. It was time. The Urgent Care doctor diagnosed her with a double ear infection and gave her an antibiotic.
With no school the next day for her, I looked forward to resting myself, watching movies together, and working quietly from bed as the medicine healed her ears and time and cold meds healed me.
The next day came with almost a sense of relief. I wasn’t feeling great myself, but I could see the light at the end of the tunnel. She would be home from school, my other two kids would be in school, and my partner would be out all day. It would be a good day.
Only it wasn’t.
By 11am, my daughter was throwing up. I was in bed resting on night time cold medicine. She was down the hall in our loft watching Disney movies on a futon. I’d told her to call or text me if she needed anything. I was going to try to nap then work a bit from bed.
Her first text said, “I’m going to get a little something to eat.”
I asked if she wanted to get up or if she wanted me to get and get something for her to eat. This was a good sign. She’d asked for a milkshake for dinner the night before and barely touched it.
She said she was ok, but twenty minutes later she texted me again.
“I just puked- help”
I leaped out of bed and ran to her. She was standing at her bathroom sink crying.
Ok, this is a new thing. I’m wondering if we get to deal with something like Norovirus while we’re sick or if she’s reacting to the cereal she’d eater just a few minutes before or even the antibiotics.
I got her settled with a trash can handy back on the futon and came in with my laptop to sit with her in a bean bag chair next to the futon.
For several minutes, she kept sitting up with the trash can in her lap. A little here and a little there, but she wasn’t vomiting enormous amounts. I had her sip water in between, but she couldn’t keep it down, not even little sips.
About thirty minutes after that first text, she looked at me and told me she couldn’t see me. The she zoned out. Her eyes rolled in the back of her head and she couldn’t hear me. She was still sitting up. It was all very quick. A split second really.
I called her name and snapped my fingers in her face.
She came back to me.
But she looked right through me.
Something was wrong.
I watched her eyes closely, and at some point within a few moments, her eyes started to shake or move from left to right.
left right left right leftrightleftrightleft…
I had taken a nighttime cold medicine. I typically take children’s medicine because the regular adult doses knock me out.
I was so sick. I was loopy. Out of it. I couldn’t trust myself to drive.
And I didn’t have my car.
But I did have my partner’s truck.
I wondered if I could get my daughter down the stairs and up into a lifted truck. I didn’t trust myself. I didn’t trust I could even drive us to the hospital or to urgent care.
I called someone I trust and said to come over. Now.
Come now.
I left her alone for as long as it took me to run downstairs and open the garage then back up again.
My trusted person came over, talked, looked, and left.
We didn’t get her to the doctor. I asked. I asked for advice. I said I couldn’t drive. I said I couldn’t get her down the stairs.
I asked.
But I also didn’t know what to do. I also didn’t demand. I also didn’t just do it. I depended on someone to make those decisions for us both.
I called the pediatrician.
It took about three hours for them to call me back and tell me to take her to the ER.
By that time, my partner was ten minutes away with my car. We needed that ten minutes to get clothes gathered and get down the stairs.
After eight hours in the ER, they sent us to Children’s Hospital in Phoenix.
I explained this losing my daughter event and her rapid eye movement to person after person after person in two different hospitals. No one replied.
I’m not a doctor. I’d told everyone who visited with my daughter how her eyes shook left and right, how I wonder if she’d had a seizure, how I thought she’d passed out but was out of it for only a split second.
No one had anything to say about it.
While in the ER, he ears started draining. We told them about the double ear infection.
Her eardrums had burst.
Scary and painful, but it is what it is. We’re in the right place for pain meds and healing.
At 1am, we got into an ambulance and rode to Phoenix.
For the next four days, they hydrated my daughter, checked her ears which drained on to her pillow nonstop, and fed her antibiotics and antiviral medications through an IV.
She couldn’t hear any of us.
The sound of the television when she was awake, which was only about thirty minutes at a time, was so loud it made me ill.
I had the flu.
She’d been swapped twice, and the second swab came back with a positive for Type A flu. They quarantined us, and anyone who entered the room had to dress in isolation gowns to keep the flu in our room and away from anyone else. One nurse looked at me and my partner and told us we both had the flu as well. We were pretty miserable.
My partner drove home after the first night and came back each day to spend the day with us. She did this day after day for the days we were there.
She ran her business from her phone, came home to feed the animals and sleep, then did it all again the next day.
My daughter had to pass a few tests to be released. The first was to stand alone. She couldn’t do it for days.
The second was to eat enough to make her doctor happy. On day four, she did that. It wasn’t much, but it was more than the bite here and there she’d been eating. Once she ate a few bites, they took her off fluids for a few hours and tried everything again. Stand, walk, eat.
All good. Time to go home.
At the beginning of February, we were home and resting on a Friday and then all weekend before she went back to school again.
I reached out to all of her teachers after she’d missed a week of school and told them we’d work hard to help her catch up and he ears are still healing, so she can’t hear very well.
At first, we all thought she needed some time to heal. At first, we all thought maybe she could hear a little better than she thought. At first, we all thought all the gunk flowing out of her ears had maybe dried and they just needed to be cleaned.
Her follow up appointment with the ENT wasn’t until April, so we had to wait it out. She’d have plenty of time to heal and plenty of time to hear again.
Just this week, we had that follow up appointment. After several tests, talking, and more tests, her ENT told us she has permanent hearing loss.
Profound hearing loss.
She’s totally deaf in her right ear.
Look, I know it could be worse.
I know people all over don’t hear .
I know.
I know.
I know.
But this is my little girl who had the flu, had something happen to her right in front of me, was under hospital care, and now can’t hear as a result of it all.
Every person I talk to, every doctor I listen to, every time I replay it all in my head, I think of all the turns I missed. All the things I did wrong.
The eye shaking…
After all the doctors I mentioned that to in two hospitals, the only one to reply was the ENT this week – months after it happened. She told me that was the reason. She told me our eyes do that along with throwing up and vertigo when we have an inner ear infection.
Most ear infection occur in the middle ear. This one likely occurred in the inner ear and damaged the nerve that takes signals from the ear to the brain.
We’ll do an MRI soon.
An MRI.
To ensure she doesn’t have a tumor pressing against that nerve.
For now, her new reality is she is totally deaf in her right ear. She has to deal with constant buzzing in her ears and an occasional ringing that deafens both ears.
Tinnitus and suicide go hand in hand with patients who’ve to deal with constant ringing.
Her reality isn’t one I want her to face.
I’m coming out of my dark hole. It’ll take some time.
I know a few things at this point:
- My daughter needs strength from her tribe, and I’m a big part of that tribe.
- She is still the sweet amazing girl she’s always been.
- As a matter of fact, she’s my butterfly. I’ve always said she’s the one person in my family who finds the rainbow after a storm or could find a flower in the rubble of battle.
- She’s a survivor.
- She’s strong.
- She’s beautiful.
- We all need to pay attention to how we address her. Facing her while talking to her is a big deal. Being on her left side when we address her, when we walk with her, when we are near is a big deal.
- She’s a hell of a lot stronger than I am.
- And I love her more and more each and every day.
